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Sample records for genome science ethics

  1. Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy.

    ERIC Educational Resources Information Center

    Cutter, Mary Ann G.; Drexler, Edward; McCullough, Laurence B.; McInerney, Joseph D.; Murray, Jeffrey C.; Rossiter, Belinda; Zola, John

    The human genome project started in 1989 with the collaboration of the National Institutes of Health (NIH) and the U.S. Department of Energy (DOE). This document aims to develop an understanding among students of the human genome project and relevant issues. Topics include the science and technology of the human genome project, and the ethical and…

  2. Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan.

    PubMed

    Minari, Jusaku; Shirai, Tetsuya; Kato, Kazuto

    2014-12-01

    As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project-the Genome Science Project-this article presents a novel approach to conducting a specific policy for personal genome research in the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology.

  3. Mapping and sequencing the human genome: Science, ethics, and public policy. Final report

    SciTech Connect

    McInerney, J.D.

    1993-03-31

    Development of Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy followed the standard process of curriculum development at the Biological Sciences Curriculum Study (BSCS), the process is described. The production of this module was a collaborative effort between BSCS and the American Medical Association (AMA). Appendix A contains a copy of the module. Copies of reports sent to the Department of Energy (DOE) during the development process are contained in Appendix B; all reports should be on file at DOE. Appendix B also contains copies of status reports submitted to the BSCS Board of Directors.

  4. [Ethics, science and utilitarianism].

    PubMed

    Ribeiro, T

    1997-11-01

    We begin this article with the distinction between Deontology, Moral and Ethics. We also review the concept and the relevance of Bioethics, as the "science of survival", and as part of Ethics, a section of Philosophy. We tried to answer two further questions considering the role of Science in orienting Ethics, or the possible place of utilitarianism in controlling Ethics. The author discusses some new aspects of the doctor/patient relationship, and their evolution in the last 100 years, as well as the relations between patients and Health care institutions. Some ethical problems were also raised related to the beginning and the end of life. Finally the author reflects on the difficulties of defining ethical concepts in the near future.

  5. Ethical Ambiguity in Science.

    PubMed

    Johnson, David R; Ecklund, Elaine Howard

    2016-08-01

    Drawing on 171 in-depth interviews with physicists at universities in the United States and the UK, this study examines the narratives of 48 physicists to explain the concept of ethical ambiguity: the border where legitimate and illegitimate conduct is blurred. Researchers generally assume that scientists agree on what constitutes both egregious and more routine forms of misconduct in science. The results of this study show that scientists perceive many scenarios as ethically gray, rather than black and white. Three orientations to ethical ambiguity are considered-altruism, inconsequential outcomes, and preserving the status quo-that allow possibly questionable behavior to persist unchallenged. Each discursive strategy is rationalized as promoting the collective interest of science rather than addressing what is ethically correct or incorrect. The results of this study suggest that ethics training in science should focus not only on fabrication, falsification, and plagiarism and more routine forms of misconduct, but also on strategies for resolving ethically ambiguous scenarios where appropriate action may not be clear.

  6. Assessing Ethics in Secondary Science

    ERIC Educational Resources Information Center

    Reiss, Michael J.

    2011-01-01

    An increasing number of science courses now include consideration of the ethical implications of science. However, there is little agreement about how ethical reasoning in science should be assessed. This article highlights the conclusions of a seminar on the assessment of ethics in science that was organized by the Nuffield Foundation Curriculum…

  7. Ethics in Science.

    PubMed

    Sharma, Om P

    2015-09-01

    Ethics are a set of moral principles and values a civilized society follows. Doing science with principles of ethics is the bedrock of scientific activity. The society trusts that the results and the projected outcome of any scientific activity is based on an honest and conscientious attempt by the scientific community. However, during the last few decades, there has been an explosion of knowledge and the advent of digital age. We can access the publications of competitors with just a "click". The evaluation parameters have evolved a lot and are based on impact factors, h-index and citations. There is a general feeling that the scientific community is under a lot of pressure for fulfilling the criteria for upward growth and even retention of the positions held. The noble profession of scientific research and academics has been marred by the temptation to falsify and fabricate data, plagiarism and other unethical practices. Broadly speaking, the breach of ethics involves: plagiarism, falsification of data, redundant (duplicate) publication, drawing far-fetched conclusions without hard data, for early publicity, gift authorship (receiving as well as giving), not giving sufficient attention and consideration to scholars and post-docs as per the norms, self promotion at the cost of team-members, treating colleagues (overall all juniors) in a feudal way and Machiavellianism (cunningness and duplicity in general conduct and push to positions of power and pelf). Misconduct in Indian academics and science is also under a lot of focus. It is important and urgent that science, engineering, and health departments and institutions in our country have in place systems for education and training in pursuit of science with ethics by sound and professional courses in Responsible Conduct of Research. All research and academic institution must have the Office of Ethics for information, guidelines, training and professional oversight of conduct of research with the ethos and ethics

  8. Ethics in Science.

    PubMed

    Sharma, Om P

    2015-09-01

    Ethics are a set of moral principles and values a civilized society follows. Doing science with principles of ethics is the bedrock of scientific activity. The society trusts that the results and the projected outcome of any scientific activity is based on an honest and conscientious attempt by the scientific community. However, during the last few decades, there has been an explosion of knowledge and the advent of digital age. We can access the publications of competitors with just a "click". The evaluation parameters have evolved a lot and are based on impact factors, h-index and citations. There is a general feeling that the scientific community is under a lot of pressure for fulfilling the criteria for upward growth and even retention of the positions held. The noble profession of scientific research and academics has been marred by the temptation to falsify and fabricate data, plagiarism and other unethical practices. Broadly speaking, the breach of ethics involves: plagiarism, falsification of data, redundant (duplicate) publication, drawing far-fetched conclusions without hard data, for early publicity, gift authorship (receiving as well as giving), not giving sufficient attention and consideration to scholars and post-docs as per the norms, self promotion at the cost of team-members, treating colleagues (overall all juniors) in a feudal way and Machiavellianism (cunningness and duplicity in general conduct and push to positions of power and pelf). Misconduct in Indian academics and science is also under a lot of focus. It is important and urgent that science, engineering, and health departments and institutions in our country have in place systems for education and training in pursuit of science with ethics by sound and professional courses in Responsible Conduct of Research. All research and academic institution must have the Office of Ethics for information, guidelines, training and professional oversight of conduct of research with the ethos and ethics

  9. Ethics and Information Science.

    ERIC Educational Resources Information Center

    Kochen, Manfred

    1987-01-01

    Discussion of the debate in the information science profession over whether a code of ethics would be useful presents sample issues and places them in historical and philosophical frameworks for considering the tension between knowledge and power. Practical guidelines are offered to help information professionals act out of wisdom. (Author/EM)

  10. Ethical issues in human genome research

    SciTech Connect

    Murray, T.H. )

    1991-01-01

    In addition to provocative questions about science policy, research on the human genome will generate important ethical questions in at least three categories. First, the possibility of greatly increased genetic information about individuals and populations will require choices to be made about what that information should be and about who should control the generation and dissemination of genetic information. Presymptomatic testing, carrier screening, workplace genetic screening, and testing by insurance companies pose significant ethical problems. Second, the burgeoning ability to manipulate human genotypes and phenotypes raises a number of important ethical questions. Third, increasing knowledge about genetic contributions to ethically and politically significant traits and behaviors will challenge our self-understanding and social institutions.

  11. Ethics, genomics, and information retrieval.

    PubMed

    Goodman, K W

    1996-05-01

    The union of genomics and computational information retrieval raises a number of ethical issues, including data sharing, database accuracy, group and subgroup stigma, and privacy and confidentiality. These issues are introduced and assigned a preliminary analysis which, it is hoped, may be of use in more sustained efforts to identify issues, solutions and potential guidelines, to stimulate education, and to strike the most appropriate balance between the rights of individuals and the needs of researchers and society.

  12. Teaching Ethical Issues in Science.

    ERIC Educational Resources Information Center

    Levinson, Ralph

    This paper presents a study that investigates the teaching and learning aspects of controversial issues in science education. Teaching ethical issues is mandatory for science teachers in England; however, teachers may experience difficulties in exploring contemporary issues in science due to rapid and unpredictable changes. The study carries an…

  13. Ethics in health sciences librarianship.

    PubMed

    Hurych, J M; Glenn, A C

    1987-10-01

    Against a background of discussion about drafting of an ethical code for librarians and a review of articles confronting ethical issues in librarianship, the authors surveyed the 150 institutional members of the Health Science Librarians of Illinois (HSLI) regarding their perceptions of ethical concerns. Among the issues addressed in the survey are library organization, personnel policies, and professional competency, along with the traditional concerns of professional versus personal values, privacy and confidentiality, access to materials, and materials selection criteria in a health sciences context. Based on a 60% response rate, survey results indicate widespread agreement on some issues and a conspicuous lack of consensus on others. Further research is suggested in order to assess the need for a separate ethical code for health sciences librarians.

  14. Ethics in health sciences librarianship.

    PubMed Central

    Hurych, J M; Glenn, A C

    1987-01-01

    Against a background of discussion about drafting of an ethical code for librarians and a review of articles confronting ethical issues in librarianship, the authors surveyed the 150 institutional members of the Health Science Librarians of Illinois (HSLI) regarding their perceptions of ethical concerns. Among the issues addressed in the survey are library organization, personnel policies, and professional competency, along with the traditional concerns of professional versus personal values, privacy and confidentiality, access to materials, and materials selection criteria in a health sciences context. Based on a 60% response rate, survey results indicate widespread agreement on some issues and a conspicuous lack of consensus on others. Further research is suggested in order to assess the need for a separate ethical code for health sciences librarians. PMID:3450346

  15. Levinas and an Ethics for Science Education

    ERIC Educational Resources Information Center

    Blades, David W.

    2006-01-01

    Despite claims that STS(E) science education promotes ethical responsibility, this approach is not supported by a clear philosophy of ethics. This paper argues that the work of Emmanuel Levinas provides an ethics suitable for an STS(E) science education. His concept of the face of the Other redefines education as learning from the other, rather…

  16. Science, Ethics and Education

    ERIC Educational Resources Information Center

    Elgin, Catherine

    2011-01-01

    An overarching epistemological goal of science is to develop a comprehensive, systematic, empirically grounded understanding of nature. Two obstacles stand in the way: (1) Nature is enormously complicated. (2) Findings are fallible: no matter how well established a conclusion is, it still might be wrong. To pursue this goal in light of the…

  17. Evolving Approaches to the Ethical Management of Genomic Data

    PubMed Central

    Boyer, Joy T.; Sun, Kathie Y.

    2013-01-01

    The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science. PMID:23453621

  18. Case Studies in Science Ethics

    NASA Astrophysics Data System (ADS)

    Williams, Karen

    2010-03-01

    Everyone in science should have ethics education training. I have seen graduate students taken advantage of by their mentors. Many of us have seen misconduct...but what should we do about it? Young scientists are often unaware of the rules in science and make mistakes because of their ignorance of the rules in that particular field of study. Then there are an increasing number of cases in the news of overt cases of misrepresentation in science. All are welcome to attend this discussion of case studies. A case study on topics such as: how to treat data properly, how our values in science affect our work, who gets authorship on scientific papers, who is first author on a paper, what you should do if you uncover misconduct or plagiarism in your university, and we will discuss the scientist's role in society. This will be a painless, non-confrontational small group, then large group discussion of each case

  19. A Test for Ethical Sensitivity in Science.

    ERIC Educational Resources Information Center

    Clarkeburn, Henriikka

    2002-01-01

    Describes a University of Glasgow (Scotland) Test for Ethical Sensitivity in Science (TESS) as a pen and paper measure for studying ethical sensitivity development in young adult students. Requires students to respond to an unstructured story where responses are scored on level of recognition of ethical issues. Evaluates overall study results.…

  20. [Ethical issues in genome-era].

    PubMed

    Kosugi, Shinji

    2016-06-01

    Handling of personal genome information is one of the most important current ethical issues in the era of next generation sequencer which is technically progressing at a furious speed, making it 100,000 times faster in only in five years. The author picked up topics of(1) research and clinical guidelines of handling of human genome information, (2) incidental and secondary findings of next generation sequencer in clinical exome and genome sequencing, and (3) so-called direct-to-consumer genetic testing services. In the topic(2), ACMG (American College of Medical Genetics and Genomics) recommendations inreporting incidental findings proposed in 2013 and 2014 are focused.

  1. Ethics in exercise science research.

    PubMed

    Shephard, Roy J

    2002-01-01

    Ethical evaluation is a vital but sometimes neglected component of research policy in the exercise sciences. This article reviews some issues in human research, with particular reference to studies undertaken by the exercise scientist. The typical composition and functions of the research review committee are examined in the context of individual and institutional ethical norms. In multicentre trials, there are often problems in coordinating ethical approval between institutions. On-going monitoring of research may have value in the detection of fraud. A reduction in the secrecy of committee proceedings would allow a closer auditing of the research review process. Authors need to give more thought to developing appropriate research questions. Scarce resources may be wasted because of inappropriate study design or an inadequate statistical analysis of the results. The costs of any proposed investigation must be weighed carefully against possible benefits. Confidentiality is particularly important when collecting data at the worksite or over the internet. Informed consent should be based on a full disclosure of risks; the participant should be competent to understand the nature and magnitude of these risks, and undue pressure to participate in an experiment must be avoided. The opposition to placebo trials expressed in the Declaration of Helsinki requires careful consideration of the use of control groups, since regular exercise is known to benefit health. If research is conducted in under-developed societies, the standards of treatment of the participants should match those expected in developed societies. The publication of findings must be fair and well balanced; examples of fraud and misconduct continue to be reported. Some journals apparently still publish papers, even if they have not received an initial institutional review. Editors should restore meaning to the word 'author', avoid the bias to a publication of 'positive' results, limit the impact of

  2. Six Challenges for Ethical Conduct in Science.

    PubMed

    Niemi, Petteri

    2016-08-01

    The realities of human agency and decision making pose serious challenges for research ethics. This article explores six major challenges that require more attention in the ethics education of students and scientists and in the research on ethical conduct in science. The first of them is the routinization of action, which makes the detection of ethical issues difficult. The social governance of action creates ethical problems related to power. The heuristic nature of human decision making implies the risk of ethical bias. The moral disengagement mechanisms represent a human tendency to evade personal responsibility. The greatest challenge of all might be the situational variation in people's ethical behaviour. Even minor situational factors have a surprisingly strong influence on our actions. Furthermore, finally, the nature of ethics itself also causes problems: instead of clear answers, we receive a multitude of theories and intuitions that may sometimes be contradictory. All these features of action and ethics represent significant risks for ethical conduct in science. I claim that they have to be managed within the everyday practices of science and addressed explicitly in research ethics education. I analyse them and suggest some ways in which their risks can be alleviated.

  3. [Ethical and social issues on the human genome analysis].

    PubMed

    Archer, L

    1992-03-01

    The modern technologies for human genome analysis raise a variety of ethical and social questions. The pre-symptomatic diagnostic of diseases of late expression is becoming possible for a rapidly increasing number of situations. The use of that knowledge by employers, insurance companies, schools, and society in general, could lead to discriminations and stigmatizations, in addition to adverse psychological reactions. DNA fingerprinting raises questions of privacy and personal autonomy in its applications to paternity proof, criminal proceedings, and establishment of data banks. The project of the immediate and complete sequencing of the human genome will lead to questions of economical ethics, as well as of access, commercialization and property rights of scientific information and materials obtained. It also favours a reducionistic mentality and international unbalances. The molecular biology of humans, which will follow the complete sequencing of the genome, may foster a rethinking of the concepts of freedom of self-determination (basic for moral responsibility) and of equality. The gene therapy and its possible extension to the betterment of the human species, pose questions of ethical limits to this technology. All these problems will have to be answered in terms of the application of the principle of ethical freedom for self-fulfillment, as a right of the human person, as well as of science and society. Scientific, economic and social interests have to be subordinated to the dignity of the human person.

  4. [Ethical issues in personal genome research].

    PubMed

    Kato, Kazuto; Minari, Jusaku

    2013-03-01

    The rapid expansion of techniques for studying human genomics has remarkably changed research and practice. It is expected that more progress will be made in the field of medical and biological research owing to the technological advances. Genomics researchers collect human genetic material, including DNA and cells, from a large number of individuals and carry out "personal genome analysis"; as a result, new types of ethical, legal, and social issues (ELSI) have arisen, including issues such as informed consent procedures, data sharing, protection of genetic information, and return of research results. To address these issues, many large research projects have established specialist groups that are devoted to manage ELSI of their research. The guidelines for genomics research set by the government are also expected to be revised accordingly. In this paper, we present an overview of ELSI of personal genome research and discuss necessary measures to tackle these issues.

  5. An Ethically Ambitious Higher Education Data Science

    ERIC Educational Resources Information Center

    Stevens, Mitchell L.

    2014-01-01

    The new data sciences of education bring substantial legal, political, and ethical questions about the management of information about learners. This piece provides a synoptic view of recent scholarly discussion in this domain and calls for a proactive approach to the ethics of learning research.

  6. Ethics: The Failure of Positivist Science.

    ERIC Educational Resources Information Center

    Lincoln, Yvonna S.; Guba, Egon G.

    1989-01-01

    The metaphysical assumptions undergirding conventional (positivist) approaches to research in the social sciences provide a warrant both for deceptive research and for objectifying human research participants. The present status of ethical guidelines for inquiry are reviewed. Special ethical problems typical of naturalistic inquiry are outlined.…

  7. International Perspectives on Science Communication Ethics.

    ERIC Educational Resources Information Center

    Lewenstein, Bruce V.

    1997-01-01

    Uses the fields of science communication and science journalism to explore different cultural perspectives in science with attention to ethics and values. Provides examples of the kinds of issues that can be raised for students who go overseas and suggests the types of thinking and learning that these issues can stimulate. (Author/VWL)

  8. Ethical Considerations Regarding Classroom Use of Personal Genomic Information

    PubMed Central

    Parker, Lisa S.; Grubs, Robin

    2014-01-01

    Rapidly decreasing costs of genetic technologies—especially next-generation sequencing—and intensifying need for a clinical workforce trained in genomic medicine have increased interest in having students use personal genomic information to motivate and enhance genomics education. Numerous ethical issues attend classroom/pedagogical use of students’ personal genomic information, including their informed decision to participate, pressures to participate, privacy concerns, and psychosocial sequelae of learning genomic information. This paper addresses these issues, advocates explicit discussion of these issues to cultivate students’ ethical reasoning skills, suggests ways to mitigate potential harms, and recommends collection of ethically relevant data regarding pedagogical use of personal genomic information. PMID:25574277

  9. Beyond the genome: The ethics of DNA testing

    SciTech Connect

    Fackelmann, K.A.

    1994-11-05

    This article looks at the implications of identification of specific genes in the human genome. Ethical questions concerning inherited conditions include privacy, paternity, judgement, society versus individual.

  10. Legal, ethical, and social issues in human genome research.

    PubMed

    Greely, H T

    1998-01-01

    In the past several decades, biological sciences have been revolutionized by their increased understanding of how life works at the molecular level. In what ways, and to what extent, will this scientific revolution affect the human societies within which the science is situated? The legal, ethical, and social implications of research in human genetics have been discussed in depth, particularly in the context of the Human Genome Project and, to a lesser extent, the proposed Human Genome Diversity Project. Both projects could have significant effects on society, the former largely at the level of individuals or families and the latter primarily at the level of ethnic groups or nations. These effects can be grouped in six broad categories: identity, prediction, history, manipulation, ownership and control, and destiny.

  11. Science and ethics: Some issues for education

    NASA Astrophysics Data System (ADS)

    Andrew, Jennifer; Robottom, Ian

    2001-11-01

    Ethical issues concerning pain and suffering of animals are necessarily a consideration when it comes to killing pest or feral species in Australia. Within a continent where there are no large predators, many introduced animal species such as rabbits, foxes, horses, donkeys, camels, goats, and mice have been able to thrive, competing with the interests of farmers and graziers, and livestock and food production. These species, thus, gain the label of pest. Many methods now exist to kill these species and, consequently, ethical issues arise concerning the possible pain and suffering caused as a direct result of these methods. Yet within government and scientific communities, ethical issues are reduced to a secondary consideration without serious debate or contention. Ethical issues appear to be at odds with scientific agendas. How can environmental ethics be incorporated as part of science-based decision making that appeals to objectivity and scientific evidence? Within educational institutions as well, the same dilemma exists: How can ethical issues be addressed within the science curriculum and in the classroom? A greater understanding of various perspectives on the subject of environmental ethics and the value positions advocated by proponents of these perspectives may help teachers consider ways of handling such issues in the science classroom.

  12. Public Service Ethics in Health Sciences Libraries.

    ERIC Educational Resources Information Center

    Wood, M. Sandra

    1991-01-01

    Discussion of ethics in libraries focuses on health sciences libraries. Highlights include distinguishing features of reference services in health sciences libraries, including the technical nature of the literature and pressures and time constraints on health care personnel; quality of service; access to information; confidentiality; intellectual…

  13. Ethics, genetics and science policy.

    PubMed

    Tranoy, K E

    1992-04-01

    Ethical issues raised by recent rapid advances in genetics are being discussed in many settings. A version of this paper was read by its author, a Norwegian moral philosopher, at a recent symposium celebrating 90 years of the Nobel prize.

  14. The Ethical Challenges of Socially Responsible Science

    PubMed Central

    Resnik, David B.; Elliott, Kevin C.

    2015-01-01

    Social responsibility is an essential part of the responsible conduct of research that presents difficult ethical questions for scientists. Recognizing one’s social responsibilities as a scientist is an important first step toward exercising social responsibility, but it is only the beginning, since scientists may confront difficult value questions when deciding how to act responsibly. Ethical dilemmas related to socially responsible science fall into at least three basic categories: 1) dilemmas related to problem selection, 2) dilemmas related to publication and data sharing, and 3) dilemmas related to engaging society. In responding to these dilemmas, scientists must decide how to balance their social responsibilities against other professional commitments and how to avoid compromising their objectivity. In this article, we will examine the philosophical and ethical basis of social responsibility in science, discuss some of the ethical dilemmas related to exercising social responsibility, and make five recommendations to help scientists deal with these issues. PMID:26193168

  15. Genomic cloud computing: legal and ethical points to consider.

    PubMed

    Dove, Edward S; Joly, Yann; Tassé, Anne-Marie; Knoppers, Bartha M

    2015-10-01

    The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Researchers are increasingly turning to cloud computing both as a solution to integrate data from genomics, systems biology and biomedical data mining and as an approach to analyze data to solve biomedical problems. Although cloud computing provides several benefits such as lower costs and greater efficiency, it also raises legal and ethical issues. In this article, we discuss three key 'points to consider' (data control; data security, confidentiality and transfer; and accountability) based on a preliminary review of several publicly available cloud service providers' Terms of Service. These 'points to consider' should be borne in mind by genomic research organizations when negotiating legal arrangements to store genomic data on a large commercial cloud service provider's servers. Diligent genomic cloud computing means leveraging security standards and evaluation processes as a means to protect data and entails many of the same good practices that researchers should always consider in securing their local infrastructure.

  16. Genomic cloud computing: legal and ethical points to consider

    PubMed Central

    Dove, Edward S; Joly, Yann; Tassé, Anne-Marie; Burton, Paul; Chisholm, Rex; Fortier, Isabel; Goodwin, Pat; Harris, Jennifer; Hveem, Kristian; Kaye, Jane; Kent, Alistair; Knoppers, Bartha Maria; Lindpaintner, Klaus; Little, Julian; Riegman, Peter; Ripatti, Samuli; Stolk, Ronald; Bobrow, Martin; Cambon-Thomsen, Anne; Dressler, Lynn; Joly, Yann; Kato, Kazuto; Knoppers, Bartha Maria; Rodriguez, Laura Lyman; McPherson, Treasa; Nicolás, Pilar; Ouellette, Francis; Romeo-Casabona, Carlos; Sarin, Rajiv; Wallace, Susan; Wiesner, Georgia; Wilson, Julia; Zeps, Nikolajs; Simkevitz, Howard; De Rienzo, Assunta; Knoppers, Bartha M

    2015-01-01

    The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Researchers are increasingly turning to cloud computing both as a solution to integrate data from genomics, systems biology and biomedical data mining and as an approach to analyze data to solve biomedical problems. Although cloud computing provides several benefits such as lower costs and greater efficiency, it also raises legal and ethical issues. In this article, we discuss three key ‘points to consider' (data control; data security, confidentiality and transfer; and accountability) based on a preliminary review of several publicly available cloud service providers' Terms of Service. These ‘points to consider' should be borne in mind by genomic research organizations when negotiating legal arrangements to store genomic data on a large commercial cloud service provider's servers. Diligent genomic cloud computing means leveraging security standards and evaluation processes as a means to protect data and entails many of the same good practices that researchers should always consider in securing their local infrastructure. PMID:25248396

  17. Genomics and the Public Health Code of Ethics

    PubMed Central

    Thomas, James C.; Irwin, Debra E.; Zuiker, Erin Shaugnessy; Millikan, Robert C.

    2005-01-01

    We consider the public health applications of genomic technologies as viewed through the lens of the public health code of ethics. We note, for example, the potential for genomics to increase our appreciation for the public health value of interdependence, the potential for some genomic tools to exacerbate health disparities because of their inaccessibility by the poor and the way in which genomics forces public health to refine its notions of prevention. The public health code of ethics sheds light on concerns raised by commercial genomic products that are not discussed in detail by more clinically oriented perspectives. In addition, the concerns raised by genomics highlight areas of our understanding of the ethical principles of public health in which further refinement may be necessary. PMID:16257942

  18. [Ethical and social issues associated with genomic medicine].

    PubMed

    Barazzetti, Gaia; Kaufmann, Alain; Benaroyo, Lazare

    2014-05-01

    Genomic medicine is often presented as a new paradigm for personalized healthcare. Encompassing both a translational approach in research and a vision of future medical practice, genomic medicine may have important impact on the way healthcare professionals diagnostics, treat and prevent diseases. We discuss some ethical and social issues raised by the prospect of genome-based medical practice, namely: changing definitions of disease and identity, assessment of clinical validity and utility of genome screening, mastery of genomic information by healthcare professionals and its communication to patients, and questions related to the costs of genomic medicine for future healthcare.

  19. Ethical, legal, social, and policy issues in the use of genomic technology by the U.S. Military

    PubMed Central

    Mehlman, Maxwell J.; Li, Tracy Yeheng

    2014-01-01

    Advances in genomic science are attracting the interest of the U.S. military for their potential to improve medical care for members of the military and to aid in military recruitment, training, specialization, and mission accomplishment. While researchers have explored the ethical, legal, and social issues raised by the use of genomic science in a wide variety of contexts, there has been virtually no examination of these issues in connection with the use of genomics by the military. This article identifies potential uses of genomic science by the military, proposes an applicable ethical and legal framework, and applies the framework to provide ethical and legal guidance for military decision-makers. PMID:25937933

  20. Reflections on the ethics of biomaterials science.

    PubMed

    Nicholson, John

    2013-01-01

    The subject of biomaterials science concerns artificial materials used in medical devices to repair or reconstruct natural human tissue damaged by disease or trauma. It embraces the emerging field of tissue engineering, where artificial materials are used as scaffolds to provide the architecture for replacement organs. As such, the field raises numerous ethical issues, which are reviewed in this paper. These include the use of animal models, the testing materials and devices in patients, and what may be viewed as potential abuses, where augmentation and repair are carried out for cosmetic as opposed to clinical reasons. The paper gives detailed consideration of the recent problems of metal-on-metal hip replacements as an exemplar of some of the key ethical issues that arise in this field.

  1. Ethics and science: educating the public.

    PubMed

    Brownhill, R; Merricks, L

    2002-01-01

    This article looks at the public debate which took place in the first half of the twentieth century and has repercussions to the present day. It was about the ethical stance of scientists, and how science should be organized. In particular, it examines the positions taken by Professor F. Soddy, F.R.S. and Nobel Laureate, who stressed the responsibility of scientists for the uses made of their research, Professor Michael Polanyi, F.R.S., who emphasised the obligation of scientists to the truth and the essential role of morality in the organization of science, and Professor J.D. Bernal, F.R.S., who insisted that science was practiced for utilitarian reasons and should be consciously developed for the good of society.

  2. Ethics and science: educating the public.

    PubMed

    Brownhill, R; Merricks, L

    2002-01-01

    This article looks at the public debate which took place in the first half of the twentieth century and has repercussions to the present day. It was about the ethical stance of scientists, and how science should be organized. In particular, it examines the positions taken by Professor F. Soddy, F.R.S. and Nobel Laureate, who stressed the responsibility of scientists for the uses made of their research, Professor Michael Polanyi, F.R.S., who emphasised the obligation of scientists to the truth and the essential role of morality in the organization of science, and Professor J.D. Bernal, F.R.S., who insisted that science was practiced for utilitarian reasons and should be consciously developed for the good of society. PMID:11840956

  3. Socioscience and ethics in science classrooms: Teacher perspectives and strategies

    NASA Astrophysics Data System (ADS)

    Sadler, Troy D.; Amirshokoohi, Aidin; Kazempour, Mahsa; Allspaw, Kathleen M.

    2006-04-01

    This study explored teacher perspectives on the use of socioscientific issues (SSI) and on dealing with ethics in the context of science instruction. Twenty-two middle and high school science teachers from three US states participated in semi-structured interviews, and researchers employed inductive analyses to explore emergent patterns relative to the following two questions. (1) How do science teachers conceptualize the place of ethics in science and science education? (2) How do science teachers handle topics with ethical implications and expression of their own values in their classrooms? Profiles were developed to capture the views and reported practices, relative to the place of ethics in science and science classrooms, of participants. Profile A comprising teachers who embraced the notion of infusing science curricula with SSI and cited examples of using controversial topics in their classes. Profile B participants supported SSI curricula in theory but reported significant constraints which prohibited them from actualizing these goals. Profile C described teachers who were non-committal with respect to focusing instruction on SSI and ethics. Profile D was based on the position that science and science education should be value-free. Profile E transcended the question of ethics in science education; these teachers felt very strongly that all education should contribute to their students' ethical development. Participants also expressed a wide range of perspectives regarding the expression of their own values in the classroom. Implications of this research for science education are discussed.

  4. Social sciences research: ethical and policy implications.

    PubMed

    Cohen, L K

    1977-11-01

    Ethical issues are raised about the conduct of social research in the dental field particularly with respect to the use of survey methodology and aggregated data. Problems associated with respondent identifiers, open-ended and probing questioning, privacy of subject-matter, community contamination and burden, group stereotyping, knowledge of law violations, mis-use of data banks, re-use of data, effects of disclosure, and referral for treatment are discussed. The natural and the contrived social experiments are reviewed as well as the issue of needed research on the effects of regulation on science and on the protection of privacy.

  5. Cautionary tales: ethics and case studies in science.

    PubMed

    Herreid, Clyde Freeman

    2014-12-01

    Ethical concerns are normally avoided in science classrooms in spite of the fact that many of our discoveries impinge directly on personal and societal values. We should not leave the ethical problems for another day, but deal with them using realistic case studies that challenge students at their ethical core. In this article we illustrate how case studies can be used to teach STEM students principles of ethics. PMID:25574280

  6. Cautionary Tales: Ethics and Case Studies in Science

    PubMed Central

    Herreid, Clyde Freeman

    2014-01-01

    Ethical concerns are normally avoided in science classrooms in spite of the fact that many of our discoveries impinge directly on personal and societal values. We should not leave the ethical problems for another day, but deal with them using realistic case studies that challenge students at their ethical core. In this article we illustrate how case studies can be used to teach STEM students principles of ethics. PMID:25574280

  7. Genomic research in Zambia: confronting the ethics, policy and regulatory frontiers in the 21st Century.

    PubMed

    Chanda-Kapata, Pascalina; Kapata, Nathan; Moraes, Albertina Ngomah; Chongwe, Gershom; Munthali, James

    2015-10-29

    Genomic research has the potential to increase knowledge in health sciences, but the process has to ensure the safety, integrity and well-being of research participants. A legal framework for the conduct of health research in Zambia is available. However, the ethical, policy and regulatory framework to operationalise genomic research requires a paradigm shift. This paper outlines the current legal and policy framework as well as the ethics environment, and suggests recommendations for Zambia to fully benefit from the opportunity that genomic research presents. This will entail creating national research interest, improving knowledge levels, and building community trust among researchers, policymakers, donors, regulators and, most importantly, patients and research participants. A real balancing act of the risk and benefits will need to be objectively undertaken.

  8. Virtue ethics, positive psychology, and a new model of science and engineering ethics education.

    PubMed

    Han, Hyemin

    2015-04-01

    This essay develops a new conceptual framework of science and engineering ethics education based on virtue ethics and positive psychology. Virtue ethicists and positive psychologists have argued that current rule-based moral philosophy, psychology, and education cannot effectively promote students' moral motivation for actual moral behavior and may even lead to negative outcomes, such as moral schizophrenia. They have suggested that their own theoretical framework of virtue ethics and positive psychology can contribute to the effective promotion of motivation for self-improvement by connecting the notion of morality and eudaimonic happiness. Thus this essay attempts to apply virtue ethics and positive psychology to science and engineering ethics education and to develop a new conceptual framework for more effective education. In addition to the conceptual-level work, this essay suggests two possible educational methods: moral modeling and involvement in actual moral activity in science and engineering ethics classes, based on the conceptual framework.

  9. Objectivity and ethics in environmental health science.

    PubMed

    Wing, Steve

    2003-11-01

    During the past several decades, philosophers of science and scientists themselves have become increasingly aware of the complex ways in which scientific knowledge is shaped by its social context. This awareness has called into question traditional notions of objectivity. Working scientists need an understanding of their own practice that avoids the naïve myth that science can become objective by avoiding social influences as well as the reductionist view that its content is determined simply by economic interests. A nuanced perspective on this process can improve research ethics and increase the capacity of science to contribute to equitable public policy, especially in areas such as environmental and occupational health, which have direct implications for profits, regulation, legal responsibility, and social justice. I discuss research into health effects of the 1979 accident at Three Mile Island near Harrisburg, Pennsylvania, USA, as an example of how scientific explanations are shaped by social concepts, norms, and preconceptions. I describe how a scientific practice that developed under the influence of medical and nuclear physics interacted with observations made by exposed community members to affect research questions, the interpretation of evidence, inferences about biological mechanisms in disease causation, and the use of evidence in litigation. By considering the history and philosophy of their disciplines, practicing researchers can increase the rigor, objectivity, and social responsibility of environmental health science. PMID:14594636

  10. The ethics and science of medicating children.

    PubMed

    Sparks, Jacqueline A; Duncan, Barry L

    2004-01-01

    Prescriptions for psychiatric drugs to children and adolescents have skyrocketed in the past 10 years. This article presents evidence that the superior effectiveness of stimulants and antidepressants is largely a presumption based on an empirical house of cards, driven by an industry that has no conscience about the implications of its ever growing, and disturbingly younger, list of consumers. Recognizing that most mental health professionals do not have the time, and sometimes feel ill-equipped to explore the controversy regarding pharmacological treatment of children, this article discusses the four fatal flaws of drug studies to enable critical examination of research addressing the drugging of children. The four flaws are illustrated by the Emslie studies of Prozac and children, which offer not only a strident example of marketing masquerading as science, but also, given the recent FDA approval of Prozac for children, a brutal reminder of the danger inherent in not knowing how to distinguish science from science fiction. The authors argue that an ethical path requires the challenge of the automatic medical response to medicate children, with an accompanying demand for untainted science and balanced information to inform critical decisions by child caretakers.

  11. Objectivity and ethics in environmental health science.

    PubMed Central

    Wing, Steve

    2003-01-01

    During the past several decades, philosophers of science and scientists themselves have become increasingly aware of the complex ways in which scientific knowledge is shaped by its social context. This awareness has called into question traditional notions of objectivity. Working scientists need an understanding of their own practice that avoids the naïve myth that science can become objective by avoiding social influences as well as the reductionist view that its content is determined simply by economic interests. A nuanced perspective on this process can improve research ethics and increase the capacity of science to contribute to equitable public policy, especially in areas such as environmental and occupational health, which have direct implications for profits, regulation, legal responsibility, and social justice. I discuss research into health effects of the 1979 accident at Three Mile Island near Harrisburg, Pennsylvania, USA, as an example of how scientific explanations are shaped by social concepts, norms, and preconceptions. I describe how a scientific practice that developed under the influence of medical and nuclear physics interacted with observations made by exposed community members to affect research questions, the interpretation of evidence, inferences about biological mechanisms in disease causation, and the use of evidence in litigation. By considering the history and philosophy of their disciplines, practicing researchers can increase the rigor, objectivity, and social responsibility of environmental health science. PMID:14594636

  12. Virtue and the scientist: using virtue ethics to examine science's ethical and moral challenges.

    PubMed

    Chen, Jiin-Yu

    2015-02-01

    As science has grown in size and scope, it has also presented a number of ethical and moral challenges. Approaching these challenges from an ethical framework can provide guidance when engaging with them. In this article, I place science within a virtue ethics framework, as discussed by Aristotle. By framing science within virtue ethics, I discuss what virtue ethics entails for the practicing scientist. Virtue ethics holds that each person should work towards her conception of flourishing where the virtues enable her to realize that conception. The virtues must become part of the scientist's character, undergirding her intentions and motivations, as well as the resulting decisions and actions. The virtue of phronêsis, or practical wisdom, is critical for cultivating virtue, enabling the moral agent to discern the appropriate actions for a particular situation. In exercising phronêsis, the scientist considers the situation from multiple perspectives for an in-depth and nuanced understanding of the situation, discerns the relevant factors, and settles upon an appropriate decision. I examine goods internal to a practice, which are constitutive of science practiced well and discuss the role of phronêsis when grappling with science's ethical and moral features and how the scientist might exercise it. Although phronêsis is important for producing scientific knowledge, it is equally critical for working through the moral and ethical questions science poses.

  13. On teaching computer ethics within a computer science department.

    PubMed

    Quinn, Michael J

    2006-04-01

    The author has surveyed a quarter of the accredited undergraduate computer science programs in the United States. More than half of these programs offer a 'social and ethical implications of computing' course taught by a computer science faculty member, and there appears to be a trend toward teaching ethics classes within computer science departments. Although the decision to create an 'in house' computer ethics course may sometimes be a pragmatic response to pressure from the accreditation agency, this paper argues that teaching ethics within a computer science department can provide students and faculty members with numerous benefits. The paper lists topics that can be covered in a computer ethics course and offers some practical suggestions for making the course successful.

  14. Genomics for public health improvement: relevant international ethical and policy issues around genome-wide association studies and biobanks.

    PubMed

    Pang, T

    2013-01-01

    Genome-wide association studies and biobanks are at the forefront of genomics research and possess unprecedented potential to improve public health. However, for public health genomics to ultimately fulfill its potential, technological and scientific advances alone are insufficient. Scientists, ethicists, policy makers, and regulators must work closely together with research participants and communities in order to craft an equitable and just ethical framework, and a sustainable environment for effective policies. Such a framework should be a 'hybrid' form which balances equity and solidarity with entrepreneurship and scientific advances. A good balance between research and policy on one hand, and privacy, protection and trust on the other is the key for public health improvement based on advances in genomics science.

  15. Ethical issues in genomic research on the African continent: experiences and challenges to ethics review committees.

    PubMed

    Ramsay, Michèle; de Vries, Jantina; Soodyall, Himla; Norris, Shane A; Sankoh, Osman

    2014-01-01

    This is a report on a workshop titled 'Ethics for genomic research across five African countries: Guidelines, experiences and challenges', University of the Witwatersrand, Johannesburg, South Africa, 10 and 11 December 2012. The workshop was hosted by the Wits-INDEPTH partnership, AWI-Gen, as part of the H3Africa Consortium.

  16. Teaching science and ethics to undergraduates: a multidisciplinary approach.

    PubMed

    McGowan, Alan H

    2013-06-01

    The teaching of the ethical implications of scientific advances in science courses for undergraduates has significant advantages for both science and non-science majors. The article describes three courses taught by the author as examples of the concept, and examines the disadvantages as well as the advantages. A significant advantage of this approach is that many students take the courses primarily because of the ethical component who would not otherwise take science. A disadvantage is less time in the course for the science; arguably, this is outweighed by the greater retention of the science when it is put into context.

  17. Research Ethics in the Era of Personalized Medicine: Updating Science's Contract with Society

    PubMed Central

    Meslin, Eric M.; Cho, Mildred K.

    2010-01-01

    With the completed sequence of the human genome has come the prospect of substantially improving the quality of life for millions through personalized medicine approaches. Still, any advances in this direction require research involving human subjects. For decades science and ethics have enjoyed an allegiance reflected in a common set of ethical principles and procedures guiding the conduct of research with human subjects. Some of these principles emphasize avoiding harm over maximizing benefit. In this paper we revisit the priority given to these ethical principles – particularly the principles that support a cautious approach to science – and propose a reframing of the ‘social contract’ between science and society that emphasizes reciprocity and meeting public needs. PMID:20805701

  18. Science and Ethics: Some Issues for Education.

    ERIC Educational Resources Information Center

    Andrew, Jennifer; Robottom, Ian

    2001-01-01

    Ethical issues concerning pain and suffering of animals are necessarily a consideration in killing pest or feral species in Australia, but ethical issues are reduced to a secondary consideration and appear to be at odds with scientific agendas. Suggests that a greater understanding of various perspectives on the subject of environmental ethics may…

  19. Ecotoxicity testing: science, politics and ethics.

    PubMed

    Walker, Colin H

    2008-02-01

    Animal welfare organisations have long been concerned about the use of animals for ecotoxicity testing. Ecotoxicity testing is a necessary part of the statutory risk assessment of chemicals that may be released into the environment. It is sometimes also carried out during the development of new chemicals and in the investigation of pollution in the field. This review considers the existing requirements for ecotoxicity testing, with particular reference to practices in the European Union, including the recent REACH system proposals, before discussing criticisms that have been made of existing practices for environmental risk assessment. These criticisms have been made on scientific and ethical grounds, as well as on questions of cost. A case is made for greater investment in the development of alternative testing methods, which could improve the science, as well as serving the cause of animal welfare. It has frequently been suggested that the statutory requirements for environmental risk assessment are too rigid and bureaucratic. A case is made for flexibility and the greater involvement of scientists in the risk assessment procedure, in the interests of both improved science and improved animal welfare.

  20. Teaching the Ethical Aspects of Environmental Science

    NASA Astrophysics Data System (ADS)

    Palinkas, C. M.

    2014-12-01

    Environmental and societal issues are often inherently linked, especially in coastal and estuarine environments, and science and social values must often be balanced in ecosystem management and decision-making. A new seminar course has been developed for the Marine Estuarine and Environmental Science (MEES) graduate program, an inter-institutional program within the University System of Maryland, to examine these issues. This 1-credit course, offered for the first time in Spring 2015, takes a complex systems perspective on major environmental and societal challenges to examine these linked issues in a variety of contexts. After a brief introduction to the emerging field of "geoethics," students develop a list of issues to examine throughout the seminar. Example topics could include fracking, offshore wind technology, dam removal, and iron fertilization, among others. A case-study approach is taken, with each class meeting focusing on one issue. For each case study, students are asked to 1) identify relevant scientific principles and major knowledge gaps, 2) predict potential outcomes, 3) identify stakeholders and likely viewpoints, and 4) construct communication plans to disseminate findings to these stakeholders. At the end of the semester, students give a brief presentation of the ethical aspects of their own research topics.

  1. Science, human nature, and a new paradigm for ethics education.

    PubMed

    Lampe, Marc

    2012-09-01

    For centuries, religion and philosophy have been the primary basis for efforts to guide humans to be more ethical. However, training in ethics and religion and imparting positive values and morality tests such as those emanating from the categorical imperative and the Golden Rule have not been enough to protect humankind from its bad behaviors. To improve ethics education educators must better understand aspects of human nature such as those that lead to "self-deception" and "personal bias." Through rationalizations, faulty reasoning and hidden bias, individuals trick themselves into believing there is little wrong with their own unethical behavior. The application of science to human nature offers the possibility of improving ethics education through better self-knowledge. The author recommends a new paradigm for ethics education in contemporary modern society. This includes the creation of a new field called "applied evolutionary neuro-ethics" which integrates science and social sciences to improve ethics education. The paradigm can merge traditional thinking about ethics from religious and philosophical perspectives with new ideas from applied evolutionary neuro-ethics.

  2. Science, human nature, and a new paradigm for ethics education.

    PubMed

    Lampe, Marc

    2012-09-01

    For centuries, religion and philosophy have been the primary basis for efforts to guide humans to be more ethical. However, training in ethics and religion and imparting positive values and morality tests such as those emanating from the categorical imperative and the Golden Rule have not been enough to protect humankind from its bad behaviors. To improve ethics education educators must better understand aspects of human nature such as those that lead to "self-deception" and "personal bias." Through rationalizations, faulty reasoning and hidden bias, individuals trick themselves into believing there is little wrong with their own unethical behavior. The application of science to human nature offers the possibility of improving ethics education through better self-knowledge. The author recommends a new paradigm for ethics education in contemporary modern society. This includes the creation of a new field called "applied evolutionary neuro-ethics" which integrates science and social sciences to improve ethics education. The paradigm can merge traditional thinking about ethics from religious and philosophical perspectives with new ideas from applied evolutionary neuro-ethics. PMID:22711449

  3. Ethics Instruction in Library and Information Science: The Role of "Ethics across the Curriculum"

    ERIC Educational Resources Information Center

    Smith, Bernie Todd

    2010-01-01

    Ethics is an important element of most graduate professional training programs. In the field of Library and Information Science (LIS) the inclusion of ethics in the curriculum is supported by a position paper by library educators and is monitored in the accreditation of graduate programs. Despite the many LIS programs which claim to integrate…

  4. Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?

    PubMed

    Ilkilic, Ilhan; Paul, Norbert W

    2009-03-01

    The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural-philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research. PMID:18592399

  5. Ethical and legal aspects of applied genomic technologies: practical solutions.

    PubMed

    Manasco, Penelope K

    2005-02-01

    Many ethical and legal issues surround genomic technologies, some of which are present for other kinds of medical data, but some of which are specific to genomic data. Specifically the global nature of genomic data and the life-long implications of genetic defects on the health of the individual subject produce challenges in the ethical and legal handling of this data. In general, data derived from transcriptome analysis, which studies gene expression, as well as proteomics and metabolomics, carry less ethically-charged information than measures of the germ line genome. However, theoretical issues that have been raised related to withholding therapy based on a specific genotype which could also apply to a specific expression profile. Potential solutions for these challenges are discussed, such as maintaining a connection with research participants through a trusted third party, using electronic means to manage that contact and reconsent subjects. A flexible, secure information technology infrastructure is proposed to manage and search consent forms, provide the ability to collect additional data and consent while maintaining participant confidentiality.

  6. Impact of an Ethics Programme in a Life Sciences Curriculum

    ERIC Educational Resources Information Center

    Clarkeburn, Henriikka; Downie, J. Roger; Matthew, Bob

    2002-01-01

    Choices in science--allocation of research funds, selection of research topics, interaction with research subjects (animals, environment, other humans), etc.--often, if not always, include some ethical considerations. Future scientists need skills to deal with and discuss ethical problems, and for that reason we have developed and evaluated one…

  7. Brain Science of Ethics: Present Status and the Future

    ERIC Educational Resources Information Center

    Aoki, Ryuta; Funane, Tsukasa; Koizumi, Hideaki

    2010-01-01

    Recent advances in technologies for neuroscientific research enable us to investigate the neurobiological substrates of the human ethical sense. This article introduces several findings in "the brain science of ethics" obtained through "brain-observation" and "brain-manipulation" approaches. Studies over the past decade have revealed that several…

  8. ETHICS AND JUSTICE IN ENVIRONMENTAL SCIENCE AND ENGINEERING

    EPA Science Inventory

    Science and engineering are built on trust. C.P. Snow's famous quote, "the only ethical principle which has made science possible is that the truth shall be told all the time" underscores the importance of honesty in science. Environmental scientists must do work that is useful...

  9. Integrating Ethics in Science into a Summer Undergraduate Research Program

    NASA Astrophysics Data System (ADS)

    Shachter, Amy M.

    2003-05-01

    We describe the development, implementation, and assessment of an Ethics in Science program as a component of a summer undergraduate research site. The goals and course content of the program overlap with those outlined in the proposed Office of Research Integrity Public Health Service Policy on Instruction in the Responsible Conduct of Research (RCR). The Ethics in Science program provides a model for RCR instructional programs.

  10. Human genome and open source: balancing ethics and business.

    PubMed

    Marturano, Antonio

    2011-01-01

    The Human Genome Project has been completed thanks to a massive use of computer techniques, as well as the adoption of the open-source business and research model by the scientists involved. This model won over the proprietary model and allowed a quick propagation and feedback of research results among peers. In this paper, the author will analyse some ethical and legal issues emerging by the use of such computer model in the Human Genome property rights. The author will argue that the Open Source is the best business model, as it is able to balance business and human rights perspectives.

  11. The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute: reflections on an ongoing experiment.

    PubMed

    McEwen, Jean E; Boyer, Joy T; Sun, Kathie Y; Rothenberg, Karen H; Lockhart, Nicole C; Guyer, Mark S

    2014-01-01

    For more than 20 years, the Ethical, Legal, and Social Implications (ELSI) Program of the National Human Genome Research Institute has supported empirical and conceptual research to anticipate and address the ethical, legal, and social implications of genomics. As a component of the agency that funds much of the underlying science, the program has always been an experiment. The ever-expanding number of issues the program addresses and the relatively low level of commitment on the part of other funding agencies to support such research make setting priorities especially challenging. Program-supported studies have had a significant impact on the conduct of genomics research, the implementation of genomic medicine, and broader public policies. The program's influence is likely to grow as ELSI research, genomics research, and policy development activities become increasingly integrated. Achieving the benefits of increased integration while preserving the autonomy, objectivity, and intellectual independence of ELSI investigators presents ongoing challenges and new opportunities.

  12. What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.

    PubMed

    Henderson, Gail E; Juengst, Eric T; King, Nancy M P; Kuczynski, Kristine; Michie, Marsha

    2012-01-01

    Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square." PMID:23289702

  13. Can ethics survive the onslaught of science?

    PubMed

    Lupton, Michael

    2013-09-01

    The issue on which I will attempt to cast some light is certainly not novel. It has been ongoing for many years but the pace of scientific progress is gathering and the retreat of ethical barriers is relentless. I will illustrate my thesis by using examples of legal decisions from the realm of assisted human procreation and the posthumous conception of children from the sperm of deceased fathers e.g., the cases of Diane Blood, Parpalaix and Nikolas Coltan Evans. I will also highlight the recent case of Ashley X, a nine year old girl whose parents authorised radical medical treatment to arrest her development. I will argue that the law is being driven to roll back the ethical standards derived from our legacy of Natural Law by the imperatives of human rights e.g., the right to found a family, and the quest for patient autonomy. These are both admirable goals but fulfilling these goals comes at a cost to cherished ethical values e.g., that children are conceived by living fathers and that indulging the personal desires of every individual cannot forever be encompassed. As our legislators and courts chip away at our core network of ethical values, are they replacing them with equivalent values or do their decisions amount to a hollowing out of the core ethical values e.g., Thou shalt not kill and that human life is sacrosanct? Yet abortion is legal in many countries as is euthanasia. Paradoxically there is legislative protection for embryos by limiting experimentation on these clusters of cells. How do you construct a rational ethical framework with such blatant legal inconsistencies in the protection of human life? The sanctity of human life constitutes one of the fundamental pillars of ethical values which, in turn, support much more of the structure of ethics. Is a society that permits freezing the development of a nine year old child not a society whose ethics are so compromised that it is doomed to defend an ever diminishing mass of ethical values? Is there a

  14. Can ethics survive the onslaught of science?

    PubMed

    Lupton, Michael

    2013-09-01

    The issue on which I will attempt to cast some light is certainly not novel. It has been ongoing for many years but the pace of scientific progress is gathering and the retreat of ethical barriers is relentless. I will illustrate my thesis by using examples of legal decisions from the realm of assisted human procreation and the posthumous conception of children from the sperm of deceased fathers e.g., the cases of Diane Blood, Parpalaix and Nikolas Coltan Evans. I will also highlight the recent case of Ashley X, a nine year old girl whose parents authorised radical medical treatment to arrest her development. I will argue that the law is being driven to roll back the ethical standards derived from our legacy of Natural Law by the imperatives of human rights e.g., the right to found a family, and the quest for patient autonomy. These are both admirable goals but fulfilling these goals comes at a cost to cherished ethical values e.g., that children are conceived by living fathers and that indulging the personal desires of every individual cannot forever be encompassed. As our legislators and courts chip away at our core network of ethical values, are they replacing them with equivalent values or do their decisions amount to a hollowing out of the core ethical values e.g., Thou shalt not kill and that human life is sacrosanct? Yet abortion is legal in many countries as is euthanasia. Paradoxically there is legislative protection for embryos by limiting experimentation on these clusters of cells. How do you construct a rational ethical framework with such blatant legal inconsistencies in the protection of human life? The sanctity of human life constitutes one of the fundamental pillars of ethical values which, in turn, support much more of the structure of ethics. Is a society that permits freezing the development of a nine year old child not a society whose ethics are so compromised that it is doomed to defend an ever diminishing mass of ethical values? Is there a

  15. [Ethical issues of personal genome: a legal perspective--ethical and legal ramifications of personal genome research].

    PubMed

    Maruyama, Eiji

    2009-06-01

    Whole-genome research projects, especially those involving whole-genome sequencing, tend to raise intractable ethical and legal challenges. In this kind of research, genetic and genomic data obtained by typing or sequencing are usually put in open or limited access scientific databases on the Internet to promote studies by many researchers. Once data become available on the Internet, it will be virtually meaningless to withdraw the information, effectively nullifying participants' right to revoke consent. Although the author favors the governance system that will assure research subjects of the right to withdraw their participation, considering these characteristics of whole-genome research, he finds those recommendations offered in Caulfield T, et al: Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol 6(3): e73(2008), especially to the effect that the consent process should include information about data security and the governance structure and, in particular, the mechanism for considering future research protocols, well reasoned and acceptable. PMID:19507516

  16. [Ethical issues of personal genome: a legal perspective--ethical and legal ramifications of personal genome research].

    PubMed

    Maruyama, Eiji

    2009-06-01

    Whole-genome research projects, especially those involving whole-genome sequencing, tend to raise intractable ethical and legal challenges. In this kind of research, genetic and genomic data obtained by typing or sequencing are usually put in open or limited access scientific databases on the Internet to promote studies by many researchers. Once data become available on the Internet, it will be virtually meaningless to withdraw the information, effectively nullifying participants' right to revoke consent. Although the author favors the governance system that will assure research subjects of the right to withdraw their participation, considering these characteristics of whole-genome research, he finds those recommendations offered in Caulfield T, et al: Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol 6(3): e73(2008), especially to the effect that the consent process should include information about data security and the governance structure and, in particular, the mechanism for considering future research protocols, well reasoned and acceptable.

  17. Development and Implementation of Science and Technology Ethics Education Program for Prospective Science Teachers

    ERIC Educational Resources Information Center

    Rhee, Hyang-yon; Choi, Kyunghee

    2014-01-01

    The purposes of this study were (1) to develop a science and technology (ST) ethics education program for prospective science teachers, (2) to examine the effect of the program on the perceptions of the participants, in terms of their ethics and education concerns, and (3) to evaluate the impact of the program design. The program utilized…

  18. SciEthics Interactive: Science and Ethics Learning in a Virtual Environment

    ERIC Educational Resources Information Center

    Nadolny, Larysa; Woolfrey, Joan; Pierlott, Matthew; Kahn, Seth

    2013-01-01

    Learning in immersive 3D environments allows students to collaborate, build, and interact with difficult course concepts. This case study examines the design and development of the TransGen Island within the SciEthics Interactive project, a National Science Foundation-funded, 3D virtual world emphasizing learning science content in the context of…

  19. TUTORIAL: 'Mind the gap': science and ethics in nanotechnology

    NASA Astrophysics Data System (ADS)

    Mnyusiwalla, Anisa; Daar, Abdallah S.; Singer, Peter A.

    2003-03-01

    Nanotechnology (NT) is a rapidly progressing field. Advances will have a tremendous impact on fields such as materials, electronics, and medicine. A thorough review of the current literature, governmental funding, and policy documents was undertaken. Despite the potential impact of NT, and the abundance of funds, our research revealed that there is a paucity of serious, published research into the ethical, legal, and social implications of NT. As the science leaps ahead, the ethics lags behind. There is danger of derailing NT if the study of ethical, legal, and social implications does not catch up with the speed of scientific development.

  20. How a Deweyan science education further enables ethics education

    NASA Astrophysics Data System (ADS)

    Webster, Scott

    2008-09-01

    This paper questions the perceived divide between ‘science’ subject matter and ‘moral’ or ‘ethical’ subject matter. A difficulty that this assumed divide produces is that science teachers often feel that there needs to be ‘special treatment’ given to certain issues which are of an ethical or moral nature and which are ‘brought into’ the science class. The case is made in this article that dealing with ethical issues in the science class should not call for a sensitivity that is beyond the expertise of the science teacher. Indeed it is argued here that science teachers in particular have a great deal to offer in enabling ethics education. To overcome this perceived divide between science and values it needs to be recognised that the educative development of learners is both scientific and moral. I shall be using a Deweyan perspective to make the case that we as science teachers can overcome this apparent divide and significantly contribute to an ethics education of our students.

  1. Science, ethics and war: a pacifist's perspective.

    PubMed

    Kovac, Jeffrey

    2013-06-01

    This article considers the ethical aspects of the question: should a scientist engage in war-related research, particularly use-inspired or applied research directed at the development of the means for the better waging of war? Because scientists are simultaneously professionals, citizens of a particular country, and human beings, they are subject to conflicting moral and practical demands. There are three major philosophical views concerning the morality of war that are relevant to this discussion: realism, just war theory and pacifism. In addition, the requirements of professional codes of ethics and common morality contribute to an ethical analysis of the involvement of scientists and engineers in war-related research and technology. Because modern total warfare, which is facilitated by the work of scientists and engineers, results in the inevitable killing of innocents, it follows that most, if not all, war-related research should be considered at least as morally suspect and probably as morally prohibited.

  2. Effects of Teaching Ethical Issues on Korean School Students' Attitudes towards Science.

    ERIC Educational Resources Information Center

    Choi, Kyunghee; Cho, Hee-Hyung

    2002-01-01

    Examines the effects of formal teaching of ethical issues related to science on middle school students' attitudes towards science and science achievement. Reports that teaching ethical issues in science had a positive influence on the students' attitudes toward science, specifically the interest level in science and perception of the practicality…

  3. From 'implications' to 'dimensions': science, medicine and ethics in society.

    PubMed

    Pickersgill, Martyn D

    2013-03-01

    Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with 'ethics', and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more 'traditional' modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society. PMID:22948440

  4. From 'implications' to 'dimensions': science, medicine and ethics in society.

    PubMed

    Pickersgill, Martyn D

    2013-03-01

    Much bioethical scholarship is concerned with the social, legal and philosophical implications of new and emerging science and medicine, as well as with the processes of research that under-gird these innovations. Science and technology studies (STS), and the related and interpenetrating disciplines of anthropology and sociology, have also explored what novel technoscience might imply for society, and how the social is constitutive of scientific knowledge and technological artefacts. More recently, social scientists have interrogated the emergence of ethical issues: they have documented how particular matters come to be regarded as in some way to do with 'ethics', and how this in turn enjoins particular types of social action. In this paper, I will discuss some of this and other STS (and STS-inflected) literature and reflect on how it might complement more 'traditional' modes of bioethical enquiry. I argue that STS might (1) cast new light on current bioethical issues, (2) direct the gaze of bioethicists towards matters that may previously have escaped their attention, and (3) indicate the import not only of the ethical implications of biomedical innovation, but also how these innovative and other processes feature ethics as a dimension of everyday laboratory and clinical work. In sum, engagements between STS and bioethics are increasingly important in order to understand and manage the complex dynamics between science, medicine and ethics in society.

  5. A decision tool to guide the ethics review of a challenging breed of emerging genomic projects.

    PubMed

    Joly, Yann; So, Derek; Osien, Gladys; Crimi, Laura; Bobrow, Martin; Chalmers, Don; Wallace, Susan E; Zeps, Nikolajs; Knoppers, Bartha

    2016-08-01

    Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science. As few ethics review policies take these changes into account, it is often difficult to determine the appropriate level of review. Mislabeling can result in unnecessary burdens for the investigators or, conversely, in underestimation of the risks to participants. Therefore, it is important to develop a consistent method of selecting the review process for genomics and bioinformatics projects. This paper begins by discussing two case studies from the ICGC, followed by a literature review on the distinction between QA and research and a comparative analysis of ethics review policies from Canada, the United States, the United Kingdom, and Australia. These results are synthesized into a novel two-step decision tool for researchers and policymakers, which uses traditional criteria to sort clearly defined activities while requiring the use of actual risk levels to decide more complex cases. PMID:26785834

  6. [Training of managers and politicians in ethics of science and ethics of public health].

    PubMed

    Beaudry, Nicole

    2013-01-01

    First of all, I will identify the various possible objectives of training in ethics of science and health. I will then examine the institutional context in which managers and politicians act in the light of what is done in Quebec. This analysis will lead me to defend the thesis that in Quebec at least such training is necessary.

  7. A quantitative perspective on ethics in large team science.

    PubMed

    Petersen, Alexander M; Pavlidis, Ioannis; Semendeferi, Ioanna

    2014-12-01

    The gradual crowding out of singleton and small team science by large team endeavors is challenging key features of research culture. It is therefore important for the future of scientific practice to reflect upon the individual scientist's ethical responsibilities within teams. To facilitate this reflection we show labor force trends in the US revealing a skewed growth in academic ranks and increased levels of competition for promotion within the system; we analyze teaming trends across disciplines and national borders demonstrating why it is becoming difficult to distribute credit and to avoid conflicts of interest; and we use more than a century of Nobel prize data to show how science is outgrowing its old institutions of singleton awards. Of particular concern within the large team environment is the weakening of the mentor-mentee relation, which undermines the cultivation of virtue ethics across scientific generations. These trends and emerging organizational complexities call for a universal set of behavioral norms that transcend team heterogeneity and hierarchy. To this end, our expository analysis provides a survey of ethical issues in team settings to inform science ethics education and science policy.

  8. A Question of Ethics: Themes in the Science Fiction Genre.

    ERIC Educational Resources Information Center

    McNurlin, Kathleen Woitel

    1995-01-01

    Continues an article that began in the summer 1995 "Interdisciplinary Humanities." Examines ethical concerns about nuclear power, societal control, and prejudice articulated in science fiction literature. Authors studied include Ray Bradbury, Philip K. Dick, and Damon Knight. The earlier article covered literature concerned with ecology and…

  9. A quantitative perspective on ethics in large team science.

    PubMed

    Petersen, Alexander M; Pavlidis, Ioannis; Semendeferi, Ioanna

    2014-12-01

    The gradual crowding out of singleton and small team science by large team endeavors is challenging key features of research culture. It is therefore important for the future of scientific practice to reflect upon the individual scientist's ethical responsibilities within teams. To facilitate this reflection we show labor force trends in the US revealing a skewed growth in academic ranks and increased levels of competition for promotion within the system; we analyze teaming trends across disciplines and national borders demonstrating why it is becoming difficult to distribute credit and to avoid conflicts of interest; and we use more than a century of Nobel prize data to show how science is outgrowing its old institutions of singleton awards. Of particular concern within the large team environment is the weakening of the mentor-mentee relation, which undermines the cultivation of virtue ethics across scientific generations. These trends and emerging organizational complexities call for a universal set of behavioral norms that transcend team heterogeneity and hierarchy. To this end, our expository analysis provides a survey of ethical issues in team settings to inform science ethics education and science policy. PMID:24919946

  10. The impact of institutional ethics on academic health sciences library leadership: a survey of academic health sciences library directors

    PubMed Central

    Tooey, Mary Joan (M.J.); Arnold, Gretchen N.

    2014-01-01

    Ethical behavior in libraries goes beyond service to users. Academic health sciences library directors may need to adhere to the ethical guidelines and rules of their institutions. Does the unique environment of an academic health center imply different ethical considerations? Do the ethical policies of institutions affect these library leaders? Do their personal ethical considerations have an impact as well? In December 2013, a survey regarding the impact of institutional ethics was sent to the director members of the Association of Academic Health Sciences Libraries. The objective was to determine the impact of institutional ethics on these leaders, whether through personal conviction or institutional imperative. PMID:25349542

  11. The impact of institutional ethics on academic health sciences library leadership: a survey of academic health sciences library directors.

    PubMed

    Tooey, Mary Joan M J; Arnold, Gretchen N

    2014-10-01

    Ethical behavior in libraries goes beyond service to users. Academic health sciences library directors may need to adhere to the ethical guidelines and rules of their institutions. Does the unique environment of an academic health center imply different ethical considerations? Do the ethical policies of institutions affect these library leaders? Do their personal ethical considerations have an impact as well? In December 2013, a survey regarding the impact of institutional ethics was sent to the director members of the Association of Academic Health Sciences Libraries. The objective was to determine the impact of institutional ethics on these leaders, whether through personal conviction or institutional imperative.

  12. Emphasizing Morals, Values, Ethics, and Character Education in Science Education and Science Teaching

    ERIC Educational Resources Information Center

    Chowdhury, Mohammad

    2016-01-01

    This article presents the rationale and arguments for the presence of morals, values, ethics and character education in science curriculum and science teaching. The author examines how rapid science and technological advancements and globalization are contributing to the complexities of social life and underpinning the importance of morals, values…

  13. Stem cells: science, policy, and ethics.

    PubMed

    Fischbach, Gerald D; Fischbach, Ruth L

    2004-11-01

    Human embryonic stem cells offer the promise of a new regenerative medicine in which damaged adult cells can be replaced with new cells. Research is needed to determine the most viable stem cell lines and reliable ways to promote the differentiation of pluripotent stem cells into specific cell types (neurons, muscle cells, etc). To create new cell lines, it is necessary to destroy preimplantation blastocysts. This has led to an intense debate that threatens to limit embryonic stem cell research. The profound ethical issues raised call for informed, dispassionate debate.

  14. Nutrition and food science go genomic.

    PubMed

    Rist, Manuela J; Wenzel, Uwe; Daniel, Hannelore

    2006-04-01

    The wealth of genomic information and high-throughput profiling technologies are now being exploited by scientists in the disciplines of nutrition and food science. Diet and food components are prime environmental factors that affect the genome, transcriptome, proteome and metabolome, and this life-long interaction defines the health or disease state of an individual. For the first time the interaction of foods, and individual food constituents, with the biological systems can be defined on a molecular basis. Profiling technologies are used in basic-science applications for identifying the mode of action of foods or particular ingredients, and are similarly taken into the science-driven development of foods with a defined biofunctionality. Biomarker profiles and patterns derived from genomics applications in humans should guide nutrition and food science in developing evidence-based dietary recommendations and health-promoting foods.

  15. Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements.

    PubMed

    Newson, Ainsley J; Schonstein, Lisa

    2016-10-01

    Genomic testing is rapidly becoming established in clinical practice and research. In this paper we consider the ethical issues arising in genomic testing in children, focusing on the clinical context. After describing how genomics can be said to depart from genetics in ethically relevant ways, we introduce two case studies involving ethical issues in paediatric genomic testing. We then summarise and critically engage with recent professional statements regarding genomic testing in children; notably the 2015 position statement from the American Society for Human Genetics. To provide a conceptual framework for these debates, we then synthesise recent bioethics literature regarding appropriate concepts to use when making decisions regarding children, and applying them to genomic testing. We recommend an approach to genomic testing in children that is child-focused and flexibly applied, driven by a core clinical question. Finally, we examine the role that age and emerging capacity should play in these debates. PMID:27251403

  16. Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements.

    PubMed

    Newson, Ainsley J; Schonstein, Lisa

    2016-10-01

    Genomic testing is rapidly becoming established in clinical practice and research. In this paper we consider the ethical issues arising in genomic testing in children, focusing on the clinical context. After describing how genomics can be said to depart from genetics in ethically relevant ways, we introduce two case studies involving ethical issues in paediatric genomic testing. We then summarise and critically engage with recent professional statements regarding genomic testing in children; notably the 2015 position statement from the American Society for Human Genetics. To provide a conceptual framework for these debates, we then synthesise recent bioethics literature regarding appropriate concepts to use when making decisions regarding children, and applying them to genomic testing. We recommend an approach to genomic testing in children that is child-focused and flexibly applied, driven by a core clinical question. Finally, we examine the role that age and emerging capacity should play in these debates.

  17. Does science need bioethicists? Ethics and science collaboration in biomedical research

    PubMed Central

    Kerasidou, Angeliki; Parker, Michael

    2015-01-01

    Biomedical research is an increasingly multidisciplinary activity bringing together a range of different academic fields and forms of expertise to investigate diseases that are increasingly understood to be complex and multifactorial. Recently the discipline of ethics has been starting to find a place in large-scale biomedical collaborations. In this article we draw from our experience of working with the Malaria Genomic Epidemiology Network (MalariaGEN) and other research projects to reflect upon the integration of ethics into biomedical research. We examine the way in which ethics input may be valuable to research, the forms it tends to take, and also the problems and limitations of such collaborations. PMID:26430467

  18. Genomic Sciences for Developmentalists: A Merge of Science and Practice

    ERIC Educational Resources Information Center

    Grigorenko, Elena L.

    2015-01-01

    The etiological forces of development have been a central question for the developmental sciences (however defined) since their crystallization as a distinct branch of scientific inquiry. Although the history of these sciences contains examples of extreme positions capitalizing on either the predominance of the genome (i.e., the accumulation of…

  19. Ethical issues in international collaborative research on the human genome: The HGP and the HGDP

    SciTech Connect

    Knoppers, B.M.; Hirtle, M.; Lormeau, S.

    1996-06-01

    This special feature describes the ethical issues in international collaborative research on the human genome, both regarding the Human Genome Project (HGP), which is concerned with genetic mapping, and the Human Genome Diversity Project (HGDP), which is an effort to document the genetic variation of the human species worldwide. 88 refs.

  20. Evaluating the Effectiveness of a Formal Ethics Component in the Computer Science Curriculum.

    ERIC Educational Resources Information Center

    Sheel, Stephen J.; Collins, E. Eugene

    In the Fall of 1994, the Computer Science Department at Coastal Carolina University (Conway, South Carolina implemented a formal ethics component in the introductory computer science course required of all majors. Prior to the introduction of this ethics component into the curriculum, a survey of ethical attitudes was administered to all computer…

  1. Ethics in Science: The Unique Consequences of Chemistry

    PubMed Central

    Kovac, Jeffrey

    2015-01-01

    This article discusses the ethical issues unique to the science and practice of chemistry. These issues arise from chemistry’s position in the middle between the theoretical and the practical, a science concerned with molecules that are of the right size to directly affect human life. Many of the issues are raised by the central activity of chemistry––synthesis. Chemists make thousands of new substances each year. Many are beneficial, but others are threats. Since the development of the chemical industry in the nineteenth century, chemistry has contributed to the deterioration of the environment but has also helped to reduce pollution. Finally, we discuss the role of codes of ethics and whether the current codes of conduct for chemists are adequate for the challenges of today’s world. PMID:26155729

  2. Ethics in Science: The Unique Consequences of Chemistry.

    PubMed

    Kovac, Jeffrey

    2015-01-01

    This article discusses the ethical issues unique to the science and practice of chemistry. These issues arise from chemistry's position in the middle between the theoretical and the practical, a science concerned with molecules that are of the right size to directly affect human life. Many of the issues are raised by the central activity of chemistry--synthesis. Chemists make thousands of new substances each year. Many are beneficial, but others are threats. Since the development of the chemical industry in the nineteenth century, chemistry has contributed to the deterioration of the environment but has also helped to reduce pollution. Finally, we discuss the role of codes of ethics and whether the current codes of conduct for chemists are adequate for the challenges of today's world.

  3. Ethical, legal, and social issues of the Human Genome Project: what to do with what we know.

    PubMed

    Pellerin, C

    1994-01-01

    Since fiscal year 1991, the U.S. Human Genome Project has spent $170.6 million in federal funds to help isolate genes associated with Huntington's disease, amyotrophic lateral sclerosis, neurofibromatosis types 1 and 2, myotonic dystrophy, and fragile X syndrome and to localize genes that predispose people to breast cancer, colon cancer, hypertension, diabetes, and Alzheimer's disease. Now comes the hard part. Biology's 21st century megaproject starts to look relatively manageable compared to another challenge facing the enterprise: sorting out ethical, legal, and social issues associated with using this information. "The Human Genome Project," wrote Senior Editor Barbara Jasny in the October 1 Science editorial, stretches "the limits of the technology and the limits of our ability to ethically and rationally apply genetic information to our lives."

  4. Spheres of influence: Ethical, legal, and social issues of the Human Genome Project: What to do with what we know

    SciTech Connect

    Pellerin, C. )

    1994-01-01

    Since fiscal year 1991, the U.S. Human Genome Project has spent $170.6 million in federal funds to help isolate genes associated with Huntington's disease, amyotrophic lateral sclerosis, neurofibromatosis types 1 and 2, myotonic dystrophy, and fragile X syndrome and to localize genes that predispose people to breast cancer, colon cancer, hypertension, diabetes, and Alzheimer's disease. Now come the hard part. Biology's 21st century megaproject starts to look relatively manageable compared to another challenge facing the enterprise: sorting out ethical, legal, and social issues associated with using this information. [open quotes]The Human Genome Project,[close quotes] wrote Senior Editor Barbara Jasny in the October 1 Science editorial, stretches [open quotes]the limits of the technology and the limits of our ability to ethically and rationally apply genetic information to our lives.[close quotes

  5. Genomics in the land of regulatory science.

    PubMed

    Tong, Weida; Ostroff, Stephen; Blais, Burton; Silva, Primal; Dubuc, Martine; Healy, Marion; Slikker, William

    2015-06-01

    Genomics science has played a major role in the generation of new knowledge in the basic research arena, and currently question arises as to its potential to support regulatory processes. However, the integration of genomics in the regulatory decision-making process requires rigorous assessment and would benefit from consensus amongst international partners and research communities. To that end, the Global Coalition for Regulatory Science Research (GCRSR) hosted the fourth Global Summit on Regulatory Science (GSRS2014) to discuss the role of genomics in regulatory decision making, with a specific emphasis on applications in food safety and medical product development. Challenges and issues were discussed in the context of developing an international consensus for objective criteria in the analysis, interpretation and reporting of genomics data with an emphasis on transparency, traceability and "fitness for purpose" for the intended application. It was recognized that there is a need for a global path in the establishment of a regulatory bioinformatics framework for the development of transparent, reliable, reproducible and auditable processes in the management of food and medical product safety risks. It was also recognized that training is an important mechanism in achieving internationally consistent outcomes. GSRS2014 provided an effective venue for regulators andresearchers to meet, discuss common issues, and develop collaborations to address the challenges posed by the application of genomics to regulatory science, with the ultimate goal of wisely integrating novel technical innovations into regulatory decision-making.

  6. Climate Engineering: A Nexus of Ethics, Science and Governance

    NASA Astrophysics Data System (ADS)

    Ackerman, T. P.

    2015-12-01

    Climate engineering (or geoengineering) has emerged as a possible component of a strategy to mitigate global warming. This emergence has produced a novel intersection of atmospheric science, environmental ethics and global governance. The scientific questions of climate engineering, while difficult to answer in their own right, are compounded by ethical considerations regarding whether these questions should be addressed and governance questions of how research and deployment could be managed. In an effort to address this intersection of ideas and provide our students with a rich interdisciplinary experience, we (T. Ackerman and S. Gardiner, both senior professors at the University of Washington) taught a cross-listed course in the Atmospheric Sciences and Philosophy departments. The course attracted 12 students (mostly graduate students but with two upper level undergraduates), with roughly equal representation from environmental sciences, ethics, and public policy disciplines, as well as two post-docs. Our primary goal for the course was to develop a functioning research community to address the core issues at the intersection of science and ethics. In this presentation, we discuss the course structure, identify strategies that were successful (or less so), and describe outcomes. We consider this course to be primarily pedagogical in nature, but we also recognize that many of the students in the class, perhaps even a majority, are intending to pursue careers outside academia in areas of public policy, environmental consulting, etc., which added an extra dimension to our class. Here, we also discuss the possibility of developing and teaching such courses in an academic environment that is stressed financially and increasingly dependent on metrics related to class size and student credit hours.

  7. Ethics and the science of animal minds.

    PubMed

    Allen, Colin

    2006-01-01

    Ethicists have commonly appealed to science to bolster their arguments for elevating the moral status of nonhuman animals. I describe a framework within which I take many ethicists to be making such appeals. I focus on an apparent gap in this framework between those properties of animals that are part of the scientific consensus, and those to which ethicists typically appeal in their arguments. I will describe two different ways of diminishing the appearance of the gap, and argue that both of them present challenges to ethicists seeking a firm scientific basis for their claims about the moral status of animals. I argue that more clarity about the role of appeals to science by applied ethicists leads to questions about the effectiveness of such appeals, and that these questions might best be pursued empirically.

  8. New ethical challenges in science and technology

    SciTech Connect

    2001-08-31

    The published research features some of the nation's leading scientists and engineers, as well as science policy experts, and discusses a wide range of issues and topics. These include the economic and social pressure impacting biomedical research, the impossibility of predicting all the behaviors of increasingly complex, engineered systems, a look at the new federal guidelines for misconduct and new wrinkles on faculty conflicts of interest.

  9. Genome Science and Personalized Cancer Treatment

    SciTech Connect

    Gray, Joe

    2009-08-04

    Summer Lecture Series 2009: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

  10. Genome Science and Personalized Cancer Treatment

    SciTech Connect

    Gray, Joe

    2009-08-07

    August 4, 2009 Berkeley Lab lecture: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

  11. Genome Science and Personalized Cancer Treatment

    ScienceCinema

    Gray, Joe

    2016-07-12

    August 4, 2009 Berkeley Lab lecture: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

  12. Water buffalo genome science comes of age.

    PubMed

    Michelizzi, Vanessa N; Dodson, Michael V; Pan, Zengxiang; Amaral, M Elisabete J; Michal, Jennifer J; McLean, Derek J; Womack, James E; Jiang, Zhihua

    2010-06-17

    The water buffalo is vital to the lives of small farmers and to the economy of many countries worldwide. Not only are they draught animals, but they are also a source of meat, horns, skin and particularly the rich and precious milk that may be converted to creams, butter, yogurt and many cheeses. Genome analysis of water buffalo has advanced significantly in recent years. This review focuses on currently available genome resources in water buffalo in terms of cytogenetic characterization, whole genome mapping and next generation sequencing. No doubt, these resources indicate that genome science comes of age in the species and will provide knowledge and technologies to help optimize production potential, reproduction efficiency, product quality, nutritional value and resistance to diseases. As water buffalo and domestic cattle, both members of the Bovidae family, are closely related, the vast amount of cattle genetic/genomic resources might serve as shortcuts for the buffalo community to further advance genome science and biotechnologies in the species.

  13. Genomic research with the newly dead: a crossroads for ethics and policy.

    PubMed

    Walker, Rebecca L; Juengst, Eric T; Whipple, Warren; Davis, Arlene M

    2014-01-01

    Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor.

  14. The Perfect Storm—Genetic Engineering, Science, and Ethics

    NASA Astrophysics Data System (ADS)

    Rollin, Bernard E.

    2012-07-01

    Uncertainty about ethics has been a major factor in societal rejection of biotechnology. Six factors help create a societal "perfect storm" regarding ethics and biotechnology: Social demand for ethical discussion; societal scientific illiteracy; poor social understanding of ethics; a "Gresham's Law for Ethics;" Scientific Ideology; vested interests dominating ethical discussion. How this can be remedied is discussed.

  15. Scientific misconduct and science ethics: a case study based approach.

    PubMed

    Consoli, Luca

    2006-07-01

    The Schön misconduct case has been widely publicized in the media and has sparked intense discussions within and outside the scientific community about general issues of science ethics. This paper analyses the Report of the official Committee charged with the investigation in order to show that what at first seems to be a quite uncontroversial case, turns out to be an accumulation of many interesting and non-trivial questions (of both ethical and philosophical interest). In particular, the paper intends to show that daily scientific practices are structurally permeated by chronic problems; this has serious consequences for how practicing scientists assess their work in general, and scientific misconduct in particular. A philosophical approach is proposed that sees scientific method and scientific ethics as inextricably interwoven. Furthermore, the paper intends to show that the definition of co-authorship that the members of the Committee use, although perhaps clear in theory, proves highly problematic in practice and raises more questions that it answers. A final plea is made for a more self-reflecting attitude of scientists as far as the moral and methodological profile of science is concerned as a key element for improving not only their scientific achievements, but also their assessment of problematic cases.

  16. To know or not to know? Integrating ethical aspects of genomic healthcare in the education of health professionals.

    PubMed

    Eriksen, Kathrine Krageskov

    2015-01-01

    Novel possibilities for employing genetic testing as part of the diagnostic process for a wide variety of diseases and conditions are emerging almost every day. This development brings prospects of more efficient treatment and prevention of serious and often lethal conditions. However, it also raises ethical questions concerning the issue of knowing or not knowing about our genetic make-up. Thus, as techniques for genetic testing are increasingly employed, demands on health professionals are changing. Health professionals must be able to inform and guide patients, and therefore they need knowledge and competencies related to both the technical and the ethical dimensions of genetic testing. This paper explores the requirements of the general education of health professionals if this need for ethics is acknowledged. It is suggested that it is important to include both an individualised and a societal ethical perspective to the development of genomic healthcare and that a key concept in doing so is 'professional reflectivity'. Employing one concrete example of teaching, this concept of reflectivity is operationalised in the health educational setting at the bachelor's level with a special focus on biomedical laboratory science, and three key concepts are developed: Gap sensitive interaction, professional humility, and contextual awareness. Additionally, anchored ethical dialog is explored as an instructional design that may support the development of reflectivity among health professionals.

  17. Ethical Issues and the Life Sciences. Test Edition. AAAS Study Guides on Contemporary Problems.

    ERIC Educational Resources Information Center

    Kieffer, George H.

    This is one of several study guides on contemporary problems produced by the American Association for the Advancement of Science with support of the National Science Foundation. This study guide on Ethical Issues and the Life Sciences includes the following sections: (1) Introduction; (2) The Search for an Ethic; (3) Biomedical Issues including…

  18. Cloning controversies: an overview of the science, ethics and politics.

    PubMed

    Sharma, B R

    2005-01-01

    Man's quest for knowledge is boundless. It is because of this quest and his untiring efforts to acquire it, that we have made such tremendous breakthroughs in the fields of science and medicine. Vaccines for hitherto incurable diseases, genetic engineering, and the correction of congenital and hereditary diseases are a few of these. With the successful cloning of 'Dolly', 'Molly' and 'Polly' we are now standing at the threshold of another major breakthrough--human cloning. However, are we ethically, morally and politically mature enough to 'go all the way' in a purely scientific manner, for the benefit of the human kind? A review of the scientific, ethical and political events in this field may be pertinent in trying to answer this important question.

  19. Integrating ethical topics in a traditional computer science course

    SciTech Connect

    Winrich, L.B.

    1994-12-31

    It is never hard to find additional, often unconventional, topics which seem to beg inclusion in standard courses. A dynamic discipline like computer science usually provides a steady stream of new technical ideas to vie for time and attention with more traditional material. As difficult as it may be to keep standard CS courses up-to-date with technical innovations, it often seems even more difficult to include non-technical topics even when there is universal agreement on their importance, Inevitably the question of whether or not such inclusion will compromise the technical content of the course arises. This paper describes an attempt to include two such topics in a traditional course in data structures. The two topics are writing and ethics and, although the effort concentrates on the inclusion of ethical questions in a standard CS course, writing is the vehicle for accomplishing this goal. Furthermore, the inclusion writing in the CS curriculum is certainly recognized as a desirable outcome.

  20. Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

    PubMed

    Wolf, Susan M; Burke, Wylie; Koenig, Barbara A

    2015-01-01

    Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.

  1. Ethical and practical challenges surrounding genetic and genomic research in developing countries.

    PubMed

    Nyika, Aceme

    2009-11-01

    The nature of some potential benefits and risks associated with genetic research is different from the types of potential benefits and risks associated with other types of health research such as clinical trials and biomedical research involving humans. Whereas most potential risks associated with biomedical research or clinical trials are mainly biological in nature, potential risks associated with genetic research are mainly of socioeconomic nature. Although the peculiarity of some of the aspects of genetic research and the complexity of the science involved are acknowledged, the extent to which these characteristics hinder firstly disclosure of information to participants and their communities and secondly comprehension of the disclosed information is a practical challenge that tends to be exaggerated in some cases. In this article, a brief overview of the various types of genetic research will be given in order to set the scene for some ethical and practical issues surrounding the research in developing countries that will be discussed subsequently. Case studies that illustrate some of the ethical and practical issues flagged will be given, followed by suggestions on possible ways of tackling some of the challenges in developing country settings. Nevertheless, genetic and genomic research could go a long way in providing knowledge that could be useful in the development of drugs and vaccines for many diseases affecting the developing countries.

  2. The Human Genome Project in the United States: a perspective on the commercial, ethical, legislative and health care issues.

    PubMed

    Mackler, Bruce F; Barach, Micha

    1991-01-01

    The Human Genome Project represents a government supported effort to map and sequence the human genome. Governmental support for the Project should include increased emphasis on grants and contracts to industry. This is particularly true for small highly innovative biotechnology companies that can rapidly integrate and use technology as a base for product development. Private industry must be integrated as a partner into the Project, as it will be in Japan and Europe. There is a consensus in industry that the Genome Project is, at this stage at least, a science research project funded by government and not, at present, a commercial project. It is not seriously expected to have any substantial widespread commercial impact in the near future. The ultimate commercial benefits of the Human Genome Project, in terms of definable health care products, may not be realized until well into the next century. Yet, there are a few companies for which the Genome Project affords immediate commercial opportunities in certain niche areas. The Genome Project can be expected to have a significant impact upon medical knowledge and treatment. Though the Genome Project is just beginning, much of the type of medical knowledge expected to be gained from the Project is already present and even being exploited, albeit on a small scale. The application of genetic understanding to practical applications raises ethical, medical and legal issues central to the Genome Project. Unfortunately, emotion and sensationalism sometimes dominate and prevent a constructive discussion of ethical and social issues pertaining to genetics. To answer public concerns about human gene transfer experiments, the medical and biotechnology communities must constructively discuss the medical realities, the benefits to human health and the adequacy of the current governmental oversights. These presentations must be understandable by the lay public and must address their fears. Failure to assuage public fears and

  3. The translational potential of research on the ethical, legal, and social implications of genomics.

    PubMed

    Burke, Wylie; Appelbaum, Paul; Dame, Lauren; Marshall, Patricia; Press, Nancy; Pyeritz, Reed; Sharp, Richard; Juengst, Eric

    2015-01-01

    Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research who are concerned with facilitating policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law. PMID:24946153

  4. The Translational Potential of Research on the Ethical, Legal and Social Implications of Genomics

    PubMed Central

    Burke, Wylie; Appelbaum, Paul; Dame, Lauren; Marshall, Patricia; Press, Nancy; Pyeritz, Reed; Sharp, Richard; Juengst, Eric

    2014-01-01

    Federally funded research on the ethical, legal and social implications of genomics (“ELSI” research) includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics, how foundational research in bioethics, law, and the social sciences might inform those policies, and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in the light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research concerned to facilitate policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law. PMID:24946153

  5. The Perfect Storm--Genetic Engineering, Science, and Ethics

    ERIC Educational Resources Information Center

    Rollin, Bernard E.

    2014-01-01

    Uncertainty about ethics has been a major factor in societal rejection of biotechnology. Six factors help create a societal "perfect storm" regarding ethics and biotechnology: Social demand for ethical discussion; societal scientific illiteracy; poor social understanding of ethics; a "Gresham's Law for Ethics;" Scientific…

  6. Improving epistemological beliefs and moral judgment through an STS-based science ethics education program.

    PubMed

    Han, Hyemin; Jeong, Changwoo

    2014-03-01

    This study develops a Science-Technology-Society (STS)-based science ethics education program for high school students majoring in or planning to major in science and engineering. Our education program includes the fields of philosophy, history, sociology and ethics of science and technology, and other STS-related theories. We expected our STS-based science ethics education program to promote students' epistemological beliefs and moral judgment development. These psychological constructs are needed to properly solve complicated moral and social dilemmas in the fields of science and engineering. We applied this program to a group of Korean high school science students gifted in science and engineering. To measure the effects of this program, we used an essay-based qualitative measurement. The results indicate that there was significant development in both epistemological beliefs and moral judgment. In closing, we briefly discuss the need to develop epistemological beliefs and moral judgment using an STS-based science ethics education program.

  7. Ethical sensitivity intervention in science teacher education: Using computer simulations and professional codes of ethics

    NASA Astrophysics Data System (ADS)

    Holmes, Shawn Yvette

    A simulation was created to emulate two Racial Ethical Sensitivity Test (REST) videos (Brabeck et al., 2000). The REST is a reliable assessment for ethical sensitivity to racial and gender intolerant behaviors in educational settings. Quantitative and qualitative analysis of the REST was performed using the Quick-REST survey and an interview protocol. The purpose of this study was to affect science educator ability to recognize instances of racial and gender intolerant behaviors by levering immersive qualities of simulations. The fictitious Hazelton High School virtual environment was created by the researcher and compared with the traditional REST. The study investigated whether computer simulations can influence the ethical sensitivity of preservice and inservice science teachers to racial and gender intolerant behaviors in school settings. The post-test only research design involved 32 third-year science education students enrolled in science education classes at several southeastern universities and 31 science teachers from the same locale, some of which were part of an NSF project. Participant samples were assigned to the video control group or the simulation experimental group. This resulted in four comparison group; preservice video, preservice simulation, inservice video and inservice simulation. Participants experienced two REST scenarios in the appropriate format then responded to Quick-REST survey questions for both scenarios. Additionally, the simulation groups answered in-simulation and post-simulation questions. Nonparametric analysis of the Quick-REST ascertained differences between comparison groups. Cronbach's alpha was calculated for internal consistency. The REST interview protocol was used to analyze recognition of intolerant behaviors in the in-simulation prompts. Post-simulation prompts were analyzed for emergent themes concerning effect of the simulation on responses. The preservice video group had a significantly higher mean rank score than

  8. Ethical, legal and social issues in the context of the planning stages of the Southern African Human Genome Programme.

    PubMed

    de Vries, Jantina; Slabbert, Melodie; Pepper, Michael S

    2012-03-01

    As the focus on the origin of modern man appears to be moving from eastern to southern Africa, it is recognised that indigenous populations in southern Africa may be the most genetically diverse on the planet and hence a valuable resource for human genetic diversity studies. In order to build regional capacity for the generation, analysis and application of genomic data, the Southern African Human Genome Programme was recently launched with the aid of seed funding from the national Department of Science and Technology in South Africa. The purpose of the article is to investigate pertinent ethical, legal and social issues that have emerged during the planning stages of the Southern African Human Genome Programme. A careful consideration of key issues such as public perception of genomic research, issues relating to genetic and genomic discrimination and stigmatisation, informed consent, privacy and data protection, and the concept of genomic sovereignty, is of paramount importance in the early stages of the Programme. This article will also consider the present legal framework governing genomic research in South Africa and will conclude with proposals regarding such a framework for the future.

  9. Ethical, legal and social issues in the context of the planning stages of the Southern African Human Genome Programme.

    PubMed

    de Vries, Jantina; Slabbert, Melodie; Pepper, Michael S

    2012-03-01

    As the focus on the origin of modern man appears to be moving from eastern to southern Africa, it is recognised that indigenous populations in southern Africa may be the most genetically diverse on the planet and hence a valuable resource for human genetic diversity studies. In order to build regional capacity for the generation, analysis and application of genomic data, the Southern African Human Genome Programme was recently launched with the aid of seed funding from the national Department of Science and Technology in South Africa. The purpose of the article is to investigate pertinent ethical, legal and social issues that have emerged during the planning stages of the Southern African Human Genome Programme. A careful consideration of key issues such as public perception of genomic research, issues relating to genetic and genomic discrimination and stigmatisation, informed consent, privacy and data protection, and the concept of genomic sovereignty, is of paramount importance in the early stages of the Programme. This article will also consider the present legal framework governing genomic research in South Africa and will conclude with proposals regarding such a framework for the future. PMID:22908741

  10. Situation analysis of local ethical committees in medical sciences in Iran

    PubMed Central

    Fakour, Yousef; Eftekhari, Monir Baradaran; Haghighi, Zohre; Mehr, Najmeh Khosravan; Hejazi, Farzaneh

    2011-01-01

    BACKGROUND: Local ethical committees in medical sciences in Iran were established in 1999 in order to assess and evaluate the observance of ethical standards throughout the universities and research centers. The purpose of this study is to analyze the situation of local ethical committees in order to develop research ethics guideline. METHODS: For this cross-sectional study which has been conducted with the support of WHO, 40 local ethical committees in all universities of medical sciences were evaluated by use of determined questionnaires. RESULTS: In this study, 40 universities of medical sciences participated; all of them have established local ethical committees. Each committee has 5 to 11 members and in more than 80% cases, written guidelines for selecting the committee's members are available. The minimum number of members for official session is at least 3 and replacement of absent members, did not take place in more than 85% of the committees. Informed consent in 95% of these local ethical committees is available. In all committees, researches regarding the use of human subjects are under ethical consideration. In half of the local ethical committees, penalties for non-compliance with the regulations are considered. The average number of research project evaluated in last session of these committees was 15.2 and the committees in 50% of cases have provided ethics training specifically for their members. CONCLUSIONS: Policymakers should develop a standard guideline for local ethical committees in medical science universities in Iran. PMID:22091250

  11. Clinical and ethical considerations of massively parallel sequencing in transplantation science.

    PubMed

    Scherer, Andreas

    2013-12-24

    Massively parallel sequencing (MPS), alias next-generation sequencing, is making its way from research laboratories into applied sciences and clinics. MPS is a framework of experimental procedures which offer possibilities for genome research and genetics which could only be dreamed of until around 2005 when these technologies became available. Sequencing of a transcriptome, exome, even entire genomes is now possible within a time frame and precision that we could only hope for 10 years ago. Linking other experimental procedures with MPS enables researchers to study secondary DNA modifications across the entire genome, and protein binding sites, to name a few applications. How the advancements of sequencing technologies can contribute to transplantation science is subject of this discussion: immediate applications are in graft matching via human leukocyte antigen sequencing, as part of systems biology approaches which shed light on gene expression processes during immune response, as biomarkers of graft rejection, and to explore changes of microbiomes as a result of transplantation. Of considerable importance is the socio-ethical aspect of data ownership, privacy, informed consent, and result report to the study participant. While the technology is advancing rapidly, legislation is lagging behind due to the globalisation of data requisition, banking and sharing.

  12. Clinical and ethical considerations of massively parallel sequencing in transplantation science

    PubMed Central

    Scherer, Andreas

    2013-01-01

    Massively parallel sequencing (MPS), alias next-generation sequencing, is making its way from research laboratories into applied sciences and clinics. MPS is a framework of experimental procedures which offer possibilities for genome research and genetics which could only be dreamed of until around 2005 when these technologies became available. Sequencing of a transcriptome, exome, even entire genomes is now possible within a time frame and precision that we could only hope for 10 years ago. Linking other experimental procedures with MPS enables researchers to study secondary DNA modifications across the entire genome, and protein binding sites, to name a few applications. How the advancements of sequencing technologies can contribute to transplantation science is subject of this discussion: immediate applications are in graft matching via human leukocyte antigen sequencing, as part of systems biology approaches which shed light on gene expression processes during immune response, as biomarkers of graft rejection, and to explore changes of microbiomes as a result of transplantation. Of considerable importance is the socio-ethical aspect of data ownership, privacy, informed consent, and result report to the study participant. While the technology is advancing rapidly, legislation is lagging behind due to the globalisation of data requisition, banking and sharing. PMID:24392310

  13. Data sharing in stem cell translational science: policy statement by the International Stem Cell Forum Ethics Working Party.

    PubMed

    Bredenoord, Annelien L; Mostert, Menno; Isasi, Rosario; Knoppers, Bartha M

    2015-01-01

    Data and sample sharing constitute a scientific and ethical imperative but need to be conducted in a responsible manner in order to protect individual interests as well as maintain public trust. In 2014, the Global Alliance for Genomics and Health (GA4GH) adopted a common Framework for Responsible Sharing of Genomic and Health-Related Data. The GA4GH Framework is applicable to data sharing in the stem cell field, however, interpretation is required so as to provide guidance for this specific context. In this paper, the International Stem Cell Forum Ethics Working Party discusses those principles that are specific to translational stem cell science, including engagement, data quality and safety, privacy, security and confidentiality, risk-benefit analysis and sustainability.

  14. Human genome education model project. Ethical, legal, and social implications of the human genome project: Education of interdisciplinary professionals

    SciTech Connect

    Weiss, J.O.; Lapham, E.V.

    1996-12-31

    This meeting was held June 10, 1996 at Georgetown University. The purpose of this meeting was to provide a multidisciplinary forum for exchange of state-of-the-art information on the human genome education model. Topics of discussion include the following: psychosocial issues; ethical issues for professionals; legislative issues and update; and education issues.

  15. Using "Ethics Labs" to Set a Framework for Ethical Discussion in an Undergraduate Science Course

    ERIC Educational Resources Information Center

    Smith, Kelly; Wueste, Daniel; Frugoli, Julia

    2007-01-01

    Teaching ethics across the curriculum is a strategy adopted by many universities. One of the fundamental aims of teaching ethics across the curriculum is to get students to see ethics as truly relevant to the subjects they are studying. Ideally, students will come to see that ethics is a thread woven deeply in the fabric of all knowledge and…

  16. In search of the soul in science: medical ethics' appropriation of philosophy of science in the 1970s.

    PubMed

    Aronova, Elena

    2009-01-01

    This paper examines the deployment of science studies within the field of medical ethics. For a short time, the discourse of medical ethics became a fertile ground for a dialogue between philosophically minded bioethicists and the philosophers of science who responded to Thomas Kuhn's challenge. In their discussion of the validity of Kuhn's work, these bioethicists suggested a distinct interpretation of Kuhn, emphasizing the elements in his account that had been independently developed by Michael Polanyi, and propelling a view of science that retreated from idealizations of scientific method without sacrificing philosophical realism. Appropriating Polanyi, they extended his account of science to biology and medicine. The contribution of Karl Popper to the debate on the applicability of philosophy of science to the issues of medical ethics provides the opportunity to discuss the ways in which political agendas of different epistemologies of science intertwined with questions of concern to medical ethics.

  17. In search of the soul in science: medical ethics' appropriation of philosophy of science in the 1970s.

    PubMed

    Aronova, Elena

    2009-01-01

    This paper examines the deployment of science studies within the field of medical ethics. For a short time, the discourse of medical ethics became a fertile ground for a dialogue between philosophically minded bioethicists and the philosophers of science who responded to Thomas Kuhn's challenge. In their discussion of the validity of Kuhn's work, these bioethicists suggested a distinct interpretation of Kuhn, emphasizing the elements in his account that had been independently developed by Michael Polanyi, and propelling a view of science that retreated from idealizations of scientific method without sacrificing philosophical realism. Appropriating Polanyi, they extended his account of science to biology and medicine. The contribution of Karl Popper to the debate on the applicability of philosophy of science to the issues of medical ethics provides the opportunity to discuss the ways in which political agendas of different epistemologies of science intertwined with questions of concern to medical ethics. PMID:19835265

  18. Ethical and Legal Issues in Biobanking for Genomic Research in Nigeria.

    PubMed

    Akintola, Simisola O

    2012-01-01

    The pursuit of genomic research and biobanking has raised concerns and discussions about the ethical and legal implications. Given the specific challenges that surround such enterprise in low and middle income countries, it is pertinent to examine them in the light of the advent of Biobanking and Genomic research in Nigeria. In this paper I discuss the issues and suggest model solutions derived from advanced jurisdictions. These ethical and legal issues are discussed within the context of the legal system of a typical African country whose jurisprudence derives from that of its erstwhile colonial master, the United Kingdom. This includes issues relating to law and human rights, informed consent, native and customary law.

  19. Teaching heroics: Identity and ethical imagery in science education

    NASA Astrophysics Data System (ADS)

    Robeck, Edward C.

    themes of separation and boundary imagery, perpetuates relations of divisive bias. To forestall this, I suggest that science education can be approached in ways that incorporate what is referred to as an ethic of plenishment, which strives to promote expansive identities through a proliferation of interpersonal associations.

  20. On the compatibility of a conservation ethic with biological science.

    PubMed

    Sagoff, Mark

    2007-04-01

    If value entails or implies purpose, it follows that natural objects (e.g., endangered species) lack value and thus cannot be worth protecting except for a purpose they may serve-either the end for which God created the world (according to natural theology) or some use to which human beings may put them (according to a consequentialist or utilitarian ethic). If value requires purpose, the refutation of natural theology after Darwin implies that humanity has no obligation to respect or preserve the natural world except insofar as it is economically efficient to do so. Drawing on the distinction between explanation and communication found in Calvinist theology, I argue that value does not entail purpose. The expressive, aesthetic, or communicative aspects of nature may be valuable or endow natural objects with value apart from any use or purpose these objects may serve. The crucial distinction between explanation and communication-one scientific, the other aesthetic-offers a rationale for an obligation to protect the natural world that may appeal to members of faith communities and to biologists and other scientists. This approach also helps resolve the "lurking inconsistency" some scholars see in the relationship between a deterministic biological science and a conservationist ethic. PMID:17391184

  1. On the compatibility of a conservation ethic with biological science.

    PubMed

    Sagoff, Mark

    2007-04-01

    If value entails or implies purpose, it follows that natural objects (e.g., endangered species) lack value and thus cannot be worth protecting except for a purpose they may serve-either the end for which God created the world (according to natural theology) or some use to which human beings may put them (according to a consequentialist or utilitarian ethic). If value requires purpose, the refutation of natural theology after Darwin implies that humanity has no obligation to respect or preserve the natural world except insofar as it is economically efficient to do so. Drawing on the distinction between explanation and communication found in Calvinist theology, I argue that value does not entail purpose. The expressive, aesthetic, or communicative aspects of nature may be valuable or endow natural objects with value apart from any use or purpose these objects may serve. The crucial distinction between explanation and communication-one scientific, the other aesthetic-offers a rationale for an obligation to protect the natural world that may appeal to members of faith communities and to biologists and other scientists. This approach also helps resolve the "lurking inconsistency" some scholars see in the relationship between a deterministic biological science and a conservationist ethic.

  2. Alternative sources of pluripotency: science, ethics, and stem cells.

    PubMed

    Kastenberg, Zachary J; Odorico, Jon S

    2008-07-01

    Despite many advances in human embryonic stem cell (hESC) technology the ethical dilemma involving the destruction of a human embryo is one factor that has limited the development of hESC based clinical therapies. Two recent reports describing the production of pluripotent stem cells following the in vitro reprogramming of human somatic cells with certain defined factors illustrate one potential method of bypassing the ethical debate surrounding hESCs (Yu J, Vodyanik MA, Smuga-Otto K, et al. Induced pluripotent stem cell lines derived from human somatic cells. Science. 2007 Dec;318(5858):1917-1920; Takahashi K, Tanabe K, Ohnuki M, et al. Induction of pluripotent stem cells from adult human fibroblasts by defined factors. Cell. 2007 Nov;131(5): 861-872.). Other alternative methods include nuclear transfer, altered nuclear transfer, and parthenogenesis; each with its own set of advantages and disadvantages. This review discusses recent advances in these technologies with specific focus on the issues of embryo destruction, oocyte recovery, and the potential of each technology to produce large scale, patient specific cell transplantation therapies that would require little or no immunosuppression.

  3. The routinisation of genomics and genetics: implications for ethical practices.

    PubMed

    Foster, M W; Royal, C D M; Sharp, R R

    2006-11-01

    Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be re-examined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres.

  4. Curiosity, imagination, compassion, science and ethics: do curiosity and imagination serve a central function?

    PubMed

    Loewy, E H

    1998-12-01

    Curiosity and imagination have been neglected in epistemology. This paper argues that the role of curiosity and imagination is central to the way we think, regardless of whether it is thinking about problems of ethics or problems of science. In our ever more materialistic society, curiosity and reason are either discouraged or narrowly channeled. I shall argue that the role of curiosity and imagination for both science and ethics is so important that nurturing them can be seen as an ethical obligation and suppressing them as ethically problematic.

  5. Pragmatic and Ethical Challenges of Incorporating the Genome into the Electronic Medical Record

    PubMed Central

    Nishimura, Adam A.; Tarczy-Hornoch, Peter; Shirts, Brian H.

    2014-01-01

    Recent successes in the use of gene sequencing for patient care highlight the potential of genomic medicine. For genomics to become a part of usual care, pertinent elements of a patient's genomic test must be communicated to the most appropriate care providers. Electronic medical records may serve as a useful tool for storing and disseminating genomic data. Yet, the structure of existing EMRs and the nature of genomic data pose a number of pragmatic and ethical challenges in their integration. Through a review of the recent genome-EMR integration literature, we explore concrete examples of these challenges, categorized under four key questions: What data will we store? How will we store it? How will we use it? How will we protect it? We conclude that genome-EMR integration requires a rigorous, multi-faceted and interdisciplinary approach of study. Problems facing the field are numerous, but few are intractable. PMID:26146597

  6. The Tower Builders: A Consideration of STEM, STSE and Ethics in Science Education

    ERIC Educational Resources Information Center

    Steele, Astrid; Brew, Christine R.; Beatty, Brenda R.

    2012-01-01

    The call for the integration of ethical considerations in the teaching of science is now firmly on the agenda. Taking as illustrative a science lesson in a pre-service teacher class, the authors consider the roles of STSE (science, technology, society and environment) and the increasingly influential heavily funded STEM (science, technology,…

  7. Becoming a science teacher: moving toward creolized science and an ethic of cosmopolitanism

    NASA Astrophysics Data System (ADS)

    Seiler, Gale

    2011-03-01

    Although communities and schools in North America are increasingly diverse and positioned in a global web, schools continue to adhere to Western norms and the teacher workforce remains largely White, continuing an ideology of collective sameness and conformity. Hybridization of teacher identity and of science teaching are suggested as ways to advance an ethic of solidarity through difference (cosmopolitanism) with science teaching as its vehicle. In this paper, I explore identity hybridization among non-dominant science teachers as they merge identity narratives, or who they are around science and science teaching, with who they are out-of-school. Our attention is focused on their experiences of dis-identification with science in terms of diaspora, or the sense of being taken away from what one knows and values. By generating a creolized approach to science teaching, teachers create possibilities for greater student identification with science in school, which in turn has potential for changing the face of who does science and of science itself.

  8. Genomics and Ethics: The Case of Cloned and/or Transgenic Animals

    PubMed Central

    2003-01-01

    The point of the present study is to illustrate and, if possible, promote the existing link between genomics and ethics, taking the example of cloned and transgenic animals. These ‘new animals’ raise theoretical and practical problems that concern applied ethics. We will explore more particularly an original strategy showing that it is possible, starting from philosophical questioning about the nature of identity, to use a genomic approach, based on amplification fragment length polymorphism (AFLP) and methylation-sensitive amplification polymorphism (MSAP) detection, to provide useful tools to define more rigorously what cloned animals are, by testing their genetic and epigenetic identity. We expect from the future results of this combined approach to stimulate the creativity of the philosophical and ethical reflection about the impact of biotechnology on animals, and to increase scientific involvement in such issues. PMID:18629111

  9. Population genomics and research ethics with socially identifable groups.

    PubMed

    McGregor, Joan L

    2007-01-01

    In this paper, the author questions whether the research ethics guidelines and procedures are robust enough to protect groups when conducting genetics research with socially identifiable populations, particularly with Native American groups. The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups.

  10. [Social perceptions on genomics in four Latin American countries. Ethical-legal implications].

    PubMed

    Rodríguez Yunta, Eduardo; Valdebenito Herrera, Carolina; Misseroni, Adelio; Fernández Milla, Lautaro; Outomuro, Delia; Schiattino Lemus, Irene; Lolas Stepke, Fernando

    2004-01-01

    The authors analyze under an ethical and legal perspective the consequences and anxieties generated by the human genome project in the population of four Latin American countries: Argentine, Chile, México and Perú, through bibliographical analysis and interviews done to biomedical researches, lawyers and legislators, students and lay civilians.

  11. An Evaluation of Research Ethics in Undergraduate Health Science Research Methodology Programs at a South African University.

    PubMed

    Coetzee, Tanya; Hoffmann, Willem A; de Roubaix, Malcolm

    2015-10-01

    The amended research ethics policy at a South African University required the ethics review of undergraduate research projects, prompting the need to explore the content and teaching approach of research ethics education in health science undergraduate programs. Two qualitative data collection strategies were used: document analysis (syllabi and study guides) and semi-structured interviews with research methodology coordinators. Five main themes emerged: (a) timing of research ethics courses, (b) research ethics course content, (c) sub-optimal use of creative classroom activities to facilitate research ethics lectures, (d) understanding the need for undergraduate project research ethics review, and (e) research ethics capacity training for research methodology lecturers and undergraduate project supervisors.

  12. Ethical, legal, and social implications of incorporating genomic information into electronic health records

    PubMed Central

    Hazin, Ribhi; Brothers, Kyle B.; Malin, Bradley A.; Koenig, Barbara A.; Sanderson, Saskia C.; Rothstein, Mark A.; Williams, Marc S.; Clayton, Ellen W.; Kullo, Iftikhar J.

    2014-01-01

    The inclusion of genomic data in the electronic health record raises important ethical, legal, and social issues. In this article, we highlight these challenges and discuss potential solutions. We provide a brief background on the current state of electronic health records in the context of genomic medicine, discuss the importance of equitable access to genome-enabled electronic health records, and consider the potential use of electronic health records for improving genomic literacy in patients and providers. We highlight the importance of privacy, access, and security, and of determining which genomic information is included in the electronic health record. Finally, we discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data, and nondocumentation and duty to warn family members at potential genetic risk. PMID:24030434

  13. Ethical, legal, and social implications of incorporating genomic information into electronic health records.

    PubMed

    Hazin, Ribhi; Brothers, Kyle B; Malin, Bradley A; Koenig, Barbara A; Sanderson, Saskia C; Rothstein, Mark A; Williams, Marc S; Clayton, Ellen W; Kullo, Iftikhar J

    2013-10-01

    The inclusion of genomic data in the electronic health record raises important ethical, legal, and social issues. In this article, we highlight these challenges and discuss potential solutions. We provide a brief background on the current state of electronic health records in the context of genomic medicine, discuss the importance of equitable access to genome-enabled electronic health records, and consider the potential use of electronic health records for improving genomic literacy in patients and providers. We highlight the importance of privacy, access, and security, and of determining which genomic information is included in the electronic health record. Finally, we discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data, and nondocumentation and duty to warn family members at potential genetic risk.

  14. ELSI Bibliography: Ethical, legal and social implications of the Human Genome Project. 1994 Supplement

    SciTech Connect

    Yesley, M.S.; Ossorio, P.N.

    1994-09-01

    This report updates and expands the second edition of the ELSI Bibliography, published in 1993. The Bibliography and Supplement provides a comprehensive resource for identifying publications on the major topics related to the ethical, legal and social issues (ELSI) of the Human Genome Project. The Bibliography and Supplement are extracted from a database compiled at Los Alamos National Laboratory with the support of the Office of Energy Research, US Department of Energy. The second edition of the ELSI Bibliography was dated May 1993 but included publications added to the database until fall 1993. This Supplement reflects approximately 1,000 entries added to the database during the past year, bringing the total to approximately 7,000 entries. More than half of the new entries were published in the last year, and the remainder are earlier publications not previously included in the database. Most of the new entries were published in the academic and professional literature. The remainder are press reports from newspapers of record and scientific journals. The topical listing of the second edition has been followed in the Supplement, with a few changes. The topics of Cystic Fibrosis, Huntington`s Disease, and Sickle Cell Anemia have been combined in a single topic, Disorders. Also, all the entries published in the past year are included in a new topic, Publications: September 1993--September 1994, which provides a comprehensive view of recent reporting and commentary on the science and ELSI of genetics.

  15. Ethical Practices in Journal Publishing: A Study of Library and Information Science Periodicals.

    ERIC Educational Resources Information Center

    Serebnick, Judith; Harter, Stephen P.

    1990-01-01

    Describes a study that examined generally accepted ethical norms in library and information science journals regarding practices such as the multiple publication of the same article, plagiarism, and cronyism. The responses of editors to action scenarios focused on ethical behavior are discussed and conclusions are drawn about the ethical…

  16. Toward an Essential Ethic for Teaching Science in the New Millennium.

    ERIC Educational Resources Information Center

    Hays, Irene de la Bretonne

    The purpose of this study was to identify and explore values and views that might underlie an essential ethic for teaching science in the new millennium. With such an ethic, teachers may be better able to prepare young people to form and fully participate in communities that restore and sustain Earth. Reviewed in the literature for this study were…

  17. Bioethics methods in the ethical, legal, and social implications of the human genome project literature.

    PubMed

    Walker, Rebecca L; Morrissey, Clair

    2014-11-01

    While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations).

  18. BIOETHICS METHODS IN THE ETHICAL, LEGAL, AND SOCIAL IMPLICATIONS OF THE HUMAN GENOME PROJECT LITERATURE

    PubMed Central

    Walker, Rebecca; Morrissey, Clair

    2013-01-01

    While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003-2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations). PMID:23796275

  19. The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research Institute.

    PubMed

    Meslin, Eric M; Thomson, Elizabeth J; Boyer, Joy T

    1997-09-01

    Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and the public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program's current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.

  20. Overlooked aspects in the education of science professionals: Mentoring, ethics, and professional responsibility

    NASA Astrophysics Data System (ADS)

    Bird, Stephanie J.

    1994-03-01

    Science as profession is generally defined narrowly as research. Science education as preparation for a profession in research is usually perceived as course work and laboratory training, even though the necessary knowledge and skills to pursue a research career are more extensive and diverse and are learned in one-on-one interaction with mentors. A complete education of science professionals includes the values, ethical standards and conventions of the discipline since they are fundamental to the profession. Mentoring and education in the responsible conduct and reporting of research and in the ethical dimensions of science are among the professional responsibilities of scientists and need to be discussed as part of science education. Moreover, science as an enterprise is much more than research and includes a number of other components, including science teaching, science journalism, and science policy. Each of these contributes to the nature of science and its role in society.

  1. Holistic science: An understanding of science education encompassing ethical and social issues

    NASA Astrophysics Data System (ADS)

    Malekpour, Susan

    Science has often been viewed, by the majority of our educators and the general public, as being objective and emotionless. Based on this view, our educators teach science in the same manner, objectively and in an abstract form. This manner of teaching has hindered our learners' ability for active learning and distanced them from the subject matter. In this action research, I have examined holistic science pedagogy in conjunction with a constructivism theory. In holistic science pedagogy, scientific knowledge is combined with subjective personal experiences and social issues. There is an interaction between student and scientific data when the student's context, relationships, and lived experiences that play a role in the scientific recognition of the world were incorporated into the learning process. In this pedagogical model, the factual content was viewed from the context of social and ethical implications. By empowering learners with this ability, science knowledge will no longer be exclusive to a select group. This process empowers the general population with the ability to understand scientific knowledge and therefore the ability to make informed decisions based on this knowledge. The goal was to make curriculum developers more conscious of factors that can positively influence the learning process and increase student engagement and understanding within the science classroom. The holistic approach to science pedagogy has enlightened and empowered our adult learners more effectively. Learners became more actively engaged in their own process of learning. Teachers must be willing to listen and implement student suggestions on improving the teaching/learning process. Teachers should be willing to make the effort in connecting with their students by structuring courses so the topics would be relevant to the students in relation to real world and social/ethical and political issues. Holistic science pedagogy strives for social change through the empowerment of

  2. Moving life science ethics debates beyond national borders: some empirical observations.

    PubMed

    Bezuidenhout, Louise

    2014-06-01

    The life sciences are increasingly being called on to produce "socially robust" knowledge that honors the social contract between science and society. This has resulted in the emergence of a number of "broad social issues" that reflect the ethical tensions in these social contracts. These issues are framed in a variety of ways around the world, evidenced by differences in regulations addressing them. It is important to question whether these variations are simply regulatory variations or in fact reflect a contextual approach to ethics that brings into question the existence of a system of "global scientific ethics". Nonetheless, within ethics education for scientists these broad social issues are often presented using this scheme of global ethics due to legacies of science ethics pedagogy. This paper suggests this may present barriers to fostering international discourse between communities of scientists, and may cause difficulties in harmonizing (and transporting) national regulations for the governance of these issues. Reinterpreting these variations according to how the content of ethical principles is attributed by communities is proposed as crucial for developing a robust international discourse. To illustrate this, the paper offers some empirical fieldwork data that considers how the concept of dual-use (as a broad social issue) was discussed within African and UK laboratories. Demonstrating that African scientists reshaped the concept of dual-use according to their own research environmental pressures and ascribed alternative content to the principles that underpin it, suggests that the limitations of a "global scientific ethics" system for these issues cannot be ignored.

  3. The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence.

    PubMed

    Zwart, Hub

    2010-09-01

    The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to "individualise" the Prize? The "HGP Nobel Prize problem" is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly.

  4. The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence.

    PubMed

    Zwart, Hub

    2010-09-01

    The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to "individualise" the Prize? The "HGP Nobel Prize problem" is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly. PMID:20730106

  5. Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa

    PubMed Central

    2014-01-01

    Background The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN Consortium, one of the first international collaborative genomics research projects in Africa. Methods We conducted a study in three MalariaGEN project sites in Kenya, the Gambia, and the United Kingdom. The study entailed analysis of project documents and 49 semi-structured interviews with fieldworkers, researchers and ethics committee members. Results Concerns about how best to address the potential for harm to ethnic groups in MalariaGEN crystallised in discussions about the development of a data sharing policy. Particularly concerning for researchers was how best to manage the sharing of genomic data outside of the original collaboration. Within MalariaGEN, genomic data is accompanied by information about the locations of sample collection, the limitations of consent and ethics approval, and the values and relations that accompanied sample collection. For interviewees, this information and context were of important ethical value in safeguarding against harmful uses of data, but is not customarily shared with secondary data users. This challenged the ability of primary researchers to protect against harmful uses of ‘their’ data. Conclusion We identified three protective mechanisms – trust, the existence of a shared morality, and detailed contextual understanding – which together might play an important role in preventing the use of genomic data in ways that could harm the ethnic groups included in

  6. Animals, science, and ethics -- Section I. Ethical theory and the moral status of animals.

    PubMed

    Russow, Lilly-Marlene

    1990-01-01

    Section I discusses the moral status of animals as conceived from several theoretical and ethical perspectives. Though any one perspective might not be finally adequate, the juxtaposition of several ethical positions widens and deepens our understanding of the moral status of animals and of the responsibilities this complex status engenders.

  7. Animal minds and neuroimaging--bridging the gap between science and ethics?

    PubMed

    Buller, Tom

    2014-04-01

    As Colin Allen has argued, discussions between science and ethics about the mentality and moral status of nonhuman animals often stall on account of the fact that the properties that ethics presents as evidence of animal mentality and moral status, namely consciousness and sentience, are not observable "scientifically respectable" properties. In order to further discussion between science and ethics, it seems, therefore, that we need to identify properties that would satisfy both domains. In this article I examine the mentality and moral status of nonhuman animals from the perspective of neuroethics. By adopting this perspective, we can see how advances in neuroimaging regarding (1) research into the neurobiology of pain, (2) "brain reading," and (3) the minimally conscious state may enable us to identify properties that help bridge the gap between science and ethics, and hence help further the debate about the mentality and moral status of nonhuman animals. PMID:24495745

  8. Ethics and Expectations in Cross-Cultural Social Science Research.

    ERIC Educational Resources Information Center

    Hamnett, Michael P.

    Designed to answer some of the questions concerning the nature of professional ethics in the fields of anthropology, psychology, and sociology, this report outlines the range of ethical concerns of these three disciplines and describes the way in which these concerns have been previously presented. The first of the three sections of the report…

  9. Integrating "Ethics in Science" into a Summer Undergraduate Research Program.

    ERIC Educational Resources Information Center

    Shachter, Amy M.

    2003-01-01

    Presents a Public Health Service (PHS) program as a model for implementing the Responsible Conduct of Research (RCR) instructional program. Describes an ethical decision making framework designed to guide a discussion of issues surrounding the responsible conduct of research and facilitates the consideration of ethical choices in the context of…

  10. Neurogenethics: An emerging discipline at the intersection of ethics, neuroscience, and genomics

    PubMed Central

    Canli, Turhan

    2015-01-01

    The analysis of ethical, legal, and social implications (ELSI) associated with genetics (“genethics”) has focused on traditional concerns in bioethics, such as privacy and informed consent. The analysis of ELSI associated with neuroscience (“neuroethics”) has focused on concerns related to personhood, such as free will or cognitive enhancement. With neurogenomics coming of age, this is an appropriate time to attend to the set of novel concerns that arises when we consider the confluence of these two lines of research. I call this area of ethics inquiry “neurogenethics”, map out the problem space, and highlight future areas of inquiry related to genome editing and gene therapy, optogenetics and memory manipulation, and genomic identity and online communities. PMID:26937354

  11. Animals, science, and ethics -- Section IV. Ethical review and the animal care and use committee.

    PubMed

    Rowan, Andrew N

    1990-01-01

    Section IV takes a close practical look at Animal Care and Use Committees, their history, mandates, and the impediments they still experience in trying to promote animal welfare and an ethical scientific use of animals.

  12. Psychotherapy is an ethical endeavor: Balancing science and humanism in clinical practice.

    PubMed

    Allen, Jon G

    2013-01-01

    The author proposes that psychotherapy is best grounded in scienceinformed humanism and, more specifically, that psychotherapists at least implicitly promote ethical, moral--and indeed, virtuous--behavior. In doing so, therapists are challenged continually to engage in making evaluative moral judgments without being judgmental. He contends that psychotherapists, and psychologists especially, are overly reliant on science and might benefit from being more explicit in their ethical endeavors by being better informed about the illuminating philosophical literature on ethics. He highlights the concept of mentalizing, that is, attentiveness to mental states in self and others, such as needs, feelings, and thoughts. He proposes that mentalizing in the context of attachment relationships is common to all psychotherapies, and that this common process is best understood conjointly from the perspectives of developmental psychology and ethics. The author defends the thesis that employing psychotherapy to promote ethical, moral, and virtuous functioning can be justified on scientific grounds insofar as this functioning is conducive to health.

  13. The Use of Ethical Frameworks for Implementing Science as a Human Endeavour in Year 10 Biology

    ERIC Educational Resources Information Center

    Yap, Siew Fong; Dawson, Vaille

    2014-01-01

    This research focuses on the use of ethical frameworks as a pedagogical model for socio-scientific education in implementing the "Science as a Human Endeavour" (SHE) strand of the Australian Curriculum: Science in a Year 10 biology class in a Christian college in metropolitan Perth, Western Australia. Using a case study approach, a mixed…

  14. Increasing Interest, Confidence and Understanding of Ethical Issues in Science through Case-Based Instructional Technology.

    ERIC Educational Resources Information Center

    Lundeberg, Mary A.; Bergland, Mark; Klyczek, Karen; Mogen, Kim; Johnson, Doug; Harmes, Nina

    Software designed to promote the use of open-ended investigations in science education was evaluated in a study of whether using case-based simulation enhances students' understanding of ethical issues and data interpretation in science. The software was a DNA gel electrophoresis simulation that enabled students to conduct simulated genetic tests.…

  15. Profile: Institute of Society, Ethics and the Life Sciences

    ERIC Educational Resources Information Center

    Callahan, Daniel

    1971-01-01

    Describes an institute founded to examine moral, ethical, and legal issues raised by possibilities of euthanasia, genetic engineering, behavior control, population control, and improved disease control. Indicates scope of present research. (Editor/AL)

  16. The ethical implications of health sciences library economics.

    PubMed Central

    Byrd, G D

    1991-01-01

    The intersection of ethics and economics is rarely discussed in the library literature or at conferences. This may be due, in part, to what economists describe as a romantic value system, that is, the belief that resources are or should be unlimited and available for exploitation by every individual with a need. But recent changes in the national economy for libraries are forcing a realization that individualistic codes of ethics and value systems do not always result in socially desirable consequences. The problems of information management and access cannot be solved by ethical individuals acting alone. Instead, a new consensus is needed on collective ethical behaviors to ensure that health information resources are managed for the common good. PMID:1958911

  17. Quality of publication ethics in the instructions to the authors of Iranian journals of medical sciences.

    PubMed

    Salamat, Fatemeh; Sobhani, Abdol-Rasoul; Mallaei, Mahin

    2013-03-01

    Providing a perfect instruction to authors can prevent most potential publication ethics errors. This study was conducted to determine the quality of ethical considerations in the instructions to the authors of Iranian research scientific journals of medical sciences (accredited by the Commission for Accreditation and Improvement of Iranian Medical Journals) in October 2011. Checklist items (n=15) were extracted from the national manual of ethics in medical research publications, and the validity of the manual of ethics was assessed. All the accredited Iranian journals of medical sciences (n=198) were entered into the study. The instructions to the authors of 160 accredited Iranian journals were available online and were reviewed. The ANOVA and Kendall Correlation coefficient were performed to analyze the results. A total of 76 (47.5%) of the 160 journals were in English and 84 (52.5%) were in Farsi. The most frequently mentioned items related to publication ethics comprised "commitment not to send manuscripts to other journals and re-publish manuscripts" (85%, 83.8%), "aim and scope" of the journal (81.9%), "principles of medical ethics in the use of human samples" (74.4%), and "review process" (74.4%). On the other hand, the items of "principles of advertising" (1.2%), "authorship criteria" (15%), and "integrity in publication of clinical trial results" (30.6%) were the least frequently mentioned ones. Based on the study findings, the quality of publication ethics, as instructed to the authors, can improve the quality of the journals.

  18. Integrating ethics and science in the International HapMap Project

    PubMed Central

    2008-01-01

    Genomics resources that use samples from identified populations raise scientific, social and ethical issues that are, in many ways, inextricably linked. Scientific decisions about which populations to sample to produce the HapMap, an international genetic variation resource, have raised questions about the relationships between the social identities used to recruit participants and the biological findings of studies that will use the HapMap. The sometimes problematic implications of those complex relationships have led to questions about how to conduct genetic variation research that uses identified populations in an ethical way, including how to involve members of a population in evaluating the risks and benefits posed for everyone who shares that identity. The ways in which these issues are linked is increasingly drawing the scientific and ethical spheres of genomics research closer together. PMID:15153999

  19. Social and Ethical Implications of Genomics, Race, Ethnicity and Health Inequities

    PubMed Central

    Knerr, Sarah

    2010-01-01

    Objectives To review ethical, ethnic/ancestral, and societal issues of genetic and genomic information and technologies in the context of racial and ethnic health disparities. Data sources Research and journal articles, government reports, web sites. Conclusion As knowledge of human genetic variation and its link to diseases continues to grow, some see race and ethnicity well poised to serve as genetic surrogates in predicting disease etiology and treatment response. However, stereotyping and bias, in clinical interactions can be barriers to effective treatment for racial and ethnic minority patients. Implications for nursing practice The nursing profession has a key role in assuring that genomic healthcare does not enhance racial and ethnic health inequities. This will require utilization of new genomic knowledge and caring for each patient as an individual in a culturally and clinically appropriate manner. PMID:19000599

  20. Ethical implications of the use of whole genome methods in medical research.

    PubMed

    Kaye, Jane; Boddington, Paula; de Vries, Jantina; Hawkins, Naomi; Melham, Karen

    2010-04-01

    The use of genome-wide association studies (GWAS) in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created.

  1. Poplar Genomics: State of the Science

    SciTech Connect

    Yang, Xiaohan; Kalluri, Udaya C; DiFazio, Stephen P; Wullschleger, Stan D; Tschaplinski, Timothy J; Tuskan, Gerald A

    2009-01-01

    Populus has become a model for genomics research in woody perennial plants due to the release of its genome sequence and the important roles it has been playing in research areas related to alternative energy and climate change. Over the past five years, enormous advances have been made in both experimental and computational genomics in Populus. In the area of Populus experimental genomics, traditional genetic approaches have been advanced to the genome scale with resolution to the gene and/or single nucleotide level on the one hand, and on the other hand, the modern omics approaches have been successfully applied to analyses of gene functions, including transcriptome profiling using microarrays as well as the next-generation DNA sequencing technology, proteome analysis using matrix assisted laser desorption ionization timeof-flight mass spectrometry, and metabolome characterization using gas chromatography/timeof-flight mass spectrometry. In the area of Populus computational genomics, significant progress has been made in sequence-based discovery of predicted gene function, comparative analysis of gene families, development of online genomic databases, and studies of the evolutionary dynamics at both the gene and genome level. While exciting achievements have been obtained in Populus genomics, several challenges need to be addressed in the future: 1) better annotation of the Populus genome; 2) robust technology for large-scale gene expression analysis; 3) an efficient system for genome-wide mutagenesis; and 4) high performance computational pipelines to keep up with the pace of the rapid accumulation of data and to integrate omics data into functional systems biology platforms.

  2. Deliberative ethics in a biomedical institution: an example of integration between science and ethics.

    PubMed

    Boniolo, G; Di Fiore, P P

    2010-07-01

    The deliberative ethics guidelines elaborated and implemented by members of the IFOM-IEO Campus (Firc Institute of Molecular Oncology (IFOM) and the European Institute of Oncology (IEO)). These should serve the dual purpose of establishing a minimal set of standard rules for bioethical debate and any ensuing decision-making process, especially for the perspective of providing real instruments to foster public engagement and public awareness on the ethical issues involved in biomedical research. It is shown that these guidelines instantiate the scheme of one of the correct ways of debating formalised by the western thought. PMID:20605995

  3. Bridging autism, science and society: moving toward an ethically informed approach to autism research.

    PubMed

    Pellicano, Elizabeth; Stears, Marc

    2011-08-01

    Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes.

  4. ELSI Bibliography: Ethical legal and social implications of the Human Genome Project

    SciTech Connect

    Yesley, M.S.

    1993-11-01

    This second edition of the ELSI Bibliography provides a current and comprehensive resource for identifying publications on the major topics related to the ethical, legal and social issues (ELSI) of the Human Genome Project. Since the first edition of the ELSI Bibliography was printed last year, new publications and earlier ones identified by additional searching have doubled our computer database of ELSI publications to over 5600 entries. The second edition of the ELSI Bibliography reflects this growth of the underlying computer database. Researchers should note that an extensive collection of publications in the database is available for public use at the General Law Library of Los Alamos National Laboratory (LANL).

  5. Adverse events and placebo effects: African scientists, HIV, and ethics in the 'global health sciences'.

    PubMed

    Crane, Johanna

    2010-12-01

    This paper builds on the growing literature in 'postcolonial technoscience' by examining how science and ethics travel in transnational HIV research. I use examples of two controversial US-funded studies of mother-to-child transmission in Africa as case studies through which to explore quandaries of difference and inequality in global health research. My aim is not to adjudicate the debates over these studies, but rather to raise some questions about transnational research, science, and ethics that often get lost in public controversies over the moral status of such trials. Using interviews conducted with American and Ugandan HIV researchers as well as relevant material published in the popular and medical press, I argue that debates over research practice and the conditions under which practices are deemed ethically legitimate or questionable reflect the challenges faced by African researchers seeking to participate in global health science. In doing so, I show how questions of scientific legitimacy and authority are played out in debates over who decides what constitutes 'the normal' in human biological research and who can legitimately 'speak for Africa' regarding the ethics of research design and practice. I conclude that researchers from'resource-poor settings' must often walk a tightrope between claims of difference from the global North and assertions of sameness, in which a claim too forceful in either direction can undermine the ethical--and thus scientific--legitimacy of their research.

  6. The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence

    PubMed Central

    2010-01-01

    The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to “individualise” the Prize? The “HGP Nobel Prize problem” is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly. PMID:20730106

  7. Application of a Sensemaking Approach to Ethics Training in the Physical Sciences and Engineering

    NASA Astrophysics Data System (ADS)

    Kligyte, Vykinta; Marcy, Richard T.; Waples, Ethan P.; Sevier, Sydney T.; Godfrey, Elaine S.; Mumford, Michael D.; Hougen, Dean F.

    2008-06-01

    Integrity is a critical determinant of the effectiveness of research organizations in terms of producing high quality research and educating the new generation of scientists. A number of responsible conduct of research (RCR) training programs have been developed to address this growing organizational concern. However, in spite of a significant body of research in ethics training, it is still unknown which approach has the highest potential to enhance researchers' integrity. One of the approaches showing some promise in improving researchers' integrity has focused on the development of ethical decision-making skills. The current effort proposes a novel curriculum that focuses on broad metacognitive reasoning strategies researchers use when making sense of day-to-day social and professional practices that have ethical implications for the physical sciences and engineering. This sensemaking training has been implemented in a professional sample of scientists conducting research in electrical engineering, atmospheric and computer sciences at a large multi-cultural, multi-disciplinary, and multi-university research center. A pre-post design was used to assess training effectiveness using scenario-based ethical decision-making measures. The training resulted in enhanced ethical decision-making of researchers in relation to four ethical conduct areas, namely data management, study conduct, professional practices, and business practices. In addition, sensemaking training led to researchers' preference for decisions involving the application of the broad metacognitive reasoning strategies. Individual trainee and training characteristics were used to explain the study findings. Broad implications of the findings for ethics training development, implementation, and evaluation in the sciences are discussed.

  8. Application of a sensemaking approach to ethics training in the physical sciences and engineering.

    PubMed

    Kligyte, Vykinta; Marcy, Richard T; Waples, Ethan P; Sevier, Sydney T; Godfrey, Elaine S; Mumford, Michael D; Hougen, Dean F

    2008-06-01

    Integrity is a critical determinant of the effectiveness of research organizations in terms of producing high quality research and educating the new generation of scientists. A number of responsible conduct of research (RCR) training programs have been developed to address this growing organizational concern. However, in spite of a significant body of research in ethics training, it is still unknown which approach has the highest potential to enhance researchers' integrity. One of the approaches showing some promise in improving researchers' integrity has focused on the development of ethical decision-making skills. The current effort proposes a novel curriculum that focuses on broad metacognitive reasoning strategies researchers use when making sense of day-to-day social and professional practices that have ethical implications for the physical sciences and engineering. This sensemaking training has been implemented in a professional sample of scientists conducting research in electrical engineering, atmospheric and computer sciences at a large multi-cultural, multi-disciplinary, and multi-university research center. A pre-post design was used to assess training effectiveness using scenario-based ethical decision-making measures. The training resulted in enhanced ethical decision-making of researchers in relation to four ethical conduct areas, namely data management, study conduct, professional practices, and business practices. In addition, sensemaking training led to researchers' preference for decisions involving the application of the broad metacognitive reasoning strategies. Individual trainee and training characteristics were used to explain the study findings. Broad implications of the findings for ethics training development, implementation, and evaluation in the sciences are discussed.

  9. Science and Ethics: Bridge to the Future for Regenerative Medicine

    PubMed Central

    Patricio, Ventura-Juncá

    2011-01-01

    The objective of this article is to reflect on the relationship between regenerative medicine and ethics, using as references the Aristotelian concept of what is ethical and that of Raessler Van Potter about bioethics. To do this, I will briefly describe the advances in regenerative medicine with stem cells, the strategies for producing pluripotential cells without destroying human embryos, and the great potential of stem cells to improve life for Humanity, noting that for this to be possible, it is necessary to locate the role of regenerative medicine in the context of human values and well being. In this way, this article has a real perspective of the role that regenerative medicine can play in benefitting human beings and engendering respect for human and natural environments. PMID:24298338

  10. Bibliography: Ethical legal and social implications of the Human Genome Project

    SciTech Connect

    Yesley, M.S.

    1992-05-01

    The present document is a bibliography of more than 2600 publications, assembled and organized by Michael S. Yesley of the Los Alamos National Laboratory, focused on the ethical, legal, and social aspects, issues and implications of the Human Genome Project. It is meant to serve as a resource for scientists, educators, ethicists, philosophers, journalists, lawyers, and everyone else with an interest in the implications of the Genome Project. It is planned that at periodic intervals, as new publications and resources appear, this bibliography will be updated. In addition, there are plans to provide on-line access in the near future. Identification of the relevant literature will greatly facilitate future research and educational activities in this important field of inquiry, and we are pleased to make this ELSI bibliography and library resource available as a public service.

  11. Medical ethics and medical practice: a social science view.

    PubMed

    Stacey, M

    1985-03-01

    This paper argues that two characteristics of social life impinge importantly upon medical attempts to maintain high ethical standards. The first is the tension between the role of ethics in protecting the patient and maintaining the solidarity of the profession. The second derives from the observation that the foundations of contemporary medical ethics were laid at a time of one-to-one doctor-patient relations while nowadays most doctors work in or are associated with large-scale organisations. Records cease to be the property of individual doctors, become available not only to other doctors but also to educational and social work personnel. Making records openly available to patients is suggested as the only antidote to this irreversible loss of individual practitioner control. The importance for doctors of understanding the nature of professional and bureaucratic organisations in order to deal with the hazards involved is stressed as is the responsibility of the General Medical Council to regulate medical competence as well as personal behaviour.

  12. Fraud, Ethics, and the Disciplinary Contexts of Science and Scholarship.

    ERIC Educational Resources Information Center

    Fox, Mary Frank

    1990-01-01

    Posits the disciplinary context is the locus of legitimate and illegitimate activity in science and scholarship. Compares structural features of sciences and social sciences that influence malpractice rates, type, and detection. These features include research activity, replication and replicability, coauthorship, plagiarism, locus of creativity…

  13. Developing Communities of Enquiry: Dealing with Social and Ethical Issues in Science at Key Stage 3

    ERIC Educational Resources Information Center

    Dunlop, Lynda; Humes, Gill; Clarke, Linda; Martin, Valerie McKelvey

    2011-01-01

    Reproductive technologies, drug discovery and exploration of the universe are areas of contemporary research that raise issues for individuals and society. Forward Thinking, Northern Ireland uses the development of communities of enquiry to promote discussion of these and other social and ethical issues in science with students aged 11-14 years.…

  14. The Ethical Treatment of Research Assistants: Are We Forsaking Safety for Science?

    ERIC Educational Resources Information Center

    Naufel, Karen Z.; Beike, Denise R.

    2013-01-01

    Science inevitably involves ethical discussions about how research should be implemented. However such discussions often neglect the potential unethical treatment of a third party: the research assistant. Extensive anecdotal evidence suggests that research assistants can experience unique physical, psychological, and social risks when implementing…

  15. Teaching and Assessing Ethics and Social Responsibility in Undergraduate Science: A Position Paper

    ERIC Educational Resources Information Center

    Schultz, Madeleine

    2014-01-01

    Institutional graduate capabilities and discipline threshold learning outcomes require science students to demonstrate ethical conduct and social responsibility. However, the teaching and assessment of these concepts are not straightforward. Australian chemistry academics participated in a workshop in 2013 to discuss and develop teaching and…

  16. Ethics and the Unintended Consequences of Social Research: A Perspective from the Sociology of Science

    ERIC Educational Resources Information Center

    Studer, Kenneth E.; Chubin, Daryl E.

    1977-01-01

    Argues that "successful" social science requires development of a social ethic or sense of research responsibility, and suggests that an individualistic orientation is ineffective in coping with the unintended consequences of social research. Available from: Elsevier Scientific Publishing Company, Box 211, Amsterdam, the Netherlands, single copies…

  17. Collision of Epistemological Frameworks: Religion and Social Science's Unshared Understanding of Ethics

    ERIC Educational Resources Information Center

    Firmin, Michael W.

    2009-01-01

    Religious scholars and social science experts frequently differ and sometimes clash when writing and discussing issues of ethics. Sometimes unshared understandings on fundamental world-view issues is the etiology for these differences. Differences in defining truth, whether philosophically or empirically, often is at the root etiology in these…

  18. Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research

    PubMed Central

    Souzeau, Emmanuelle; Burdon, Kathryn P.; Mackey, David A.; Hewitt, Alex W.; Savarirayan, Ravi; Otlowski, Margaret; Craig, Jamie E.

    2016-01-01

    Whole genome and whole exome sequencing technologies are being increasingly used in research. However, they have the potential to identify incidental findings (IF), findings not related to the indication of the test, raising questions regarding researchers' responsibilities toward the return of this information to participants. In this study we discuss the ethical considerations related to the return of IF to research participants, emphasizing that the type of the study matters and describing the current practice standards. There are currently no legal obligations for researchers to return IF to participants, but some viewpoints consider that researchers might have an ethical one to return IF of clinical validity and clinical utility and that are actionable. The reality is that most IF are complex to interpret, especially since they were not the indication of the test. The clinical utility often depends on the participants' preferences, which can be challenging to conciliate and relies on participants' understanding. In summary, in the context of a lack of clear guidance, researchers need to have a clear plan for the disclosure or nondisclosure of IF from genomic research, balancing their research goals and resources with the participants' rights and their duty not to harm. PMID:26929883

  19. Structural genomics for science and society.

    PubMed

    Hol, W G

    2000-11-01

    The field of robotics is affecting structural biology, enabling the era of structural genomics. The potential impact on protein fold prediction, biology, protein engineering and medicine is immense. Unraveling mysteries in the protein structure universe will require a dedicated effort for decades to come with computational toxicology as possibly a century long challenge.

  20. The Human Genome Project: big science transforms biology and medicine.

    PubMed

    Hood, Leroy; Rowen, Lee

    2013-01-01

    The Human Genome Project has transformed biology through its integrated big science approach to deciphering a reference human genome sequence along with the complete sequences of key model organisms. The project exemplifies the power, necessity and success of large, integrated, cross-disciplinary efforts - so-called 'big science' - directed towards complex major objectives. In this article, we discuss the ways in which this ambitious endeavor led to the development of novel technologies and analytical tools, and how it brought the expertise of engineers, computer scientists and mathematicians together with biologists. It established an open approach to data sharing and open-source software, thereby making the data resulting from the project accessible to all. The genome sequences of microbes, plants and animals have revolutionized many fields of science, including microbiology, virology, infectious disease and plant biology. Moreover, deeper knowledge of human sequence variation has begun to alter the practice of medicine. The Human Genome Project has inspired subsequent large-scale data acquisition initiatives such as the International HapMap Project, 1000 Genomes, and The Cancer Genome Atlas, as well as the recently announced Human Brain Project and the emerging Human Proteome Project.

  1. On using ethical principles of community-engaged research in translational science.

    PubMed

    Khodyakov, Dmitry; Mikesell, Lisa; Schraiber, Ron; Booth, Marika; Bromley, Elizabeth

    2016-05-01

    The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.

  2. Ethical, legal, and social issues related to genomics and cancer research: the impending crisis.

    PubMed

    Ellerin, Bruce E; Schneider, Robert J; Stern, Arnold; Toniolo, Paolo G; Formenti, Silvia C

    2005-11-01

    Cancer research is a multibillion-dollar enterprise validated by the clinical trial process and increasingly defined by genomics. The continued success of the endeavor depends on the smooth functioning of the clinical trial system, which in turn depends on human subject participation. Yet human subject participation can exist only in an atmosphere of trust between research participants and research sponsors, and the advent of genomics has raised a multitude of ethical, legal, and social issues that threaten this trust. The authors examine 6 of these issues: (1) informed consent; (2) privacy, confidentiality, and family disclosure dilemmas; (3) property rights in genomic discoveries; (4) individual and institutional conflicts of interest; (5) insurance and employment issues; and (6) litigation under the federal False Claims Act. The authors conclude that failure to resolve these issues may lead to a sufficient impairment of trust in genomics-based clinical trials on the part of potential research participants that the clinical trial system may implode for lack of willing participants, thus threatening the future of cancer research.

  3. Moving Life Science Ethics Debates Beyond National Borders: Some Empirical Observations

    PubMed Central

    Bezuidenhout, Louise

    2016-01-01

    The life sciences are increasingly being called on to produce “socially robust” knowledge that honors the social contract between science and society. This has resulted in the emergence of a number of “broad social issues” that reflect the ethical tensions in these social contracts. These issues are framed in a variety of ways around the world, evidenced by differences in regulations addressing them. It is important to question whether these variations are simply regulatory variations or in fact reflect a contextual approach to ethics that brings into question the existence of a system of “global scientific ethics”. Nonetheless, within ethics education for scientists these broad social issues are often presented using this scheme of global ethics due to legacies of science ethics pedagogy. This paper suggests this may present barriers to fostering international discourse between communities of scientists, and may cause difficulties in harmonizing (and transporting) national regulations for the governance of these issues. Reinterpreting these variations according to how the content of ethical principles is attributed by communities is proposed as crucial for developing a robust international discourse. To illustrate this, the paper offers some empirical fieldwork data that considers how the concept of dual-use (as a broad social issue) was discussed within African and UK laboratories. Demonstrating that African scientists reshaped the concept of dual-use according to their own research environmental pressures and ascribed alternative content to the principles that underpin it, suggests that the limitations of a “global scientific ethics” system for these issues cannot be ignored. PMID:24046220

  4. Genome Science and Personalized Cancer Treatment (LBNL Summer Lecture Series)

    SciTech Connect

    Gray, Joe

    2009-08-04

    Summer Lecture Series 2009: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

  5. Genome Science and Personalized Cancer Treatment (LBNL Summer Lecture Series)

    ScienceCinema

    Gray, Joe

    2016-07-12

    Summer Lecture Series 2009: Results from the Human Genome Project are enabling scientists to understand how individual cancers form and progress. This information, when combined with newly developed drugs, can optimize the treatment of individual cancers. Joe Gray, director of Berkeley Labs Life Sciences Division and Associate Laboratory Director for Life and Environmental Sciences, will focus on this approach, its promise, and its current roadblocks — particularly with regard to breast cancer.

  6. A burgeoning science of embryological genetics demands a modern ethics.

    PubMed

    Edwards, R G

    2007-09-01

    This brief article discusses the nature of recent scientific advances in reproductive biomedicine and genetics, their moral implications and their effects on society. The pace of research has amplified exponentially, leading society into situations incomprehended by our ancestors. Early studies on reproductive biology in animals, and clinical methods such as artificial insemination by donor spermatozoa, were introduced several centuries ago and led to prolonged ethical disagreements. The 20th century witnessed the introduction of controlled ovulation in laboratory animals, the fertilization of the oocyte and preimplantation embryology in mammalian species. The second half of this century produced an avalanche of knowledge on genetics, developmental biology, the fertilization of the human oocyte in vitro, test-tube babies, preimplantation genetic diagnosis, designer babies, stem cells and a deeper understanding of molecular differentiation in the human embryo. The ethical and legal aspects of these items have led to intense debates on their rights and wrongs. The future may have even more bizarre possibilities such as producing medicines in cow's milk or trees and delaying death for many years.

  7. A burgeoning science of embryological genetics demands a modern ethics.

    PubMed

    Edwards, R G

    2007-09-01

    This brief article discusses the nature of recent scientific advances in reproductive biomedicine and genetics, their moral implications and their effects on society. The pace of research has amplified exponentially, leading society into situations incomprehended by our ancestors. Early studies on reproductive biology in animals, and clinical methods such as artificial insemination by donor spermatozoa, were introduced several centuries ago and led to prolonged ethical disagreements. The 20th century witnessed the introduction of controlled ovulation in laboratory animals, the fertilization of the oocyte and preimplantation embryology in mammalian species. The second half of this century produced an avalanche of knowledge on genetics, developmental biology, the fertilization of the human oocyte in vitro, test-tube babies, preimplantation genetic diagnosis, designer babies, stem cells and a deeper understanding of molecular differentiation in the human embryo. The ethical and legal aspects of these items have led to intense debates on their rights and wrongs. The future may have even more bizarre possibilities such as producing medicines in cow's milk or trees and delaying death for many years. PMID:17822615

  8. Science, Ethics and the Climate Responsibilities of Industrial Carbon Producers

    NASA Astrophysics Data System (ADS)

    Frumhoff, P. C.

    2014-12-01

    The question of responsibility for climate change lies at the heart of societal debate over actions to curb greenhouse gas emissions and prepare for now unavoidable climate impacts. The UN Framework Convention on Climate Change established the principle of "common but differentiated responsibilities" among nations, signaling the recognition that industrialized nations who had produced the lion's share of historic emissions bore particular responsibility for avoiding dangerous interference with the climate system. But climate responsibilities can be distributed in other ways as well. This talk focuses on the scientific, historical and ethical basis for considering the climate responsibilities of the major fossil energy companies that have produced and marketed the coal, oil and natural gas whose use largely drives global warming, often while investing in efforts to discredit the scientific evidence and prevent policies that would encourage a transition to low-carbon energy. Earth scientists and scientific societies who rely on financial support from these companies have an opportunity to consider what ethical stance they might take to align their research, scientific understanding and values.

  9. How can ethics relate to science? The case of stem cell research

    PubMed Central

    Carvalho, Ana Sofia; Ramalho-Santos, João

    2013-01-01

    We live in an era of an important turning point in the relationship between ethics (or, more accurately, bioethics) and science, notably due to both public interest and the gradual tightening of the gap in time between scientific discoveries and ethical reflection. The current bioethics debates of emerging situations (pluripotent stem cells, gene therapy, nanotechnology) have undoubtedly contributed to this change. Today, science happens and bioethics reflects on the possibilities, considers the risks, and advances proposals, which, without being scientific, can also imprint a mark on the path of scientific development. In this article, through the narrative of stem cell research, we will try to illustrate how bringing a bioethical viewpoint to the scientific debate can become a healthy exercise in both ethics and science, especially as narratives shift, as was the case in this field due to the introduction of induced pluripotent stem cells, the advent of which is not easily dissociated from the controversies related to embryo research. We should perhaps welcome this trend as promising for the future relationship between ethics and scientific research, providing a stimulus (and not a block) to the ever-evolving scientific discourse. PMID:23150079

  10. How can ethics relate to science? The case of stem cell research.

    PubMed

    Carvalho, Ana Sofia; Ramalho-Santos, João

    2013-06-01

    We live in an era of an important turning point in the relationship between ethics (or, more accurately, bioethics) and science, notably due to both public interest and the gradual tightening of the gap in time between scientific discoveries and ethical reflection. The current bioethics debates of emerging situations (pluripotent stem cells, gene therapy, nanotechnology) have undoubtedly contributed to this change. Today, science happens and bioethics reflects on the possibilities, considers the risks, and advances proposals, which, without being scientific, can also imprint a mark on the path of scientific development. In this article, through the narrative of stem cell research, we will try to illustrate how bringing a bioethical viewpoint to the scientific debate can become a healthy exercise in both ethics and science, especially as narratives shift, as was the case in this field due to the introduction of induced pluripotent stem cells, the advent of which is not easily dissociated from the controversies related to embryo research. We should perhaps welcome this trend as promising for the future relationship between ethics and scientific research, providing a stimulus (and not a block) to the ever-evolving scientific discourse.

  11. Connecting Past with Present: A Mixed-Methods Science Ethics Course and its Evaluation.

    PubMed

    Semendeferi, Ioanna; Tsiamyrtzis, Panagiotis; Dcosta, Malcolm; Pavlidis, Ioannis

    2016-02-01

    We present a graduate science ethics course that connects cases from the historical record to present realities and practices in the areas of social responsibility, authorship, and human/animal experimentation. This content is delivered with mixed methods, including films, debates, blogging, and practicum; even the instructional team is mixed, including a historian of science and a research scientist. What really unites all of the course's components is the experiential aspect: from acting in historical debates to participating in the current scientific enterprise. The course aims to change the students' culture into one deeply devoted to the science ethics cause. To measure the sought after cultural change, we developed and validated a relevant questionnaire. Results of this questionnaire from students who took the course, demonstrate that the course had the intended effect on them. Furthermore, results of this questionnaire from controls indicate the need for cultural change in that cohort. All these quantitative results are reinforced by qualitative outcomes.

  12. Connecting Past with Present: A Mixed-Methods Science Ethics Course and its Evaluation.

    PubMed

    Semendeferi, Ioanna; Tsiamyrtzis, Panagiotis; Dcosta, Malcolm; Pavlidis, Ioannis

    2016-02-01

    We present a graduate science ethics course that connects cases from the historical record to present realities and practices in the areas of social responsibility, authorship, and human/animal experimentation. This content is delivered with mixed methods, including films, debates, blogging, and practicum; even the instructional team is mixed, including a historian of science and a research scientist. What really unites all of the course's components is the experiential aspect: from acting in historical debates to participating in the current scientific enterprise. The course aims to change the students' culture into one deeply devoted to the science ethics cause. To measure the sought after cultural change, we developed and validated a relevant questionnaire. Results of this questionnaire from students who took the course, demonstrate that the course had the intended effect on them. Furthermore, results of this questionnaire from controls indicate the need for cultural change in that cohort. All these quantitative results are reinforced by qualitative outcomes. PMID:25688028

  13. Ethical issues in human genome epidemiology: a case study based on the Japanese American Family Study in Seattle, Washington.

    PubMed

    Austin, Melissa A

    2002-04-01

    Recent completion of the draft sequence of the human genome has been greeted with both excitement and skepticism, and the potential of this accomplishment for advancing public health has been tempered by ethical concerns about the protection of human subjects. This commentary explores ethical issues arising in human genome epidemiology by using a case study approach based on the ongoing Japanese American Family Study at the University of Washington in Seattle (1994-2003). Ethical issues encountered in designing the study, collecting the data, and reporting the study results are considered. When developing studies, investigators must consider whether to restrict the study to specific racial or ethnic groups and whether community involvement is appropriate. Once the study design is in place, further ethical issues emerge, including obtaining informed consent for DNA banking and protecting the privacy and confidentiality of family members. Finally, investigators must carefully consider whether to report genotype results to study participants and whether pedigrees illustrating the results of the study will be published. Overall, the promise of genomics for improving public health must be pursued based on the fundamental ethical principles of respect for persons, beneficence, and justice.

  14. Exploring the post-genomic world: differing explanatory and manipulatory functions of post-genomic sciences

    PubMed Central

    Holmes, Christina; Carlson, Siobhan M.; McDonald, Fiona; Jones, Mavis; Graham, Janice

    2016-01-01

    Richard Lewontin proposed that the ability of a scientific field to create a narrative for public understanding garners it social relevance. This article applies Lewontin's conceptual framework of the functions of science (manipulatory and explanatory) to compare and explain the current differences in perceived societal relevance of genetics/genomics and proteomics. We provide three examples to illustrate the social relevance and strong cultural narrative of genetics/genomics for which no counterpart exists for proteomics. We argue that the major difference between genetics/genomics and proteomics is that genomics has a strong explanatory function, due to the strong cultural narrative of heredity. Based on qualitative interviews and observations of proteomics conferences, we suggest that the nature of proteins, lack of public understanding, and theoretical complexity exacerbates this difference for proteomics. Lewontin's framework suggests that social scientists may find that omics sciences affect social relations in different ways than past analyses of genetics. PMID:27134568

  15. The Human Genome Project: big science transforms biology and medicine

    PubMed Central

    2013-01-01

    The Human Genome Project has transformed biology through its integrated big science approach to deciphering a reference human genome sequence along with the complete sequences of key model organisms. The project exemplifies the power, necessity and success of large, integrated, cross-disciplinary efforts - so-called ‘big science’ - directed towards complex major objectives. In this article, we discuss the ways in which this ambitious endeavor led to the development of novel technologies and analytical tools, and how it brought the expertise of engineers, computer scientists and mathematicians together with biologists. It established an open approach to data sharing and open-source software, thereby making the data resulting from the project accessible to all. The genome sequences of microbes, plants and animals have revolutionized many fields of science, including microbiology, virology, infectious disease and plant biology. Moreover, deeper knowledge of human sequence variation has begun to alter the practice of medicine. The Human Genome Project has inspired subsequent large-scale data acquisition initiatives such as the International HapMap Project, 1000 Genomes, and The Cancer Genome Atlas, as well as the recently announced Human Brain Project and the emerging Human Proteome Project. PMID:24040834

  16. Los Alamos Science: The Human Genome Project. Number 20, 1992

    DOE R&D Accomplishments Database

    Cooper, N. G.; Shea, N. eds.

    1992-01-01

    This document provides a broad overview of the Human Genome Project, with particular emphasis on work being done at Los Alamos. It tries to emphasize the scientific aspects of the project, compared to the more speculative information presented in the popular press. There is a brief introduction to modern genetics, including a review of classic work. There is a broad overview of the Genome Project, describing what the project is, what are some of its major five-year goals, what are major technological challenges ahead of the project, and what can the field of biology, as well as society expect to see as benefits from this project. Specific results on the efforts directed at mapping chromosomes 16 and 5 are discussed. A brief introduction to DNA libraries is presented, bearing in mind that Los Alamos has housed such libraries for many years prior to the Genome Project. Information on efforts to do applied computational work related to the project are discussed, as well as experimental efforts to do rapid DNA sequencing by means of single-molecule detection using applied spectroscopic methods. The article introduces the Los Alamos staff which are working on the Genome Project, and concludes with brief discussions on ethical, legal, and social implications of this work; a brief glimpse of genetics as it may be practiced in the next century; and a glossary of relevant terms.

  17. Los Alamos Science: The Human Genome Project. Number 20, 1992

    SciTech Connect

    Cooper, N G; Shea, N

    1992-01-01

    This article provides a broad overview of the Human Genome Project, with particular emphasis on work being done at Los Alamos. It tries to emphasize the scientific aspects of the project, compared to the more speculative information presented in the popular press. There is a brief introduction to modern genetics, including a review of classic work. There is a broad overview of the Genome Project, describing what the project is, what are some of its major five-year goals, what are major technological challenges ahead of the project, and what can the field of biology, as well as society expect to see as benefits from this project. Specific results on the efforts directed at mapping chromosomes 16 and 5 are discussed. A brief introduction to DNA libraries is presented, bearing in mind that Los Alamos has housed such libraries for many years prior to the Genome Project. Information on efforts to do applied computational work related to the project are discussed, as well as experimental efforts to do rapid DNA sequencing by means of single-molecule detection using applied spectroscopic methods. The article introduces the Los Alamos staff which are working on the Genome Project, and concludes with brief discussions on ethical, legal, and social implications of this work; a brief glimpse of genetics as it may be practiced in the next century; and a glossary of relevant terms.

  18. Integrating Public Health and Deliberative Public Bioethics: Lessons from the Human Genome Project Ethical, Legal, and Social Implications Program.

    PubMed

    Meagher, Karen M; Lee, Lisa M

    2016-01-01

    Public health policy works best when grounded in firm public health standards of evidence and widely shared social values. In this article, we argue for incorporating a specific method of ethical deliberation--deliberative public bioethics--into public health. We describe how deliberative public bioethics is a method of engagement that can be helpful in public health. Although medical, research, and public health ethics can be considered some of what bioethics addresses, deliberative public bioethics offers both a how and where. Using the Human Genome Project Ethical, Legal, and Social Implications program as an example of effective incorporation of deliberative processes to integrate ethics into public health policy, we examine how deliberative public bioethics can integrate both public health and bioethics perspectives into three areas of public health practice: research, education, and health policy. We then offer recommendations for future collaborations that integrate deliberative methods into public health policy and practice.

  19. Spatially explicit data: stewardship and ethical challenges in science.

    PubMed

    Hartter, Joel; Ryan, Sadie J; Mackenzie, Catrina A; Parker, John N; Strasser, Carly A

    2013-09-01

    Scholarly communication is at an unprecedented turning point created in part by the increasing saliency of data stewardship and data sharing. Formal data management plans represent a new emphasis in research, enabling access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research. Data sharing has recently transformed the practice, scope, content, and applicability of research in several disciplines, in particular in relation to spatially specific data. This lends exciting potentiality, but the most effective ways in which to implement such changes, particularly for disciplines involving human subjects and other sensitive information, demand consideration. Data management plans, stewardship, and sharing, impart distinctive technical, sociological, and ethical challenges that remain to be adequately identified and remedied. Here, we consider these and propose potential solutions for their amelioration.

  20. Biological data sciences in genome research.

    PubMed

    Schatz, Michael C

    2015-10-01

    The last 20 years have been a remarkable era for biology and medicine. One of the most significant achievements has been the sequencing of the first human genomes, which has laid the foundation for profound insights into human genetics, the intricacies of regulation and development, and the forces of evolution. Incredibly, as we look into the future over the next 20 years, we see the very real potential for sequencing more than 1 billion genomes, bringing even deeper insight into human genetics as well as the genetics of millions of other species on the planet. Realizing this great potential for medicine and biology, though, will only be achieved through the integration and development of highly scalable computational and quantitative approaches that can keep pace with the rapid improvements to biotechnology. In this perspective, I aim to chart out these future technologies, anticipate the major themes of research, and call out the challenges ahead. One of the largest shifts will be in the training used to prepare the class of 2035 for their highly interdisciplinary world.

  1. Biological data sciences in genome research.

    PubMed

    Schatz, Michael C

    2015-10-01

    The last 20 years have been a remarkable era for biology and medicine. One of the most significant achievements has been the sequencing of the first human genomes, which has laid the foundation for profound insights into human genetics, the intricacies of regulation and development, and the forces of evolution. Incredibly, as we look into the future over the next 20 years, we see the very real potential for sequencing more than 1 billion genomes, bringing even deeper insight into human genetics as well as the genetics of millions of other species on the planet. Realizing this great potential for medicine and biology, though, will only be achieved through the integration and development of highly scalable computational and quantitative approaches that can keep pace with the rapid improvements to biotechnology. In this perspective, I aim to chart out these future technologies, anticipate the major themes of research, and call out the challenges ahead. One of the largest shifts will be in the training used to prepare the class of 2035 for their highly interdisciplinary world. PMID:26430150

  2. Biological data sciences in genome research

    PubMed Central

    Schatz, Michael C.

    2015-01-01

    The last 20 years have been a remarkable era for biology and medicine. One of the most significant achievements has been the sequencing of the first human genomes, which has laid the foundation for profound insights into human genetics, the intricacies of regulation and development, and the forces of evolution. Incredibly, as we look into the future over the next 20 years, we see the very real potential for sequencing more than 1 billion genomes, bringing even deeper insight into human genetics as well as the genetics of millions of other species on the planet. Realizing this great potential for medicine and biology, though, will only be achieved through the integration and development of highly scalable computational and quantitative approaches that can keep pace with the rapid improvements to biotechnology. In this perspective, I aim to chart out these future technologies, anticipate the major themes of research, and call out the challenges ahead. One of the largest shifts will be in the training used to prepare the class of 2035 for their highly interdisciplinary world. PMID:26430150

  3. Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions.

    PubMed

    Riesch, Hauke; Potter, Clive

    2014-01-01

    Citizen science as a way of communicating science and doing public engagement has over the past decade become the focus of considerable hopes and expectations. It can be seen as a win-win situation, where scientists get help from the public and the participants get a public engagement experience that involves them in real and meaningful scientific research. In this paper we present the results of a series of qualitative interviews with scientists who participated in the 'OPAL' portfolio of citizen science projects that has been running in England since 2007: What were their experiences of participating in citizen science? We highlight two particular sets of issues that our participants have voiced, methodological/epistemological and ethical issues. While we share the general enthusiasm over citizen science, we hope that the research in this paper opens up more debate over the potential pitfalls of citizen science as seen by the scientists themselves.

  4. A Pedagogical Model for Ethical Inquiry into Socioscientific Issues In Science

    NASA Astrophysics Data System (ADS)

    Saunders, Kathryn J.; Rennie, Léonie J.

    2013-02-01

    Internationally there is concern that many science teachers do not address socioscientific issues (SSI) in their classrooms, particularly those that are controversial. However with increasingly complex, science-based dilemmas being presented to society, such as cloning, genetic screening, alternative fuels, reproductive technologies and vaccination, there is a growing call for students to be more scientifically literate and to be able to make informed decisions on issues related to these dilemmas. There have been shifts in science curricula internationally towards a focus on scientific literacy, but research indicates that many secondary science teachers lack the support and confidence to address SSI in their classrooms. This paper reports on a project that developed a pedagogical model that scaffolded teachers through a series of stages in exploring a controversial socioscientific issue with students and supported them in the use of pedagogical strategies and facilitated ways of ethical thinking. The study builds on existing frameworks of ethical thinking. It presents an argument that in today's increasingly pluralistic society, these traditional frameworks need to be extended to acknowledge other worldviews and identities. Pluralism is proposed as an additional framework of ethical thinking in the pedagogical model, from which multiple identities, including cultural, ethnic, religious and gender perspectives, can be explored.

  5. The MICHR Genomic DNA BioLibrary: An Empirical Study of the Ethics of Biorepository Development.

    PubMed

    Roessler, Blake J; Steneck, Nicholas H; Connally, Lisa

    2015-02-01

    In this article, we report on an effort to study the development and usefulness of a large, broad-use, opt-in biorepository for genomic research, focusing on three ethical issues: providing appropriate understanding, recruiting in ways that do not comprise autonomous decisions, and assessing costs versus benefits. We conclude the following: (a) Understanding can be improved by separating the task of informing subjects from documenting informed consent (Common Rule) and permission to use personal health information and samples for research (Health Insurance Portability and Accountability Act [HIPAA]); however, regulations might have to be changed to accommodate this approach. (b) Changing recruiting methods increases efficiency but can interfere with subject autonomy. (c) Finally, we propose a framework for the objective evaluation of the utility of biorepositories and suggest that more attention needs to be paid to use and sustainability.

  6. The MICHR Genomic DNA BioLibrary: An Empirical Study of the Ethics of Biorepository Development

    PubMed Central

    Roessler, Blake J.; Steneck, Nicholas H.; Powell, Lisa

    2015-01-01

    In this article, we report on an effort to study the development and usefulness of a large, broad-use, opt-in biorepository for genomic research, focusing on three ethical issues: providing appropriate understanding, recruiting in ways that do not comprise autonomous decisions, and assessing costs vs. benefits. We conclude: 1) Understanding can be improved by separating the task of informing subjects from documenting informed consent (Common Rule) and permission to use personal health information and samples for research (HIPAA); however, regulations might have to be changed to accommodate this approach. 2) Changing recruiting methods increases efficiency but can interfere with subject autonomy. 3) Finally, we propose a framework for the objective evaluation of the utility of biorepositories and suggest that more attention needs to be paid to use and sustainability. PMID:25742665

  7. Managing the Ethical Issues of Genomic Research using Pathology Specimens1

    PubMed Central

    Zeps, Nikolajs; Bledsoe, Marianna J

    2015-01-01

    Biobanks of human biospecimens involving tissue taken from surgery require close relationships with diagnostic pathology practices. As most of the tissue will be analysed using genetic or genomic technologies there is the possibility that new information is created that could be of relevance to the donors. Although attention has been recently focused on the responsibilities that may arise from researchers and biobanks in terms of giving back individual genetic research results (IGRRs) to research participants, little has been said in relation to the role of pathology services. In this Commentary, we summarise the issues with respect to pathology services and what guidelines and professional practice documents say about their responsibilities. We also provide points to consider in the development of an ethically defensible plan for giving back individual research results. PMID:25944969

  8. Screening workers for genetic hypersusceptibility: potential ethical, legal, and social implications from the Human Genome Project.

    PubMed

    Wicks, A C; Sever, L E; Harty, R; Gajewski, S W; Marcus-Smith, M

    1999-01-01

    One of the potential outcomes of the Human Genome Project will be the ability to identify individuals who are at increased risk of adverse health effects following exposure to hazardous substances in the workplace because of genetic hypersusceptibility. The ability to identify such individuals is likely to lead to the inclusion of genetic screening in worker protection programs. This technology and its applications will have a number of potential ethical, legal, and social implications. In this commentary, the authors examine five broad topics relating to the use of screening for genetic hypersusceptibility in the workplace: (1) issues of risk; (2) the rationale and legal basis for screening; (3) the privacy concerns of workers; (4) the confidentiality of test results; and (5) potential discrimination. The authors close by suggesting some guidelines for developing policies regarding genetic screening.

  9. Genomics: The Science and Technology Behind the Human Genome Project (by Charles R. Cantor and Cassandra L. Smith)

    NASA Astrophysics Data System (ADS)

    Serra, Reviewed By Martin J.

    2000-01-01

    several examples of genetic and genome analysis, additional problem/homework sets would need to be developed to ensure student comprehension. The text steers clear of the ethical implications of the Human Genome Initiative and remains true to its subtitle The Science and Technology .

  10. Big data, open science and the brain: lessons learned from genomics.

    PubMed

    Choudhury, Suparna; Fishman, Jennifer R; McGowan, Michelle L; Juengst, Eric T

    2014-01-01

    The BRAIN Initiative aims to break new ground in the scale and speed of data collection in neuroscience, requiring tools to handle data in the magnitude of yottabytes (10(24)). The scale, investment and organization of it are being compared to the Human Genome Project (HGP), which has exemplified "big science" for biology. In line with the trend towards Big Data in genomic research, the promise of the BRAIN Initiative, as well as the European Human Brain Project, rests on the possibility to amass vast quantities of data to model the complex interactions between the brain and behavior and inform the diagnosis and prevention of neurological disorders and psychiatric disease. Advocates of this "data driven" paradigm in neuroscience argue that harnessing the large quantities of data generated across laboratories worldwide has numerous methodological, ethical and economic advantages, but it requires the neuroscience community to adopt a culture of data sharing and open access to benefit from them. In this article, we examine the rationale for data sharing among advocates and briefly exemplify these in terms of new "open neuroscience" projects. Then, drawing on the frequently invoked model of data sharing in genomics, we go on to demonstrate the complexities of data sharing, shedding light on the sociological and ethical challenges within the realms of institutions, researchers and participants, namely dilemmas around public/private interests in data, (lack of) motivation to share in the academic community, and potential loss of participant anonymity. Our paper serves to highlight some foreseeable tensions around data sharing relevant to the emergent "open neuroscience" movement.

  11. Tropes, History, and Ethics in Professional Discourse and Information Science.

    ERIC Educational Resources Information Center

    Day, Ronald E.

    2000-01-01

    This article argues that professional discourses align themselves with dominant ideological and social forces by means of language. Examines how professional discourses, which are foundational for library and information science theory and practice, establish themselves in culture and project history, past and future, by means of appropriating…

  12. Educational technologies and the teaching of ethics in science and engineering.

    PubMed

    Loui, Michael C

    2005-07-01

    To support the teaching of ethics in science and engineering, educational technologies offer a variety of functions: communication between students and instructors, production of documents, distribution of documents, archiving of class sessions, and access to remote resources. Instructors may choose to use these functions of the technologies at different levels of intensity, to support a variety of pedagogies, consistent with accepted good practices. Good pedagogical practices are illustrated in this paper with four examples of uses of educational technologies in the teaching of ethics in science and engineering. Educational technologies impose costs for the purchase of hardware, licensing of software, hiring of support personnel, and training of instructors. Whether the benefits justify these costs is an unsettled question. While many researchers are studying the possible benefits of educational technologies, all instructors should assess the effectiveness of their practices.

  13. Tracing "Ethical Subjectivities" in Science Education: How Biology Textbooks Can Frame Ethico-Political Choices for Students

    NASA Astrophysics Data System (ADS)

    Bazzul, Jesse

    2015-02-01

    This article describes how biology textbooks can work to discursively constitute a particular kind of "ethical subjectivity." Not only do textbooks constrain the possibilities for thought and action regarding ethical issues, they also require a certain kind of "subject" to partake in ethical exercises and questions. This study looks at how ethical questions/exercises found in four Ontario textbooks require students and teachers to think and act along specific lines. These include making ethical decisions within a legal-juridical frame; deciding what kinds of research should be publically funded; optimizing personal and population health; and regulation through policy and legislation. While engaging ethical issues in these ways is useful, educators should also question the kinds of (ethical) subjectivities that are partially constituted by discourses of science education. If science education is going to address twenty-first century problems such as climate change and social inequality, educators need to address how the possibilities for ethical engagement afforded to students work to constitute specific kinds of "ethical actors."

  14. Ethics across the computer science curriculum: privacy modules in an introductory database course.

    PubMed

    Appel, Florence

    2005-10-01

    This paper describes the author's experience of infusing an introductory database course with privacy content, and the on-going project entitled Integrating Ethics Into the Database Curriculum, that evolved from that experience. The project, which has received funding from the National Science Foundation, involves the creation of a set of privacy modules that can be implemented systematically by database educators throughout the database design thread of an undergraduate course.

  15. Ethics, politics and protests: using contentious issues in reproductive sciences as educational opportunities.

    PubMed

    Knight, J W

    2012-08-01

    Contentious issues and polarized viewpoints can be utilized in the classroom and beyond to create a reflective dialogue among students and citizens. This dialogue leads to both a greater understanding, as well as an enhanced appreciation of alternative viewpoints. Exploring and discussing the scientific, ethical, moral, political, legal and societal aspects of contentious issues of human reproduction provides ideal subject matter for developing critical thinking skills in the field of reproductive science. PMID:22827349

  16. The effect of genomics on health services management: ethical and legal perspectives.

    PubMed

    Mehlman, M J

    2001-01-01

    The growing use of genetic testing for diagnostic and predictive purposes, and for the purpose of selecting therapeutic regimens with better risk-benefit ratios for patients, raises numerous legal and ethical challenges. Researchers and institutional review boards must pay careful attention to the need to obtain informed consent from subjects. The FDA will face increased pressure to more carefully regulate the accuracy of genetic testing. Clinicians will need to safeguard the privacy and confidentiality of sensitive patient information, especially when testing is performed in settings in which the information may be readily accessible to insurers and employers. Novel genomic treatments may increase liability for drug manufacturers, but physicians and other healthcare providers, including health plans' drug formularies, will bear the primary liability risk. Difficult questions of distributive justice also must be faced if third-party payers resist covering genomic services because of their cost. Down the road, more aggressive gene therapy techniques and the ability to test for non-disease traits will tax our notions of fairness, equality, and the limits of professional authority. PMID:11299702

  17. Racism and human genome diversity research: the ethical limits of "population thinking".

    PubMed

    Gannett, L

    2001-01-01

    This paper questions the prevailing historical understanding that scientific racism "retreated" in the 1950s when anthropology adopted the concepts and methods of population genetics and race was recognized to be a social construct and replaced by the concept of population. More accurately, a "populational" concept of race was substituted for a "typological one"--this is demonstrated by looking at the work of Theodosius Dobzhansky circa 1950. The potential for contemporary research in human population genetics to contribute to racism needs to be considered with respect to the ability of the typological-population distinction to arbitrate boundaries between racist society and nonracist, even anti-racist, science. I point out some ethical limits of "population thinking" in doing so.

  18. Ethical and legal implications of whole genome and whole exome sequencing in African populations

    PubMed Central

    2013-01-01

    Background Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for biomedical research. Discussion Funding agencies and journals often require submission of genomic data from research participants to databases that allow open or controlled data access for all investigators. Access to such genotype-phenotype and pedigree data, however, needs careful control in order to prevent identification of individuals or families. This is particularly the case in Africa, where many researchers and their patients are inexperienced in the ethical issues accompanying whole genome and exome research; and where an historical unidirectional flow of samples and data out of Africa has created a sense of exploitation and distrust. In the current study, we analysed the implications of the anticipated surge of next generation sequencing data in Africa and the subsequent data sharing concepts on the protection of privacy of research subjects. We performed a retrospective analysis of the informed consent process for the continent and the rest-of-the-world and examined relevant legislation, both current and proposed. We investigated the following issues: (i) informed consent, including guidelines for performing culturally-sensitive next generation sequencing research in Africa and availability of suitable informed consent documents; (ii) data security and subject privacy whilst practicing data sharing; (iii) conveying the implications of such concepts to research participants in resource

  19. Controlling our destinies: Historical, philosophical, social and ethical perspectives on the Human Genome Project: Final report, July 1, 1995-June 30, 1996

    SciTech Connect

    Sloan, P.R.

    1996-09-25

    This report briefly describes the efforts by the organizing committee in preparation for the conference entitled Controlling Our Destinies: Historical, Philosophical, Social, and Ethical Perspectives on the Human Genome Project. The conference was held October 5-8, 1995.

  20. Societal and ethical issues in human biomonitoring – a view from science studies

    PubMed Central

    Bauer, Susanne

    2008-01-01

    Background Human biomonitoring (HBM) has rapidly gained importance. In some epidemiological studies, the measurement and use of biomarkers of exposure, susceptibility and disease have replaced traditional environmental indicators. While in HBM, ethical issues have mostly been addressed in terms of informed consent and confidentiality, this paper maps out a larger array of societal issues from an epistemological perspective, i.e. bringing into focus the conditions of how and what is known in environmental health science. Methods In order to analyse the effects of HBM and the shift towards biomarker research in the assessment of environmental pollution in a broader societal context, selected analytical frameworks of science studies are introduced. To develop the epistemological perspective, concepts from "biomedical platform sociology" and the notion of "epistemic cultures" and "thought styles" are applied to the research infrastructures of HBM. Further, concepts of "biocitizenship" and "civic epistemologies" are drawn upon as analytical tools to discuss the visions and promises of HBM as well as related ethical problematisations. Results In human biomonitoring, two different epistemological cultures meet; these are environmental science with for instance pollution surveys and toxicological assessments on the one hand, and analytical epidemiology investigating the association between exposure and disease in probabilistic risk estimation on the other hand. The surveillance of exposure and dose via biomarkers as envisioned in HBM is shifting the site of exposure monitoring to the human body. Establishing an HBM platform faces not only the need to consider individual decision autonomy as an ethics issue, but also larger epistemological and societal questions, such as the mode of evidence demanded in science, policy and regulation. Conclusion The shift of exposure monitoring towards the biosurveillance of human populations involves fundamental changes in the ways

  1. Assessing Veterinary and Animal Science Students' Moral Judgment Development on Animal Ethics Issues.

    PubMed

    Verrinder, Joy M; Phillips, Clive J C

    2015-01-01

    Little has been done to assess veterinarians' moral judgment in relation to animal ethics issues. Following development of the VetDIT, a new moral judgment measure for animal ethics issues, this study aimed to refine and further validate the VetDIT, and to identify effects of teaching interventions on moral judgment and changes in moral judgment over time. VetDIT-V1 was refined into VetDIT-V2, and V3 was developed as a post-intervention test to prevent repetition. To test these versions for comparability, veterinary and animal science students (n=271) were randomly assigned to complete different versions. The VetDIT discriminates between stages of moral judgment, condensed into three schemas: Personal Interest (PI), Maintaining Norms (MN), and Universal Principles (UP). There were no differences in the scores for MN and UP between the versions, and we equated PI scores to account for differences between versions. Veterinary science students (n=130) who completed a three-hour small-group workshop on moral development theory and ethical decision making increased their use of UP in moral reasoning, whereas students (n=271) who received similar information in a 50-minute lecture did not. A longitudinal comparison of matched first- and third-year students (n=39) revealed no moral judgment development toward greater use of UP. The VetDIT is therefore useful for assessing moral judgment of animal and human ethics issues in veterinary and other animal-related professions. Intensive small-group workshops using moral development knowledge and skills, rather than lectures, are conducive to developing veterinary students' moral judgment.

  2. Assessing Veterinary and Animal Science Students' Moral Judgment Development on Animal Ethics Issues.

    PubMed

    Verrinder, Joy M; Phillips, Clive J C

    2015-01-01

    Little has been done to assess veterinarians' moral judgment in relation to animal ethics issues. Following development of the VetDIT, a new moral judgment measure for animal ethics issues, this study aimed to refine and further validate the VetDIT, and to identify effects of teaching interventions on moral judgment and changes in moral judgment over time. VetDIT-V1 was refined into VetDIT-V2, and V3 was developed as a post-intervention test to prevent repetition. To test these versions for comparability, veterinary and animal science students (n=271) were randomly assigned to complete different versions. The VetDIT discriminates between stages of moral judgment, condensed into three schemas: Personal Interest (PI), Maintaining Norms (MN), and Universal Principles (UP). There were no differences in the scores for MN and UP between the versions, and we equated PI scores to account for differences between versions. Veterinary science students (n=130) who completed a three-hour small-group workshop on moral development theory and ethical decision making increased their use of UP in moral reasoning, whereas students (n=271) who received similar information in a 50-minute lecture did not. A longitudinal comparison of matched first- and third-year students (n=39) revealed no moral judgment development toward greater use of UP. The VetDIT is therefore useful for assessing moral judgment of animal and human ethics issues in veterinary and other animal-related professions. Intensive small-group workshops using moral development knowledge and skills, rather than lectures, are conducive to developing veterinary students' moral judgment. PMID:26200702

  3. Learning about the Human Genome. Part 2: Resources for Science Educators. ERIC Digest.

    ERIC Educational Resources Information Center

    Haury, David L.

    This ERIC Digest identifies how the human genome project fits into the "National Science Education Standards" and lists Human Genome Project Web sites found on the World Wide Web. It is a resource companion to "Learning about the Human Genome. Part 1: Challenge to Science Educators" (Haury 2001). The Web resources and instructional materials can…

  4. Determination of Pre-Service Science Teachers' Level of Awareness of Environmental Ethics in Relation to Different Variables

    ERIC Educational Resources Information Center

    Keles, Özgül; Özer, Nilgün

    2016-01-01

    The purpose of the current study is to determine the pre-service science teachers' awareness levels of environmental ethics in relation to different variables. The sampling of the present study is comprised of 1,023 third and fourth year pre-service science teachers selected from 12 different universities in the spring term of 2013-2014 academic…

  5. Human Genome Diversity Project. Summary of planning workshop 3(B): Ethical and human-rights implications

    SciTech Connect

    1993-12-31

    The third planning workshop of the Human Genome Diversity Project was held on the campus of the US National Institutes of Health in Bethesda, Maryland, from February 16 through February 18, 1993. The second day of the workshop was devoted to an exploration of the ethical and human-rights implications of the Project. This open meeting centered on three roundtables, involving 12 invited participants, and the resulting discussions among all those present. Attendees and their affiliations are listed in the attached Appendix A. The discussion was guided by a schedule and list of possible issues, distributed to all present and attached as Appendix B. This is a relatively complete, and thus lengthy, summary of the comments at the meeting. The beginning of the summary sets out as conclusions some issues on which there appeared to be widespread agreement, but those conclusions are not intended to serve as a set of detailed recommendations. The meeting organizer is distributing his recommendations in a separate memorandum; recommendations from others who attended the meeting are welcome and will be distributed by the meeting organizer to the participants and to the Project committee.

  6. Life Sciences Division and Center for Human Genome Studies

    SciTech Connect

    Spitzmiller, D.; Bradbury, M.; Cram, S.

    1992-05-01

    This report summarizes the research and development activities of Los Alamos National Laboratories Life Sciences Division and biological aspects of the Center for Human Genome Studies for the calendar year 1991. Selected research highlights include: yeast artificial chromosome libraries from flow sorted human chromosomes 16 and 21; distances between the antigen binding sites of three murine antibody subclasses measured using neutron and x-ray scattering; NFCR 10th anniversary highlights; kinase-mediated differences found in the cell cycle regulation of normal and transformed cells; and detecting mutations that cause Gaucher's disease by denaturing gradient gel electrophoresis. Project descriptions include: genomic structure and regulation, molecular structure, cytometry, cell growth and differentiation, radiation biology and carcinogenesis, and pulmonary biology.

  7. Incorporating Genomics and Bioinformatics across the Life Sciences Curriculum

    SciTech Connect

    Ditty, Jayna L.; Kvaal, Christopher A.; Goodner, Brad; Freyermuth, Sharyn K.; Bailey, Cheryl; Britton, Robert A.; Gordon, Stuart G.; Heinhorst, Sabine; Reed, Kelynne; Xu, Zhaohui; Sanders-Lorenz, Erin R.; Axen, Seth; Kim, Edwin; Johns, Mitrick; Scott, Kathleen; Kerfeld, Cheryl A.

    2011-08-01

    Undergraduate life sciences education needs an overhaul, as clearly described in the National Research Council of the National Academies publication BIO 2010: Transforming Undergraduate Education for Future Research Biologists. Among BIO 2010's top recommendations is the need to involve students in working with real data and tools that reflect the nature of life sciences research in the 21st century. Education research studies support the importance of utilizing primary literature, designing and implementing experiments, and analyzing results in the context of a bona fide scientific question in cultivating the analytical skills necessary to become a scientist. Incorporating these basic scientific methodologies in undergraduate education leads to increased undergraduate and post-graduate retention in the sciences. Toward this end, many undergraduate teaching organizations offer training and suggestions for faculty to update and improve their teaching approaches to help students learn as scientists, through design and discovery (e.g., Council of Undergraduate Research [www.cur.org] and Project Kaleidoscope [www.pkal.org]). With the advent of genome sequencing and bioinformatics, many scientists now formulate biological questions and interpret research results in the context of genomic information. Just as the use of bioinformatic tools and databases changed the way scientists investigate problems, it must change how scientists teach to create new opportunities for students to gain experiences reflecting the influence of genomics, proteomics, and bioinformatics on modern life sciences research. Educators have responded by incorporating bioinformatics into diverse life science curricula. While these published exercises in, and guidelines for, bioinformatics curricula are helpful and inspirational, faculty new to the area of bioinformatics inevitably need training in the theoretical underpinnings of the algorithms. Moreover, effectively integrating bioinformatics into

  8. Whitehead Policy Symposium. The Human Genome Project: Science, law, and social change in the 21st century

    SciTech Connect

    Nichols, E.K.

    2000-02-17

    Advances in the biomedical sciences, especially in human genomics, will dramatically influence law, medicine, public health, and many other sectors of our society in the decades ahead. The public already senses the revolutionary nature of genomic knowledge. In the US and Europe, we have seen widespread discussions about genetic discrimination in health insurance; privacy issues raised by the proliferation of DNA data banks; the challenge of interpreting new DNA diagnostic tests; changing definitions of what it means to be healthy; and the science and ethics of cloning animals and human beings. The primary goal of the Whitehead/ASLME Policy Symposium was to provide a bridge between the research community and professionals, who were just beginning to grasp the potential impact of new genetic technologies on their fields. The ''Human Genome Project: Science, Law, and Social Change in the 21st Century'' initially was designed as a forum for 300-500 physicians, lawyers, consumers, ethicists, and scientists to explore the impact of new genetic technologies and prepare for the challenges ahead.

  9. Health sciences librarians' awareness and assessment of the Medical Library Association Code of Ethics for Health Sciences Librarianship: the results of a membership survey

    PubMed Central

    Byrd, Gary D.; Devine, Patricia J.; Corcoran, Kate E.

    2014-01-01

    Objective: The Medical Library Association (MLA) Board of Directors and president charged an Ethical Awareness Task Force and recommended a survey to determine MLA members' awareness of and opinions about the current Code of Ethics for Health Sciences Librarianship. Methods: The task force and MLA staff crafted a survey to determine: (1) awareness of the MLA code and its provisions, (2) use of the MLA code to resolve professional ethical issues, (3) consultation of other ethical codes or guides, (4) views regarding the relative importance of the eleven MLA code statements, (5) challenges experienced in following any MLA code provisions, and (6) ethical problems not clearly addressed by the code. Results: Over 500 members responded (similar to previous MLA surveys), and while most were aware of the code, over 30% could not remember when they had last read or thought about it, and nearly half had also referred to other codes or guidelines. The large majority thought that: (1) all code statements were equally important, (2) none were particularly difficult or challenging to follow, and (3) the code covered every ethical challenge encountered in their professional work. Implications: Comments provided by respondents who disagreed with the majority views suggest that the MLA code could usefully include a supplementary guide with practical advice on how to reason through a number of ethically challenging situations that are typically encountered by health sciences librarians. PMID:25349544

  10. Ethical decision making in the conduct of research: role of individual, contextual and organizational factors. Commentary on "Science, human nature, and a new paradigm for ethics education".

    PubMed

    Langlais, Philip J

    2012-09-01

    Despite the importance of scientific integrity to the well-being of society, recent findings suggest that training and mentoring in the responsible conduct of research are not very reliable or effective inhibitors of research misbehavior. Understanding how and why individual scientists decide to behave in ways that conform to or violate norms and standards of research is essential to the development of more effective training programs and the creation of more supportive environments. Scholars in business management, psychology, and other disciplines have identified many important factors that affect ethical behavior, including individual, contextual, and organizational factors. Surprisingly little research has been conducted to examine the role of these factors in either the development of ethical decision-making skills, or their applicability to ethical issues commonly encountered in research and other scholarly and professional activities. Interdisciplinary approaches combined with research and discipline relevant paradigms should greatly enhance understanding of the individual contextual and organizational factors involved in ethical and unethical research conduct. Such studies will inform and facilitate the development of more effective ethics education programs in the sciences and engineering professions.

  11. The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues

    PubMed Central

    Charlebois, Kathleen; Palmour, Nicole; Knoppers, Bartha Maria

    2016-01-01

    This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers’ perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers’ legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients’ control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale. PMID:27755563

  12. Life Sciences Division and Center for Human Genome Studies 1994

    SciTech Connect

    Cram, L.S.; Stafford, C.

    1995-09-01

    This report summarizes the research and development activities of the Los Alamos National Laboratory`s Life Sciences Division and the biological aspects of the Center for Human Genome Studies for the calendar year 1994. The technical portion of the report is divided into two parts, (1) selected research highlights and (2) research projects and accomplishments. The research highlights provide a more detailed description of a select set of projects. A technical description of all projects is presented in sufficient detail so that the informed reader will be able to assess the scope and significance of each project. Summaries useful to the casual reader desiring general information have been prepared by the group leaders and appear in each group overview. Investigators on the staff of the Life Sciences Division will be pleased to provide further information.

  13. Toward an essential ethic for teaching science in the new millennium

    NASA Astrophysics Data System (ADS)

    Hays, Irene De La Bretonne

    The purpose of this study was to identify and explore values and views that might underlie an essential ethic for teaching science in the new millennium. With such an ethic, teachers may be better able to prepare young people to form and fully participate in communities that restore and sustain Earth. Reviewed in the literature for this study were changing philosophies and theories from early indigenous cultures to the present on the nature of nature, the value of nature, and the human relationship with nature. These philosophies and theories were found to influence values that today underlie the work scientists do and the ways young people are educated in science. In the study, two groups of participants--Nature Writers and scientists--revealed the essence and meaning of their relationship with nature. A two-stage, modified Delphi method was used for collecting data. Stage One comprised the first "round" of the Delphi and involved content analysis of writings by a select group of U.S. Nature Writers from the early 1800s to the present. In Stage Two, comprising three rounds of the modified Delphi, perspectives of Nature Writers were imbedded in questionnaires and presented for response to a select group of scientists connected with research and education at National Laboratories across the country. Finally, results from each participant group were brought together in a recursive process, one with the other, to determine findings. Strong Earth-care values, including receptivity, responsibility, interdependence, respect, cooperation, love, and care, were found to be held in common by the Nature Writers and scientists in this study and could form the foundation for an essential ethic for teaching science. The strongest dissonance between Nature Writers and scientists was evident in emotional and spiritual domains--despite that many scientists revealed emotional and spiritual elements in stories told of their experiences with nature. Contrary to what might have been

  14. Transnational organizational considerations for sociocultural differences in ethics and virtual team functioning in laboratory animal science.

    PubMed

    Pritt, Stacy L; Mackta, Jayne

    2010-05-01

    Business models for transnational organizations include linking different geographies through common codes of conduct, policies, and virtual teams. Global companies with laboratory animal science activities (whether outsourced or performed inhouse) often see the need for these business activities in relation to animal-based research and benefit from them. Global biomedical research organizations can learn how to better foster worldwide cooperation and teamwork by understanding and working with sociocultural differences in ethics and by knowing how to facilitate appropriate virtual team actions. Associated practices include implementing codes and policies transcend cultural, ethnic, or other boundaries and equipping virtual teams with the needed technology, support, and rewards to ensure timely and productive work that ultimately promotes good science and patient safety in drug development.

  15. Transnational organizational considerations for sociocultural differences in ethics and virtual team functioning in laboratory animal science.

    PubMed

    Pritt, Stacy L; Mackta, Jayne

    2010-05-01

    Business models for transnational organizations include linking different geographies through common codes of conduct, policies, and virtual teams. Global companies with laboratory animal science activities (whether outsourced or performed inhouse) often see the need for these business activities in relation to animal-based research and benefit from them. Global biomedical research organizations can learn how to better foster worldwide cooperation and teamwork by understanding and working with sociocultural differences in ethics and by knowing how to facilitate appropriate virtual team actions. Associated practices include implementing codes and policies transcend cultural, ethnic, or other boundaries and equipping virtual teams with the needed technology, support, and rewards to ensure timely and productive work that ultimately promotes good science and patient safety in drug development. PMID:20587155

  16. The medical theory of Richard Koch I: theory of science and ethics.

    PubMed

    Töpfer, F; Wiesing, U

    2005-01-01

    Richard Koch first made his appearance in the 1920s with works published on the foundations of medicine. These publications describe the character of medicine as an action and the status of medicine within the theory of science. One of his conclusions is that medicine is not a science in the original sense of the word, but a practical discipline. It serves a practical purpose: to heal the sick. All medical knowledge is oriented towards this purpose, which also defines the physician's role. One kind of knowledge is diagnosis, which is strictly understood in relation to therapy, and is at the core of medical thinking. Diagnosis is not the assignment of a term of a species to a patient's disease: this would not do justice to the individuality of a clinical manifestation and would fail to provide a reason for individual therapy. Nevertheless, the terms assigned to diseases, although fictitious, are not useless, but assist in differentiating various phenomena. These conclusions carry ethical consequences. Because the task of helping the sick constitutes medicine, morals not only set ethical limits: medicine originates in a moral decision. If there are no diseases but only individual sick people, disease can not be defined as an abnormality. The individual benefit to the patient must not necessarily be the complete restoration of health. With its object being incalculable, medicine cannot guarantee its own success. Here the physician has to develop principles that allow for the best possible response to the challenges faced in varying situations of conduct.

  17. [When science becomes technology: epistemological and ethical consequences of the Adduction].

    PubMed

    Cugini, P

    2015-01-01

    Notwithstanding that the sciences are every day closest to technology, the Philosophy of Science has not yet well realized the epistemological and ethical differences that make different the "Traditional Naturalistic Science" (TNS) and the technological, artefactual, intrusive science that I called: "Post-Modern Meta-Naturalistic Science" (P-MM-NS). The first type of science has as a primary scope the knowledge of nature, using a methodology that departs from the methodic doubt, realizes a hypothesis, defines the aim(s), adopts a protocol, interprets and discusses the results, inferentially derives the conclusions, according to the classical philosophical reasonings of induction, deduction, abduction. In my philosophical reasoning, I realized that P-MM-NS follows an absolutely different epistemological procedure. The technological science prefigures a scope, produces a non-natural technically-modified object, gives for sure the occurrence of the effect for which the object has been manufactured. This means that only "in retrospect" it will ascertain whether or not the promised effect has occurred, considering that any technical artifact could be rejected by that natural environment in which it has been, acritically, delivered, without knowing how to remedy in case of an unexpected effect. In such a circumstance, the technological science has totally failed in its scope and effect, The potential failure of the predicted effect will prove that P-MM-NS follows a logical reasoning that is substantially and formally "sui generis" with respect to the epistemology and ethics of NS. This divergence from the classic reasoning of induction, deduction, abduction, has been called by me: "Adduction", because of the following considerations: the scientific procedure doesn't depart from the methodic doubt and hypothesis, only declares a scope, for which it is produced a technically-manufactured object, and gives for sure which will be the expected effect, but, not knowing how to

  18. When the science fails and the ethics works: 'Fail-safe' ethics in the FEM-PrEP study.

    PubMed

    Kingori, Patricia

    2015-12-01

    This paper will explore the concept of 'fail safe' ethics in the FEM PrEP trial, and the practice of research and ethics on the ground. FEM-PrEP examined the efficacy of PrEP in African women after promising outcomes in research conducted with MSM. This was a hugely optimistic time and FEM-PrEP was mobilised using rights-based ethical arguments that women should have access to PrEP. This paper will present data collected during an ethnographic study of frontline research workers involved in FEM-PrEP. During our discussions, 'fail-safe' ethics emerged as concept that encapsulated their confidence that their ethics could not fail. However, in 2011, FEM-PrEP was halted and deemed a failure. The women involved in the study were held responsible because contrary to researcher's expectations they were not taking the oral PrEP being researched. This examination of FEM-PrEP will show that ethical arguments are increasingly deployed to mobilise, maintain and in some cases stop trials in ways which, at times, are superseded or co-opted by other interests. While promoting the interests of women, rights-based approaches are argued to indirectly justify the continuation of individualised, biomedical interventions which have been problematic in other women-centred trials. In this examination of FEM-PrEP, the rights-based approach obscured: ethical concerns beyond access to PrEP; the complexities of power relationships between donor and host countries; the operations of the HIV industry in research-saturated areas and the cumulative effect of unfilled expectations in HIV research and how this has shaped ideas of research and ethics.

  19. [Ethics in medical journals.

    PubMed

    Lifshitz, Alberto

    2013-01-01

    The title of this reflection evokes several contents that may encompass from ethics in research; fraud in science; ethics in medical advertising and relations between sponsors and science; and, finally, papers related to ethic content. This paper is limited to the ethic responsibilities of the medical writers or "scriptwriters."

  20. An evaluation of the Ethical, Legal and Social Implications program of the U.S. Human Genome Project.

    PubMed

    Jin, J

    2000-01-01

    The Ethical, Legal, and Social Implications (ELSI) program is an in-house evaluation program for the United States Human Genome Project. Understanding the ethical and moral implications of genetic information and technology is crucial towards ensuring the proper use of genetic data. The ELSI programs have had a positive influence in understanding problematic areas surrounding the HGP by acting as a center for discussion for many bioethicists and scientists. However, ELSI is often too passive and does not provide enough practical guidance to the public on the complex implications of the HGP. As it stands now, there is room for major improvement such as increased cooperation between ELSI and non-government organizations. NGO's would serve as bridges between ELSI and the public, and a collaboration would enable in-depth probing and more comprehensive analysis of issues of public concern.

  1. Large-Scale Sequencing: The Future of Genomic Sciences Colloquium

    SciTech Connect

    Margaret Riley; Merry Buckley

    2009-01-01

    by other experimental data, particularly transcriptomics and metabolomics data, all of which should be gathered and curated continuously. Systematic genomics efforts like the ones outlined in this document would significantly broaden our view of biological diversity and have major effects on science. This has to be backed up with examples. Considering these potential impacts and the need for acquiescence from both the public and scientists to get such projects funded and functioning, education and training will be crucial. New collaborations within the scientific community will also be necessary.

  2. The use of ethical frameworks by students following a new science course for 16 18 year-olds

    NASA Astrophysics Data System (ADS)

    Reiss, Michael

    2008-09-01

    There has been a move in recent years towards the greater inclusion of social and ethical issues within science courses. This paper examines a new context-based course for 16 18 year-olds (Salters-Nuffield Advanced Biology) who are studying biology in England and Wales. The course is taught through contexts and has an emphasis on social issues and the development of ethical reasoning. Examination of a sample of reports written by students in 2005 as part of the course’s summative assessment shows that utilitarian ethical reasoning is used widely and that the other ethical frameworks to which students are introduced in the course—rights and duties, autonomy and virtue ethics—are used substantially less often. In addition, students mostly argue anthropocentrically though many of them argue ecocentrically and/or biocentrically too.

  3. The role of genomics in conservation and reproductive sciences.

    PubMed

    Johnson, Warren E; Koepfli, Klaus

    2014-01-01

    Genomics, the study of an organism's genome through DNA analyses, is a central part of the biological sciences and is rapidly changing approaches to animal conservation. The genomes of thousands of organisms, including vertebrates, invertebrates, and plants have been sequenced and the results annotated, augmented and refined through the application of new approaches in transcriptomics, proteomics, and metabolomics that enhance the characterization of messenger RNA, proteins, and metabolites. The same computational advances that are catalyzing "-omic" technologies and novel approaches to address fundamental research questions are facilitating bioinformatic analysis and enabling access of primary and derivative data and results in public and private databases (Zhao and Grant. Curr Pharm Biotechnol 12:293-305, 2011). These tools will be used to provide fundamental advances in our understanding of reproductive biology across vertebrate species and promise to revolutionize our approach to conservation biology.The vulnerability of animal populations and their genetic diversity is well documented, as are the myriad of causes and threats to their persistence, including habitat degradation and loss, overexploitation, pollution, invasive alien species, and climate change. Of the 64,283 vertebrates assessed by the International Union for Conservation of Nature in their 2012 Red List of Threatened Species, 7,250 or ~11 % are threatened with extinction, a percentage that has been increasing steadily for at least the last decade ( www.iucnredlist.org ). Among many of these species, important genetic diversity has been lost, thereby increasing their vulnerability as genetically diverse populations have higher fitness, generally are more resilient to environmental challenges, and have more adaptive potential (Reed and Frankham Conserv Biol 17:230-237, 2003; Luikart et al. Nat Rev Genet 4:981-994, 2003). In turn, genetic variation within and among populations may be essential to

  4. The role of genomics in conservation and reproductive sciences.

    PubMed

    Johnson, Warren E; Koepfli, Klaus

    2014-01-01

    Genomics, the study of an organism's genome through DNA analyses, is a central part of the biological sciences and is rapidly changing approaches to animal conservation. The genomes of thousands of organisms, including vertebrates, invertebrates, and plants have been sequenced and the results annotated, augmented and refined through the application of new approaches in transcriptomics, proteomics, and metabolomics that enhance the characterization of messenger RNA, proteins, and metabolites. The same computational advances that are catalyzing "-omic" technologies and novel approaches to address fundamental research questions are facilitating bioinformatic analysis and enabling access of primary and derivative data and results in public and private databases (Zhao and Grant. Curr Pharm Biotechnol 12:293-305, 2011). These tools will be used to provide fundamental advances in our understanding of reproductive biology across vertebrate species and promise to revolutionize our approach to conservation biology.The vulnerability of animal populations and their genetic diversity is well documented, as are the myriad of causes and threats to their persistence, including habitat degradation and loss, overexploitation, pollution, invasive alien species, and climate change. Of the 64,283 vertebrates assessed by the International Union for Conservation of Nature in their 2012 Red List of Threatened Species, 7,250 or ~11 % are threatened with extinction, a percentage that has been increasing steadily for at least the last decade ( www.iucnredlist.org ). Among many of these species, important genetic diversity has been lost, thereby increasing their vulnerability as genetically diverse populations have higher fitness, generally are more resilient to environmental challenges, and have more adaptive potential (Reed and Frankham Conserv Biol 17:230-237, 2003; Luikart et al. Nat Rev Genet 4:981-994, 2003). In turn, genetic variation within and among populations may be essential to

  5. Human genome and philosophy: what ethical challenge will human genome studies bring to the medical practices in the 21st century?

    PubMed

    Renzong, Q

    2001-12-01

    A human being or person cannot be reduced to a set of human genes, or human genome. Genetic essentialism is wrong, because as a person the entity should have self-conscious and social interaction capacity which is grown in an interpersonal relationship. Genetic determinism is wrong too, the relationship between a gene and a trait is not a linear model of causation, but rather a non-linear one. Human genome is a complexity system and functions in a complexity system of human body and a complexity of systems of natural/social environment. Genetic determinism also caused the issue of how much responsibility an agent should take for her/his action, and how much degrees of freedom will a human being have. Human genome research caused several conceptual issues. Can we call a gene 'good' or 'bad', 'superior' of 'inferior'? Is a boy who is detected to have the gene of Huntington's chorea or Alzheimer disease a patient? What should the term 'eugenics' mean? What do the terms such as 'gene therapy', 'treatment' and 'enhancement' and 'human cloning' mean etc.? The research of human genome and its application caused and will cause ethical issues. Can human genome research and its application be used for eugenics, or only for the treatment and prevention of diseases? Must the principle of informed consent/choice be insisted in human genome research and its application? How to protecting gene privacy and combating the discrimination on the basis of genes? How to promote the quality between persons, harmony between ethnic groups and peace between countries? How to establish a fair, just, equal and equitable relationship between developing and developed countries in regarding to human genome research and its application?

  6. Social and Ethical Dimension of the Natural Sciences, Complex Problems of the Age, Interdisciplinarity, and the Contribution of Education

    ERIC Educational Resources Information Center

    Develaki, Maria

    2008-01-01

    In view of the complex problems of this age, the question of the socio-ethical dimension of science acquires particular importance. We approach this matter from a philosophical and sociological standpoint, looking at such focal concerns as the motivation, purposes and methods of scientific activity, the ambivalence of scientific research and the…

  7. The Use of Ethical Frameworks by Students Following a New Science Course for 16-18 Year-Olds

    ERIC Educational Resources Information Center

    Reiss, Michael

    2008-01-01

    There has been a move in recent years towards the greater inclusion of social and ethical issues within science courses. This paper examines a new context-based course for 16-18 year-olds (Salters-Nuffield Advanced Biology) who are studying biology in England and Wales. The course is taught through contexts and has an emphasis on social issues and…

  8. Investigation of Environmental Topics in the Science and Technology Curriculum and Textbooks in Terms of Environmental Ethics and Aesthetics

    ERIC Educational Resources Information Center

    Lacin Simsek, Canan

    2011-01-01

    In order to solve environmental problems, it is thought that education should be connected with values. For this reason, it is emphasized that environmental issues should be integrated with ethical and aesthetic values. In this study, 6th, 7th and 8th grade science and technology curriculum and textbooks were investigated to find out how much…

  9. A historical, clinical, and ethical overview of the emerging science of facial transplantation.

    PubMed

    Evans, Linda A

    2011-01-01

    In the past 5 years, a total of 16 facial transplantation surgeries have been performed in France, China, Spain, and the United States. Facial transplantation has become a surgical option in clinical situations in which soft tissue and bone loss is accompanied by severe cosmetic, sensory, and functional deficiencies due to disease, trauma, or congenital malformations. With the introduction of facial tissue transplantation surgery came complex clinical, technological, and ethical patient care issues. These complex issues included determining patient selection criteria, refining donor tissue procurement techniques, predicting expected functional outcomes, appreciating the limitations of obtaining a fully informed consent for an innovative procedure, and deliberating the immunological response and postoperative immunosuppressant requirements of the recipient. In addition, psychological implications for the patient, societal consequences, and ethical concerns have been discussed. The short-term results have been positive. Results to date indicate that the clinical, technical, and immunological patient care issues in this emerging science appear to mirror those of other reconstructive and organ transplantation procedures. The long-term physical, emotional, and psychological effects on the recipient patient, as well as long-term consequences to the donor's family, are yet to be validated. PMID:22157604

  10. Becoming a Science Teacher: Moving toward Creolized Science and an Ethic of Cosmopolitanism

    ERIC Educational Resources Information Center

    Seiler, Gale

    2011-01-01

    Although communities and schools in North America are increasingly diverse and positioned in a global web, schools continue to adhere to Western norms and the teacher workforce remains largely White, continuing an ideology of collective sameness and conformity. Hybridization of teacher identity and of science teaching are suggested as ways to…

  11. The ethics of translating high-throughput science into clinical practice.

    PubMed

    Ossorio, Pilar N

    2014-09-01

    Biomedical research is increasingly data intensive and computational, and "big data science" is migrating into the clinical arena. Unfortunately, ethicists, regulators, and policy-makers have barely begun to explore the ethical, legal, and social issues raised by the variety of analytical and computational approaches in use and under development in biology and medicine. Most scholarship concerning big data bioscience has focused on privacy, a vitally important consideration but not the only one. Among the issues raised by new computational technologies are questions about safety and safety assessment, justice, and how to obtain proper informed consent. These technologies also raise a myriad of regulatory issues that could influence the probability of translating new assays or computational tools to the clinical or public health spheres. PMID:25231655

  12. The science and ethics of making part-human animals in stem cell biology.

    PubMed

    Robert, Jason Scott

    2006-05-01

    The National Academy of Sciences recently issued voluntary guidelines to govern human embryonic stem cell research. Among other restrictions, these guidelines prohibit certain kinds of combinations of human and nonhuman animal cells, and call for ethics review and oversight of any protocol involving the transfer of human embryonic stem cells into nonhuman animals. In this essay, I discuss the history of and scientific rationales for combining human cells with cells of nonhuman animals, and critically assess the most recent attempts to limit such research on moral grounds--and find them lacking. Nonetheless, as I show, this research remains scientifically and morally contested. I then explore whether and how the NAS's recommended Embryonic Stem Cell Research and Oversight committees will allow for scientifically well-informed moral assessment of this controversial, but possibly important, research.

  13. Facebook as a research tool for the social sciences: Opportunities, challenges, ethical considerations, and practical guidelines.

    PubMed

    Kosinski, Michal; Matz, Sandra C; Gosling, Samuel D; Popov, Vesselin; Stillwell, David

    2015-09-01

    Facebook is rapidly gaining recognition as a powerful research tool for the social sciences. It constitutes a large and diverse pool of participants, who can be selectively recruited for both online and offline studies. Additionally, it facilitates data collection by storing detailed records of its users' demographic profiles, social interactions, and behaviors. With participants' consent, these data can be recorded retrospectively in a convenient, accurate, and inexpensive way. Based on our experience in designing, implementing, and maintaining multiple Facebook-based psychological studies that attracted over 10 million participants, we demonstrate how to recruit participants using Facebook, incentivize them effectively, and maximize their engagement. We also outline the most important opportunities and challenges associated with using Facebook for research, provide several practical guidelines on how to successfully implement studies on Facebook, and finally, discuss ethical considerations. PMID:26348336

  14. The ethics of translating high-throughput science into clinical practice.

    PubMed

    Ossorio, Pilar N

    2014-09-01

    Biomedical research is increasingly data intensive and computational, and "big data science" is migrating into the clinical arena. Unfortunately, ethicists, regulators, and policy-makers have barely begun to explore the ethical, legal, and social issues raised by the variety of analytical and computational approaches in use and under development in biology and medicine. Most scholarship concerning big data bioscience has focused on privacy, a vitally important consideration but not the only one. Among the issues raised by new computational technologies are questions about safety and safety assessment, justice, and how to obtain proper informed consent. These technologies also raise a myriad of regulatory issues that could influence the probability of translating new assays or computational tools to the clinical or public health spheres.

  15. Facebook as a research tool for the social sciences: Opportunities, challenges, ethical considerations, and practical guidelines.

    PubMed

    Kosinski, Michal; Matz, Sandra C; Gosling, Samuel D; Popov, Vesselin; Stillwell, David

    2015-09-01

    Facebook is rapidly gaining recognition as a powerful research tool for the social sciences. It constitutes a large and diverse pool of participants, who can be selectively recruited for both online and offline studies. Additionally, it facilitates data collection by storing detailed records of its users' demographic profiles, social interactions, and behaviors. With participants' consent, these data can be recorded retrospectively in a convenient, accurate, and inexpensive way. Based on our experience in designing, implementing, and maintaining multiple Facebook-based psychological studies that attracted over 10 million participants, we demonstrate how to recruit participants using Facebook, incentivize them effectively, and maximize their engagement. We also outline the most important opportunities and challenges associated with using Facebook for research, provide several practical guidelines on how to successfully implement studies on Facebook, and finally, discuss ethical considerations.

  16. "Concepts in animal welfare": a syllabus in animal welfare science and ethics for veterinary schools.

    PubMed

    de Boo, Jasmijn; Knight, Andrew

    2005-01-01

    Public attitudes toward animal welfare have improved with growing social affluence, and veterinarians are increasingly expected to be informed about animal welfare in a broader sense than health alone. However, animal welfare has not been a traditional component of the veterinary curriculum. To help address this lack, the World Society for the Protection of Animals(WSPA) and the University of Bristol School of Veterinary Science launched the ''Concepts in Animal Welfare'' syllabus in 2003. This comprehensive syllabus comprises seven core and 23 elective modules and covers a range of animal welfare issues, including farm and companion animal welfare, wildlife, and the use of animals in experiments. There are also modules on ethics and animal legislation. The syllabus is interactive, promotes critical analysis of issues from different angles, and may be adapted for use in any veterinary curriculum. WSPA provides training and workshops in developing countries and assists with the implementation of the syllabus.

  17. Ethics and genomic medicine, how to navigate decisions in surgical oncology.

    PubMed

    Devon, Karen M; Lerner-Ellis, Jordan P; Ganai, Sabha; Angelos, Peter

    2015-01-01

    Using genetic information to make medical decisions and tailor treatments to individuals will likely provide major benefits and become an important part of health care. Surgical oncologists must ethically apply scientific genetic information in a complex and evolving environment to the benefit of their patients. In this review we address ethical issues associated with: indications for genetic testing, informed consent for testing and therapy, confidentiality, targeted therapy, prophylactic surgery, and genetic testing in children.

  18. Publishing Ethics and Predatory Practices: A Dilemma for All Stakeholders of Science Communication

    PubMed Central

    Yessirkepov, Marlen; Diyanova, Svetlana N.; Kitas, George D.

    2015-01-01

    Publishing scholarly articles in traditional and newly-launched journals is a responsible task, requiring diligence from authors, reviewers, editors, and publishers. The current generation of scientific authors has ample opportunities for publicizing their research. However, they have to selectively target journals and publish in compliance with the established norms of publishing ethics. Over the past few years, numerous illegitimate or predatory journals have emerged in most fields of science. By exploiting gold Open Access publishing, these journals paved the way for low-quality articles that threatened to change the landscape of evidence-based science. Authors, reviewers, editors, established publishers, and learned associations should be informed about predatory publishing practices and contribute to the trustworthiness of scholarly publications. In line with this, there have been several attempts to distinguish legitimate and illegitimate journals by blacklisting unethical journals (the Jeffrey Beall's list), issuing a statement on transparency and best publishing practices (the Open Access Scholarly Publishers Association's and other global organizations' draft document), and tightening the indexing criteria by the Directory of Open Access Journals. None of these measures alone turned to be sufficient. All stakeholders of science communication should be aware of multiple facets of unethical practices and publish well-checked and evidence-based articles. PMID:26240476

  19. Publishing Ethics and Predatory Practices: A Dilemma for All Stakeholders of Science Communication.

    PubMed

    Gasparyan, Armen Yuri; Yessirkepov, Marlen; Diyanova, Svetlana N; Kitas, George D

    2015-08-01

    Publishing scholarly articles in traditional and newly-launched journals is a responsible task, requiring diligence from authors, reviewers, editors, and publishers. The current generation of scientific authors has ample opportunities for publicizing their research. However, they have to selectively target journals and publish in compliance with the established norms of publishing ethics. Over the past few years, numerous illegitimate or predatory journals have emerged in most fields of science. By exploiting gold Open Access publishing, these journals paved the way for low-quality articles that threatened to change the landscape of evidence-based science. Authors, reviewers, editors, established publishers, and learned associations should be informed about predatory publishing practices and contribute to the trustworthiness of scholarly publications. In line with this, there have been several attempts to distinguish legitimate and illegitimate journals by blacklisting unethical journals (the Jeffrey Beall's list), issuing a statement on transparency and best publishing practices (the Open Access Scholarly Publishers Association's and other global organizations' draft document), and tightening the indexing criteria by the Directory of Open Access Journals. None of these measures alone turned to be sufficient. All stakeholders of science communication should be aware of multiple facets of unethical practices and publish well-checked and evidence-based articles.

  20. Publishing Ethics and Predatory Practices: A Dilemma for All Stakeholders of Science Communication.

    PubMed

    Gasparyan, Armen Yuri; Yessirkepov, Marlen; Diyanova, Svetlana N; Kitas, George D

    2015-08-01

    Publishing scholarly articles in traditional and newly-launched journals is a responsible task, requiring diligence from authors, reviewers, editors, and publishers. The current generation of scientific authors has ample opportunities for publicizing their research. However, they have to selectively target journals and publish in compliance with the established norms of publishing ethics. Over the past few years, numerous illegitimate or predatory journals have emerged in most fields of science. By exploiting gold Open Access publishing, these journals paved the way for low-quality articles that threatened to change the landscape of evidence-based science. Authors, reviewers, editors, established publishers, and learned associations should be informed about predatory publishing practices and contribute to the trustworthiness of scholarly publications. In line with this, there have been several attempts to distinguish legitimate and illegitimate journals by blacklisting unethical journals (the Jeffrey Beall's list), issuing a statement on transparency and best publishing practices (the Open Access Scholarly Publishers Association's and other global organizations' draft document), and tightening the indexing criteria by the Directory of Open Access Journals. None of these measures alone turned to be sufficient. All stakeholders of science communication should be aware of multiple facets of unethical practices and publish well-checked and evidence-based articles. PMID:26240476

  1. A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research

    PubMed Central

    2014-01-01

    Background The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines. Discussion The first challenge we identified relates to the moral status of cells living in culture. There is no doubt that cells in culture are alive, and the question is how this characteristic is relevant to ethical decision-making. The second challenge relates to the fact that cells in culture are a source of cell products and mitochondrial DNA. In combination with other technologies, cells in culture could also be used to grow human tissue. Whilst on the one hand, this feature increases the potential utility of the sample and promotes science, on the other it also enables further scientific work that may not have been specifically consented to or approved. The third challenge relates to ownership over samples, particularly in cases where cell lines are created by a biobank, and in a different country than where samples were collected. Relevant questions here concern the export of samples, approval of secondary use and the acceptability of commercialisation. A fourth challenge relates to perceptions of blood and bodily integrity, which may be particularly relevant for African research participants from certain cultures or backgrounds. Finally, we discuss challenges around informed consent and ethical review. Summary In this paper, we sought to map the myriad of ethical challenges that need to be considered prior to making cell line creation a reality in the H3Africa project. Considering the relative novelty of this practice in Africa, such challenges will need to be considered, discussed and potentially be resolved before cell line creation in Africa becomes

  2. Research ethics, science policy, and four contexts for the stem cell debate.

    PubMed

    de S Cameron, Nigel M

    2006-01-01

    There are plainly conscientious differences of opinion among scientists, politicians, and the public in respect of both the ethics of embryonic stem cell research and the more general question of the role of public policy in setting parameters for what is legal and what is funded in the biosciences. Although professional discussion of embryonic stem cell research is not hampered by the often misleading oversimplifications of the press, it remains true that the wide range of ethical options is rarely explored. These varied positions arise from a series of at least six logically distinct policy options, which we may summarize in these terms: (a) All use of human embryos for research is wrong. (b) Excess in vitro embryos may be used, but others should not be created for the purpose. (c) In vitro embryos, but not clonal embryos, may be created with the intent of using them for research. (d) Clonal embryos, but not in vitro embryos, may be created with the intent of using them for research. (e) Only certain excess embryos destroyed before a certain date should be used. (f) Only certain excess embryos created before a certain date should be used. Moreover, in any policy permitting research use of the embryo, two further sets of issues are raised. First is the question of consent. Second is the question of time limits. As advancements in biotechnology shape the possibilities of the twenty-first century and hold out both promise and threat to the human future, it is crucial that we develop a national and global conversation that both encourages science and its potential and takes wider social responsibility for the purposes for which science is engaged.

  3. Ethics Hype?

    PubMed

    Caulfield, Timothy

    2016-09-01

    There has been growing concern about the phenomenon of science hype, the tendency to exaggerate the value or near-future application of research results. Although this is a problem that touches every area of biomedicine, the topic of genetics seems to be particularly prone to enthusiastic predictions. The world has been told for over two decades-by the media, researchers, politicians, and the biotech industry-that a genome-driven health care revolution is just around the corner. And while the revolution never seems to arrive, the hopeful rhetoric continues. It has been suggested that this unrelenting "genohype" is having a range of adverse social consequences, including misleading the public and hurting the long-term legitimacy of the field. While we need more good data on the nature and magnitude of these possible harms, few would argue with the proposition that sustained science hype is a bad thing. We all benefit from robust science and accurate public representations of biomedical research. But, to date, there has been very little consideration of the degree to which the scholarship on the related ethical, legal, and social issues has been hyped. Are the conclusions from ELSI scholarship also exaggerated? PMID:27649824

  4. Ethical issues surrounding the use of images from donated cadavers in the anatomical sciences.

    PubMed

    Cornwall, Jon; Callahan, David; Wee, Richman

    2016-01-01

    Body donor programs rely on the generosity and trust of the public to facilitate the provision of cadaver resources for anatomical education and research. The uptake and adoption of emerging technologies, including those allowing the acquisition and distribution of images, are becoming more widespread, including within anatomical science education. Images of cadavers are useful for research and education, and their supply and distribution have commercial potential for textbooks and online education. It is unclear whether the utilization of images of donated cadavers are congruent with donor expectations, societal norms and boundaries of established public understanding. Presently, no global "best practices" or standards exist, nor is there a common model requiring specific image-related consent from body donors. As ongoing success of body donation programs relies upon the ethical and institutional governance of body utilization to maintain trust and a positive relationship with potential donors and the community, discussions considering the potential impact of image misuse are important. This paper discusses the subject of images of donated cadavers, commenting on images in non-specific use, education, research, and commercial applications. It explores the role and significance of such images in the context of anatomical science and society, and discusses how misuse - including unconsented use - of images has the potential to affect donor program success, suggesting that informed consent is currently necessary for all images arising from donated cadavers. Its purpose is to encourage discussion to guide responsible utilization of cadaver images, while protecting the interests of body donors and the public.

  5. Ethical issues surrounding the use of images from donated cadavers in the anatomical sciences.

    PubMed

    Cornwall, Jon; Callahan, David; Wee, Richman

    2016-01-01

    Body donor programs rely on the generosity and trust of the public to facilitate the provision of cadaver resources for anatomical education and research. The uptake and adoption of emerging technologies, including those allowing the acquisition and distribution of images, are becoming more widespread, including within anatomical science education. Images of cadavers are useful for research and education, and their supply and distribution have commercial potential for textbooks and online education. It is unclear whether the utilization of images of donated cadavers are congruent with donor expectations, societal norms and boundaries of established public understanding. Presently, no global "best practices" or standards exist, nor is there a common model requiring specific image-related consent from body donors. As ongoing success of body donation programs relies upon the ethical and institutional governance of body utilization to maintain trust and a positive relationship with potential donors and the community, discussions considering the potential impact of image misuse are important. This paper discusses the subject of images of donated cadavers, commenting on images in non-specific use, education, research, and commercial applications. It explores the role and significance of such images in the context of anatomical science and society, and discusses how misuse - including unconsented use - of images has the potential to affect donor program success, suggesting that informed consent is currently necessary for all images arising from donated cadavers. Its purpose is to encourage discussion to guide responsible utilization of cadaver images, while protecting the interests of body donors and the public. PMID:26474731

  6. Genome Science: A Video Tour of the Washington University Genome Sequencing Center for High School and Undergraduate Students

    PubMed Central

    2005-01-01

    Sequencing of the human genome has ushered in a new era of biology. The technologies developed to facilitate the sequencing of the human genome are now being applied to the sequencing of other genomes. In 2004, a partnership was formed between Washington University School of Medicine Genome Sequencing Center's Outreach Program and Washington University Department of Biology Science Outreach to create a video tour depicting the processes involved in large-scale sequencing. “Sequencing a Genome: Inside the Washington University Genome Sequencing Center” is a tour of the laboratory that follows the steps in the sequencing pipeline, interspersed with animated explanations of the scientific procedures used at the facility. Accompanying interviews with the staff illustrate different entry levels for a career in genome science. This video project serves as an example of how research and academic institutions can provide teachers and students with access and exposure to innovative technologies at the forefront of biomedical research. Initial feedback on the video from undergraduate students, high school teachers, and high school students provides suggestions for use of this video in a classroom setting to supplement present curricula. PMID:16341256

  7. The Ethical Implications of Cultural Intervention by Space-faring Civilizations -- What Science Fiction Has to Say

    NASA Astrophysics Data System (ADS)

    Ciupa, M.

    Science fiction (Scifi) plays out the concerns of our possible scientistic futures; it is a source for exploring the deep rooted psychological concerns of mankind with science and the humanities. In this paper it is proposed Scifi is a valid source of hypotheses to examine, not as "evidence", but as candidate ­ often cautionary ­ notions, i.e., scenarios to be studied. Scifi represents a kind of Jungian mythological based story-telling, putting forward tales that express our conscious/unconscious concerns. Thus, when looking into ethical questions like, "where will techno-progressive futures take us?", we import into them these archetypes, hopes and fears, as a result they frequently reappear as familiar tropes. In this respect it is appropriate not to ignore them, but to openly challenge/appreciate them: to see what scenarios are indeed likely and how they may impact us reciprocally. This paper examines some of these aspects, and provides examples of how they are represented in the Scifi genre, in particular with consideration of the ethical implications of cultural intervention by space-faring civilizations. Given the specific analysis/examples provided, it concludes with an ethical scenario analysis (a dialectic argument), within the limiting conditions of the Drake Equation, Fermi Paradox and Cultural History. It comments on the potential existential risk of the Active SETI programmes recently initiated, indeed the need for an ethical exosociological review of all proposed Interstellar projects that express an "Intervention-Propensity".

  8. Engineering Practice and Engineering Ethics.

    ERIC Educational Resources Information Center

    Lynch, William T.; Kline, Ronald

    2000-01-01

    Offers ways of applying science and technology studies to the teaching of engineering ethics. Suggests modifications of both detailed case studies on engineering disasters and hypothetical, ethical dilemmas employed in engineering ethics classes. (Author/CCM)

  9. [Ethical and legal principles for the activities of bioprospection in relation to human beings and the human genome].

    PubMed

    Romeo Casabona, Carlos María

    2012-01-01

    During recent decades, bioprospecting has become an important field of research, which looks for development alternatives, entry into global (environmental) markets, and the subsequent obtention of benefits under sustainable development principles. However, there is still so much to discuss regarding the social and environmental impacts produced by this activity, as well as its main limitations. To this end, the Forum/round-table discussion, entitled "Bioprospección, Etica y Sociedad" was organised to take place on 28 March 2012 at the National University of Colombia. Its main objective was to enrich our knowledge on bioprospecting considering the ethical considerations that involve society. The presentation given by Professor ROMEO CASABONA, regarding the connection between bioprospecting and the human genome deserves special attention and is presented below.

  10. Good and Bad Research Collaborations: Researchers’ Views on Science and Ethics in Global Health Research

    PubMed Central

    Parker, Michael; Kingori, Patricia

    2016-01-01

    There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors as important to successful research collaboration. This is surprising given that their decisions are likely to play a key role in the sustainability and effectiveness of global health research initiatives. In this paper, we report on qualitative research with leading scientists involved in major international research collaborations about their views on good and bad collaborations and the factors that inform their decision-making about joining and participating actively in research networks. We identify and discuss eight factors that researchers see as essential in judging the merits of active participation in global health research collaborations: opportunities for active involvement in cutting-edge, interesting science; effective leadership; competence of potential partners in and commitment to good scientific practice; capacity building; respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. Our findings suggest that the sustainability and effectiveness of global health research collaborations has an important ethical or moral dimension for the research actors involved. PMID:27737006

  11. Developmental logics: Brain science, child welfare, and the ethics of engagement in Japan.

    PubMed

    Goldfarb, Kathryn E

    2015-10-01

    This article explores the unintended consequences of the ways scholars and activists take up the science of child development to critique the Japanese child welfare system. Since World War II, Japan has depended on a system of child welfare institutions (baby homes and children's homes) to care for state wards. Opponents of institutional care advocate instead for family foster care and adoption, and cite international research on the developmental harms of institutionalizing newborns and young children during the "critical period" of the first few years. The "critical period" is understood as the time during which the caregiving a child receives shapes neurological development and later capacity to build interpersonal relationships. These discourses appear to press compellingly for system reform, the proof resting on seemingly objective knowledge about child development. However, scientific evidence of harm is often mobilized in tandem with arguments that the welfare system is rooted in Japanese culture, suggesting durability and resistance to change. Further, reform efforts that use universalizing child science as "proof" of the need for change are prone to slip into deterministic language that pathologizes the experiences of people who grew up in the system. This article explores the reasons why deterministic models of child development, rather than more open-ended models like neuroplasticity, dominate activist rhetorics. It proposes a concept, "ethics of engagement," to advocate for attention to multiple scales and domains through which interpersonal ties are experienced and embodied over time. Finally, it suggests the possibility of child welfare reform movements that take seriously the need for caring and transformative relationships throughout life, beyond the first "critical years," that do not require deterministic logics of permanent delay or damage. PMID:25530189

  12. Future Public Policy and Ethical Issues Facing the Agricultural and Microbial Genomics Sectors of the Biotechnology Industry: A Roundtable Discussion

    SciTech Connect

    Diane E. Hoffmann

    2003-09-12

    On September 12, 2003, the University of Maryland School of Law's Intellectual Property and Law & Health Care Programs jointly sponsored and convened a roundtable discussion on the future public policy and ethical issues that will likely face the agricultural and microbial genomics sectors of the biotechnology industry. As this industry has developed over the last two decades, societal concerns have moved from what were often local issues, e.g., the safety of laboratories where scientists conducted recombinant DNA research on transgenic microbes, animals and crops, to more global issues. These newer issues include intellectual property, international trade, risks of genetically engineered foods and microbes, bioterrorism, and marketing and labeling of new products sold worldwide. The fast paced nature of the biotechnology industry and its new developments often mean that legislators, regulators and society, in general, must play ''catch up'' in their efforts to understand the issues, the risks, and even the benefits, that may result from the industry's new ways of conducting research, new products, and novel methods of product marketing and distribution. The goal of the roundtable was to develop a short list of the most significant public policy and ethical issues that will emerge as a result of advances in these sectors of the biotechnology industry over the next five to six years. More concretely, by ''most significant'' the conveners meant the types of issues that would come to the attention of members of Congress or state legislators during this time frame and for which they would be better prepared if they had well researched and timely background information. A concomitant goal was to provide a set of focused issues for academic debate and scholarship so that policy makers, industry leaders and regulators would have the intellectual resources they need to better understand the issues and concerns at stake. The goal was not to provide answers to any of the

  13. Genetic testing and genomic analysis: a debate on ethical, social and legal issues in the Arab world with a focus on Qatar.

    PubMed

    El Shanti, Hatem; Chouchane, Lotfi; Badii, Ramin; Gallouzi, Imed Eddine; Gasparini, Paolo

    2015-11-14

    In 2013 both Saudi Arabia and Qatar launched genome projects with the aim of providing information for better diagnosis, treatment and prevention of diseases and, ultimately to realize personalized medicine by sequencing hundred thousands samples. These population based genome activities raise a series of relevant ethical, legal and social issues general, related to the specific population structure as well as to the Islamic perspective on genomic analysis and genetic testing. To contribute to the debate, the Authors after reviewing the existing literature and taking advantage of their professional experience in the field and in the geographic area, discuss and provide their opinions. In particular, the Authors focus on the impact of consanguinity on population structure and disease frequency in the Arab world, on genetic testing and genomic analysis (i.e. technical aspects, impact, etc.) and on their regulations. A comparison between the Islamic perspective and the ethical, social and legal issues raised in other population contexts is also carried. In conclusion, this opinion article with an up-to-date contribution to the discussion on the relevance and impact of genomic analysis and genetic testing in the Arab world, might help in producing specific national guidelines on genetic testing and genomic analysis and help accelerate the implementation and roll out of genome projects in Muslim countries and more specifically in Qatar, and other countries of the Gulf.

  14. Policy makers ignoring science and scientists ignoring policy: the medical ethical challenges of heroin treatment

    PubMed Central

    Small, Dan; Drucker, Ernest

    2006-01-01

    require patients who have been successfully treated with heroin in Canada, to be forced to move back to less effective treatments (treatments that failed to be efficacious in the past)? This essay discusses this dilemma and places it in the broader context of ethics, science, and health policy. It makes the case for continuation of the current successful patients in heroin treatment and the institution of heroin treatment to all Canadian patients living with active addictions who qualify. PMID:16670010

  15. Human Genome Teacher Networking Project, Final Report, April 1, 1992 - March 31, 1998

    SciTech Connect

    Collins, Debra

    1999-10-01

    Project to provide education regarding ethical legal and social implications of Human Genome Project to high school science teachers through two consecutive summer workshops, in class activities, and peer teaching workshops.

  16. Genome Island: A Virtual Science Environment in Second Life

    ERIC Educational Resources Information Center

    Clark, Mary Anne

    2009-01-01

    Mary Anne CLark describes the organization and uses of Genome Island, a virtual laboratory complex constructed in Second Life. Genome Island was created for teaching genetics to university undergraduates but also provides a public space where anyone interested in genetics can spend a few minutes, or a few hours, interacting with genetic…

  17. Genetically modified animals from life-science, socio-economic and ethical perspectives: examining issues in an EU policy context.

    PubMed

    Frewer, L J; Kleter, G A; Brennan, M; Coles, D; Fischer, A R H; Houdebine, L M; Mora, C; Millar, K; Salter, B

    2013-06-25

    The interdisciplinary EC consortium (the PEGASUS project) aimed to examine the issues raised by the development, implementation and commercialisation of genetically modified (GM) animals, and derivative foods and pharmaceutical products. The results integrated existing social (including existing public perception) environmental and economic knowledge regarding GM animals to formulate policy recommendations relevant to new developments and applications. The use of GM in farmed animals (aquatic, terrestrial and pharmaceutical) was mapped and reviewed. A foresight exercise was conducted to identity future developments. Three case studies (aquatic, terrestrial and pharmaceutical) were applied to identify the issues raised, including the potential risks and benefits of GM animals from the perspectives of the production chain (economics and agri-food sector) and the life sciences (human and animal health, environmental impact, animal welfare and sustainable production). Ethical and policy concerns were examined through application of combined ethical matrix method and policy workshops. The case studies were also used to demonstrate the utility of public engagement in the policy process. The results suggest that public perceptions, ethical issues, the competitiveness of EU animal production and risk-benefit assessments that consider human and animal health, environmental impact and sustainable production need to be considered in EU policy development. Few issues were raised with application in the pharmaceutical sector, assuming ethical and economic issues were addressed in policy, but the introduction of agricultural GM animal applications should be considered on a case-by-case basis.

  18. Embryonic stem cells in science and medicine, part II: law, ethics, and the continuing need for dialogue.

    PubMed

    Solomon, Louis M; Brockman-Lee, Sandra A

    2008-03-01

    Just as our first article, "Embryonic Stem Cells in Science and Medicine: An Invitation for Dialogue," in the December 2007 issue of Gender Medicine went to press, two groups of researchers had just announced that adult human somatic cells had been reprogrammed to behave like pluripotent stem cells, and that the reprogrammed cells were able to differentiate into cell types of the 3 germ layers in vitro and in a mouse model. A third group has since done so. Because the reprogrammed cells were not embryonic in origin, the announcements were heralded as "stunning" and "leaps forward," because, it was argued, the ability to generate stem cells, without destroying embryos in the process, would avoid the difficult ethical questions raised by human embryonic stem (hES) cell research. This article addresses the most recent announcements and briefly retraces the relevant history so that we may consider whether the moral, ethical, and social issues do in fact disappear as a result of these new advancements. We conclude that, despite the hoopla, little has changed. If indeed there were ethical issues surrounding hES cell research, they remain-and remain as urgent to address and resolve as they had been previously. Lastly, we argue that the medical and scientific communities continue to do themselves a disservice by failing to create a cohesive governing body to address and make concrete recommendations concerning the moral, ethical, and related social issues affecting their communities.

  19. The importance of formative assessment in science and engineering ethics education: some evidence and practical advice.

    PubMed

    Keefer, Matthew W; Wilson, Sara E; Dankowicz, Harry; Loui, Michael C

    2014-03-01

    Recent research in ethics education shows a potentially problematic variation in content, curricular materials, and instruction. While ethics instruction is now widespread, studies have identified significant variation in both the goals and methods of ethics education, leaving researchers to conclude that many approaches may be inappropriately paired with goals that are unachievable. This paper speaks to these concerns by demonstrating the importance of aligning classroom-based assessments to clear ethical learning objectives in order to help students and instructors track their progress toward meeting those objectives. Two studies at two different universities demonstrate the usefulness of classroom-based, formative assessments for improving the quality of students' case responses in computational modeling and research ethics.

  20. Learning about the Human Genome. Part 1: Challenge to Science Educators. ERIC Digest.

    ERIC Educational Resources Information Center

    Haury, David L.

    This digest explains how to inform high school students and their parents about the human genome project (HGP) and how the information from this milestone finding will affect future biological and medical research and challenge science educators. The sections include: (1) "The Emerging Legacy of the HGP"; (2) "Transforming How Science Is Done";…

  1. Ethical Implications of Seismic Risk Communication in Istanbul - Insights from a Transdisciplinary, Film-based Science Communication Workshop

    NASA Astrophysics Data System (ADS)

    Ickert, Johanna; Stewart, Iain S.

    2016-04-01

    For more than a decade, social science studies indicate that there is little or no correlation between the provision of scientific information about geohazards and risks and the adaptive changes in individual or community behaviour that would reduce risk. Bridging that gap to effectively convey hazard science 'the last mile' to those communities at risk raises a number of ethical issues about the role and responsibilities of geoscientists as communicators. Those issues emerge from a methodological shift away from the dominant interpretation of seismic risk communication as a transfer of scientific facts to "the public", towards more inclusive transdisciplinary communication strategies that incorporate peer-role models, adopt social network-based strategies and directly engage with communities in motivating preparedness actions. With this methodological shift comes ethical dilemmas. What are the target-groups that should be prioritised? What are the professional expectations and levels of personal engagement required of geo-communicators? How able and willing are geoscientists to include other forms of knowledge (e.g. from local communities or other disciplines)? What media formats can reconcile argumentative, informational "matters of fact" with sociocultural and psychological "matters of concern"? How should scientists react to political controversies related to risk mitigation and its communication? In the context of these ethical concerns, many geoscientist struggle to switch from conventional communication modes in which they are the technical 'experts' to more community-centered, participatory modes of public engagement. We examine this research question through a case study on seismic risk communication challenges in Istanbul, a megacity with one of the highest seismic vulnerabilities in the world. Currently, there are few formal mechanisms to facilitate interchange between academic geoscientists and the general public in Istanbul. In order to reduce the city

  2. Genomics and bioinformatics resources for translational science in Rosaceae.

    PubMed

    Jung, Sook; Main, Dorrie

    2014-01-01

    Recent technological advances in biology promise unprecedented opportunities for rapid and sustainable advancement of crop quality. Following this trend, the Rosaceae research community continues to generate large amounts of genomic, genetic and breeding data. These include annotated whole genome sequences, transcriptome and expression data, proteomic and metabolomic data, genotypic and phenotypic data, and genetic and physical maps. Analysis, storage, integration and dissemination of these data using bioinformatics tools and databases are essential to provide utility of the data for basic, translational and applied research. This review discusses the currently available genomics and bioinformatics resources for the Rosaceae family.

  3. Multimedia Presentations on the Human Genome: Implementation and Assessment of a Teaching Program for the Introduction to Genome Science Using a Poster and Animations

    ERIC Educational Resources Information Center

    Kano, Kei; Yahata, Saiko; Muroi, Kaori; Kawakami, Masahiro; Tomoda, Mari; Miyaki, Koichi; Nakayama, Takeo; Kosugi, Shinji; Kato, Kazuto

    2008-01-01

    Genome science, including topics such as gene recombination, cloning, genetic tests, and gene therapy, is now an established part of our daily lives; thus we need to learn genome science to better equip ourselves for the present day. Learning from topics directly related to the human has been suggested to be more effective than learning from…

  4. Legal, ethical, and conceptual bottlenecks to the development of useful genomic tests.

    PubMed

    Tomasson, Michael

    2009-01-01

    This article discusses advances in genomic research in the context of the debate surrounding gene patent rights and the limited rights of patient-participants in translational research. In addition, the author explores statutory and regulatory hurdles to advances in disease diagnosis, such the Bayh-Dole Act, Medicare Legislation, and the Health Insurance Portability and Accountability Act. The author questions the effectiveness of increasingly commercialized academic research and the limited success of the private sector in genomic research. The author concludes that future genomic research will require significantly increased patient participation, which may necessitate a reshaping of the pharmaceutical approach to medicine and the limited stake that patients have in the breakthroughs developed through their participation in the process.

  5. Thermophiles in the genomic era: Biodiversity, science, and applications.

    PubMed

    Urbieta, M Sofía; Donati, Edgardo R; Chan, Kok-Gan; Shahar, Saleha; Sin, Lee Li; Goh, Kian Mau

    2015-11-01

    Thermophiles and hyperthermophiles are present in various regions of the Earth, including volcanic environments, hot springs, mud pots, fumaroles, geysers, coastal thermal springs, and even deep-sea hydrothermal vents. They are also found in man-made environments, such as heated compost facilities, reactors, and spray dryers. Thermophiles, hyperthermophiles, and their bioproducts facilitate various industrial, agricultural, and medicinal applications and offer potential solutions to environmental damages and the demand for biofuels. Intensified efforts to sequence the entire genome of hyperthermophiles and thermophiles are increasing rapidly, as evidenced by the fact that over 120 complete genome sequences of the hyperthermophiles Aquificae, Thermotogae, Crenarchaeota, and Euryarchaeota are now available. In this review, we summarise the major current applications of thermophiles and thermozymes. In addition, emphasis is placed on recent progress in understanding the biodiversity, genomes, transcriptomes, metagenomes, and single-cell sequencing of thermophiles in the genomic era. PMID:25911946

  6. The culture of science and the ethics of alcohol administration in research.

    PubMed

    Goldman, M S

    2000-12-01

    The failure of ethicists to develop an absolute ethical code has led to the consideration of ethics in particular contexts. In the alcohol field, such consideration has resulted in considerable controversy, because this field has been influenced by parallel cultural contexts: a scientific research culture and a layman's spiritual culture (represented by Alcoholics Anonymous). Both cultures can inform ethical decisions, but for scientific decisions to be made the influence of these cultures must be disentangled. This article reviews issues pertaining to this disentangling in connection with the use of alcohol administration in research.

  7. Ignored Issues in e-Science: Collaboration, Provenance and the Ethics of Data

    NASA Astrophysics Data System (ADS)

    Hourcle, J. A.

    2009-12-01

    The issues of collaboration, provenance and the ethics of data are not new, but have existed for quite some time. The issue is in how to change the attitudes of the scientists that theses issues are worth their time to deal with, and how the scientists can easily learn what the necessary steps are to ensure that their data can be used by the greater community. At NASA, there have been changes to the heliophysics data policy which now mentions a need to integrate into the larger data environment [NASA, 2009]. This integration aspect is key, as simple linkages between discrete collections are not enough for effective and efficient reuse of scientific data. As each scientific mission funded by NASA is novel in some way, there is a belief by many scientists that every data system must be rebuilt from the ground up as well. Although there are often needs to tune systems to meet the needs of the primary investigation, there are limited, if any controls to ensure that the data systems can interoperate with the system of virtual observatories and other cross-discipline efforts being designed and implemented. We need to find a way to break the 'not-created-here' mentality, and push for PI teams to consider how to support the general science in their discipline when implementing their interfaces. We need to tell them what the requirements are for interfacing with the community search systems, and give PI teams a way to get advice on designing and implementing their data system in a way that doesn't create roadblocks to the greater community's attempts at using their data. If we had simple requirements checklists to explain the needs of each discipline, we could give scientists and reviewers an easy way to guage how useful and accesible the system would be. We present a generic checklist developed primarily for file-based feature and event catalogs [Hourcle, 2009], in hopes of inspiring others to develop similar requirements documents for each scientific discipline and to

  8. Is there a need for a code of ethics in science communication and Communicating Uncertainties on Climate Change?

    NASA Astrophysics Data System (ADS)

    Cegnar, T.; Benestad, R.; Billard, C.

    2010-09-01

    The EMS Media team recognises that: Scientific knowledge is valuable for society, but it also becomes fragile in a media-dominated society where the distortion of facts clouds the validity of the information. The use of scientific titles in communication normally brings expectations of high standards regarding the information content. Freedom of speech is fragile in the sense that it can be diluted by a high proportion of false information. The value of scientific and scholastic titles is degraded when they are used to give the impression of false validity. Science communication is powerful, and implies a certain responsibility and ethical standard. The scientific community operates with a more or less tacit ethics code in all areas touching the scientists' activities. Even though many scientific questions cannot be completely resolved, there is a set of established and unequivocal scientific practices, methods, and tests, on which our scientific knowledge rests. Scientists are assumed to master the scientific practices, methods, and tests. High standard in science-related communication and media exposure, openness, and honesty will increase the relevance of science, academies, and scientists in the society, in addition to benefiting the society itself. Science communication is important to maintain and enhance the general appreciation of science. The value of the role of science is likely to increase with a reduced distance between scientists and the society and a lower knowledge barrier. An awareness about the ethical aspects of science and science communication may aid scientists in making decisions about how and what to say. Scientists are often not trained in communication or ethics. A set of guide lines may lower the barrier for scientists concerned about tacit codes to come forward and talk to the media. Recommendations: The mass media should seek more insight into scientific knowledge, history, principles, and societies. Journalists and artists should be

  9. "I Don't Even Have Time to Be Their Friend!" Ethical Dilemmas in Ph.D. Supervision in the Hard Sciences

    ERIC Educational Resources Information Center

    Löfström, Erika; Pyhältö, Kirsi

    2015-01-01

    This study focused on exploring students' and supervisors' perceptions of ethical problems in doctoral supervision in the natural sciences. Fifteen supervisors and doctoral students in one research community in the natural sciences were interviewed about their practices and experiences in the doctoral process and supervision. We explored to what…

  10. Practical Guidance on Science and Engineering Ethics Education for Instructors and Administrators: Papers and Summary from a Workshop, December 12, 2012

    ERIC Educational Resources Information Center

    Benya, Frazier F., Ed.; Fletcher, Cameron H.,Ed.; Hollander, Rachelle D.,Ed.

    2013-01-01

    Over the last two decades, colleges and universities in the United States have significantly increased the formal ethics instruction they provide in science and engineering. Today, science and engineering programs socialize students into the values of scientists and engineers as well as their obligations in the conduct of scientific research and…

  11. From Utopia to Science: Challenges of Personalised Genomics Information for Health Management and Health Enhancement.

    PubMed

    Zwart, Hub

    2009-06-01

    From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of "anthropotechnologies" (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from "utopia" (or "dystopia") into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at least since the days of Plato's Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk's views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out.

  12. Science at the Ethical Frontier: Best Sci-Tech Books of 1993.

    ERIC Educational Resources Information Center

    Sapp, Gregg

    1994-01-01

    Provides an annotated bibliography of the 39 best science and technology books from 1993 in the areas of animal life, astronomy, biography, chemistry, earth science, environmental sciences, evolution, mathematics, medical sciences, natural history, paleontology, philosophy of science, physics, psychology, general science, and technology. Ethical…

  13. From "Personalized" to "Precision" Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.

    PubMed

    Juengst, Eric; McGowan, Michelle L; Fishman, Jennifer R; Settersten, Richard A

    2016-09-01

    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a "new paradigm for health care"-one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this "paradigm shift," creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a "scientific/intellectual social movement" within biomedicine. Proponents of this movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more "personalized," "predictive," "preventive," and "participatory" than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning "personalized medicine" in favor of a new label: "precision medicine." The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national "precision medicine initiative" to promote the development and use of genomic tools in health care. PMID:27649826

  14. A Study of the Relationship Between Nurses’ Professional Self-Concept and Professional Ethics in Hospitals Affiliated to Jahrom University of Medical Sciences, Iran

    PubMed Central

    Parandavar, Nehleh; Rahmanian, Afifeh; Jahromi, Zohreh Badiyepeymaie

    2016-01-01

    Background: Commitment to ethics usually results in nurses’ better professional performance and advancement. Professional self-concept of nurses refers to their information and beliefs about their roles, values, and behaviors. The objective of this study is to analyze the relationship between nurses’ professional self-concept and professional ethics in hospitals affiliated to Jahrom University of Medical Sciences. Methods: This cross sectional-analytical study was conducted in 2014. The 270 participants were practicing nurses and head-nurses at the teaching hospitals of Peimanieh and Motahari in Jahrom University of Medical Science. Sampling was based on sencus method. Data was collected using Cowin's Nurses’ self-concept questionnaire (NSCQ) and the researcher-made questionnaire of professional ethics. Results: The average of the sample's professional self-concept score was 6.48±0.03 out of 8. The average of the sample's commitment to professional ethics score was 4.08±0.08 out of 5. Based on Pearson's correlation test, there is a significant relationship between professional ethics and professional self-concept (P=0.01, r=0.16). Conclusion: In view of the correlation between professional self-concept and professional ethics, it is recommended that nurses’ self-concept, which can boost their commitment to ethics, be given more consideration. PMID:26573035

  15. Meeting Report: Genomics in the Undergraduate Curriculum--Rocket Science or Basic Science?

    ERIC Educational Resources Information Center

    Campbell, A. Malcolm

    2002-01-01

    At the 102nd annual meeting of the American Society for Microbiology (ASM) in Salt Lake City, Utah, members of the Genome Consortium for Active Teaching and faculty from around the world gathered to discuss educational genomics. The focus of the gathering was a series of presentations by faculty who have successfully incorporated genomics and…

  16. Opportunities and challenges of big data for the social sciences: The case of genomic data.

    PubMed

    Liu, Hexuan; Guo, Guang

    2016-09-01

    In this paper, we draw attention to one unique and valuable source of big data, genomic data, by demonstrating the opportunities they provide to social scientists. We discuss different types of large-scale genomic data and recent advances in statistical methods and computational infrastructure used to address challenges in managing and analyzing such data. We highlight how these data and methods can be used to benefit social science research.

  17. Opportunities and challenges of big data for the social sciences: The case of genomic data.

    PubMed

    Liu, Hexuan; Guo, Guang

    2016-09-01

    In this paper, we draw attention to one unique and valuable source of big data, genomic data, by demonstrating the opportunities they provide to social scientists. We discuss different types of large-scale genomic data and recent advances in statistical methods and computational infrastructure used to address challenges in managing and analyzing such data. We highlight how these data and methods can be used to benefit social science research. PMID:27480368

  18. `I Don't Even Have Time to be Their Friend!' Ethical Dilemmas in Ph.D. Supervision in the Hard Sciences

    NASA Astrophysics Data System (ADS)

    Löfström, Erika; Pyhältö, Kirsi

    2015-11-01

    This study focused on exploring students' and supervisors' perceptions of ethical problems in doctoral supervision in the natural sciences. Fifteen supervisors and doctoral students in one research community in the natural sciences were interviewed about their practices and experiences in the doctoral process and supervision. We explored to what extent doctoral students and supervisors experienced similar or different ethical challenges in the supervisory relationship and analyzed how the experiences of ethical dilemmas in supervision could be understood in light of the structure and practices of natural science research groups. The data were analyzed by theory-driven content analysis. Five ethical principles, namely non-maleficence, beneficence, autonomy, fidelity and justice, were used as a framework for identifying ethical issues. The results show that one major question that appears to underpin many of the emerging ethical issues is that the supervisors and students have different expectations of the supervisory role. The second important observation is that doctoral students primarily described their own experiences, whereas the supervisors described their activities as embedded in a system and elaborated on the causes and consequences at a system level.

  19. Research ethics in the dynamic of scientific field: challenges in the building of guidelines for social sciences and humanities.

    PubMed

    Guerriero, Iara Coelho Zito; Bosi, Maria Lúcia Magalhães

    2015-09-01

    The development of guidelines on research ethics for social science and humanities (SSH) takes place in the scientific field, marked by disputes aimed at the establishment of hegemonic scientific standard. In Brazil, the National Health Council is responsible for approving these guidelines, which involve certain specificities. Based on the authors' experience in the SSH Working Group of the National Commission on Research Ethics (GT CHS / CONEP), this article presents the process of development of guidelines for SSH, and some its challenges: the distance between the statutory guarantee and the effective execution of guidelines; the biomedical hegemony and the marginal position of the SSH in the CEP / CONEP system; the inadequacy of the current resolution facing the research features in CHS; the use of the concept of risk in guidelines aimed at SSH in the health area. Some interfaces and tensions in the debate between scientific merit and ethical evaluation are also discussed. The analysis highlights important impasses and difficulties regarding inter-paradigmatic dialogue in health research, considered the characteristics of the different traditions, the CONEP's heavily relying on the positivist perspective and the defense of that paradigm hegemony.

  20. Ethical issues in consumer genome sequencing: Use of consumers' samples and data

    PubMed Central

    Niemiec, Emilia; Howard, Heidi Carmen

    2016-01-01

    High throughput approaches such as whole genome sequencing (WGS) and whole exome sequencing (WES) create an unprecedented amount of data providing powerful resources for clinical care and research. Recently, WGS and WES services have been made available by commercial direct-to-consumer (DTC) companies. The DTC offer of genetic testing (GT) has already brought attention to potentially problematic issues such as the adequacy of consumers' informed consent and transparency of companies' research activities. In this study, we analysed the websites of four DTC GT companies offering WGS and/or WES with regard to their policies governing storage and future use of consumers' data and samples. The results are discussed in relation to recommendations and guiding principles such as the “Statement of the European Society of Human Genetics on DTC GT for health-related purposes” (2010) and the “Framework for responsible sharing of genomic and health-related data” (Global Alliance for Genomics and Health, 2014). The analysis reveals that some companies may store and use consumers' samples or sequencing data for unspecified research and share the data with third parties. Moreover, the companies do not provide sufficient or clear information to consumers about this, which can undermine the validity of the consent process. Furthermore, while all companies state that they provide privacy safeguards for data and mention the limitations of these, information about the possibility of re-identification is lacking. Finally, although the companies that may conduct research do include information regarding proprietary claims and commercialisation of the results, it is not clear whether consumers are aware of the consequences of these policies. These results indicate that DTC GT companies still need to improve the transparency regarding handling of consumers' samples and data, including having an explicit and clear consent process for research activities. PMID:27047756

  1. Ethical issues in consumer genome sequencing: Use of consumers' samples and data.

    PubMed

    Niemiec, Emilia; Howard, Heidi Carmen

    2016-03-01

    High throughput approaches such as whole genome sequencing (WGS) and whole exome sequencing (WES) create an unprecedented amount of data providing powerful resources for clinical care and research. Recently, WGS and WES services have been made available by commercial direct-to-consumer (DTC) companies. The DTC offer of genetic testing (GT) has already brought attention to potentially problematic issues such as the adequacy of consumers' informed consent and transparency of companies' research activities. In this study, we analysed the websites of four DTC GT companies offering WGS and/or WES with regard to their policies governing storage and future use of consumers' data and samples. The results are discussed in relation to recommendations and guiding principles such as the "Statement of the European Society of Human Genetics on DTC GT for health-related purposes" (2010) and the "Framework for responsible sharing of genomic and health-related data" (Global Alliance for Genomics and Health, 2014). The analysis reveals that some companies may store and use consumers' samples or sequencing data for unspecified research and share the data with third parties. Moreover, the companies do not provide sufficient or clear information to consumers about this, which can undermine the validity of the consent process. Furthermore, while all companies state that they provide privacy safeguards for data and mention the limitations of these, information about the possibility of re-identification is lacking. Finally, although the companies that may conduct research do include information regarding proprietary claims and commercialisation of the results, it is not clear whether consumers are aware of the consequences of these policies. These results indicate that DTC GT companies still need to improve the transparency regarding handling of consumers' samples and data, including having an explicit and clear consent process for research activities.

  2. Ethical issues in consumer genome sequencing: Use of consumers' samples and data.

    PubMed

    Niemiec, Emilia; Howard, Heidi Carmen

    2016-03-01

    High throughput approaches such as whole genome sequencing (WGS) and whole exome sequencing (WES) create an unprecedented amount of data providing powerful resources for clinical care and research. Recently, WGS and WES services have been made available by commercial direct-to-consumer (DTC) companies. The DTC offer of genetic testing (GT) has already brought attention to potentially problematic issues such as the adequacy of consumers' informed consent and transparency of companies' research activities. In this study, we analysed the websites of four DTC GT companies offering WGS and/or WES with regard to their policies governing storage and future use of consumers' data and samples. The results are discussed in relation to recommendations and guiding principles such as the "Statement of the European Society of Human Genetics on DTC GT for health-related purposes" (2010) and the "Framework for responsible sharing of genomic and health-related data" (Global Alliance for Genomics and Health, 2014). The analysis reveals that some companies may store and use consumers' samples or sequencing data for unspecified research and share the data with third parties. Moreover, the companies do not provide sufficient or clear information to consumers about this, which can undermine the validity of the consent process. Furthermore, while all companies state that they provide privacy safeguards for data and mention the limitations of these, information about the possibility of re-identification is lacking. Finally, although the companies that may conduct research do include information regarding proprietary claims and commercialisation of the results, it is not clear whether consumers are aware of the consequences of these policies. These results indicate that DTC GT companies still need to improve the transparency regarding handling of consumers' samples and data, including having an explicit and clear consent process for research activities. PMID:27047756

  3. Science, humanism, judgement, ethics: person-centered medicine as an emergent model of modern clinical practice.

    PubMed

    Miles, Andrew

    2013-01-01

    The Medical University of Plovdiv (MUP) has as its motto 'Committed to humanity". But what does humanity in modern medicine mean? Is it possible to practise a form of medicine that is without humanity? In the current article, it is argued that modern medicine is increasingly being practised in a de-personalised fashion, where the patient is understood not as a unique human individual, a person, but rather as a subject or an object and more in the manner of a complex biological machine. Medicine has, it is contended, become distracted from its duty to care, comfort and console as well as to ameliorate, attenuate and cure and that the rapid development of medicine's scientific knowledge is, paradoxically, principally causative. Signal occurrences in the 'patient as a person' movement are reviewed, together with the emergence of the evidence-based medicine (EBM) and patient-centered care (PCC) movements. The characteristics of a model of medicine evolving in response to medicine's current deficiencies--person-centered healthcare (PCH)--are noted and described. In seeking to apply science with humanism, via clinical judgement, within an ethical framework, it is contended that PCH will prove to be far more responsive to the needs of the individual patient and his/her personal circumstances than current models of practice, so that neither a reductive anatomico-pathological, disease-centric model of illness (EBM), nor an aggressive patient-directed, consumerist form of care (PCC) is allowed continued dominance within modern healthcare systems. In conclusion, it is argued that PCH will enable affordable advances in biomedicine and technology to be delivered to patients within a humanistic framework of clinical practice that recognises the patient as a person and which takes full account of his/her stories, values, preferences, goals, aspirations, fears, worries, hopes, cultural context and which responds to his/her psychological, emotional, spiritual and social necessities

  4. A Meta-Analysis of Ethics Instruction Effectiveness in the Sciences.

    PubMed

    Antes, Alison L; Murphy, Stephen T; Waples, Ethan P; Mumford, Michael D; Brown, Ryan P; Connelly, Shane; Devenport, Lynn D

    2009-09-01

    Scholars have proposed a number of courses and programs intended to improve the ethical behavior of scientists in an attempt to maintain the integrity of the scientific enterprise. In the present study, we conducted a quantitative meta-analysis based on 26 previous ethics program evaluation efforts, and the results showed that the overall effectiveness of ethics instruction was modest. The effects of ethics instruction, however, were related to a number of instructional program factors, such as course content and delivery methods, in addition to factors of the evaluation study itself, such as the field of investigator and criterion measure utilized. An examination of the characteristics contributing to the relative effectiveness of instructional programs revealed that more successful programs were conducted as seminars separate from the standard curricula rather than being embedded in existing courses. Furthermore, more successful programs were case-based, interactive and allowed participants to learn and practice the application of real-world ethical decision-making skills. The implications of these findings for future course development and evaluation are discussed.

  5. How Can Psychological Science Inform Research About Genetic Counseling for Clinical Genomic Sequencing?

    PubMed Central

    Rini, Christine; Bernhardt, Barbara A.; Roberts, J. Scott; Christensen, Kurt D.; Evans, James P.; Brothers, Kyle B.; Roche, Myra I.; Berg, Jonathan S.; Henderson, Gail E.

    2016-01-01

    Next generation genomic sequencing technologies (including whole genome or whole exome sequencing) are being increasingly applied to clinical care. Yet, the breadth and complexity of sequencing information raise questions about how best to communicate and return sequencing information to patients and families in ways that facilitate comprehension and optimal health decisions. Obtaining answers to such questions will require multidisciplinary research. In this paper, we focus on how psychological science research can address questions related to clinical genomic sequencing by explaining emotional, cognitive, and behavioral processes in response to different types of genomic sequencing information (e.g., diagnostic results and incidental findings). We highlight examples of psychological science that can be applied to genetic counseling research to inform the following questions: (1) What factors influence patients' and providers' informational needs for developing an accurate understanding of what genomic sequencing results do and do not mean?; (2) How and by whom should genomic sequencing results be communicated to patients and their family members?; and (3) How do patients and their families respond to uncertainties related to genomic information? PMID:25488723

  6. A Qualitative Evaluation of Ethics Educational Program in Health Science1

    PubMed Central

    Ekmekci, Perihan Elif; Oral, Murat; Yurdakul, Eray Serdar

    2015-01-01

    This paper originates from a panel discussion on the evaluation of “Ethics Educational Program in Health Sciences” held during the IAEE Conference 2014 Ankara, Turkey. The participants of the panel had consultations to solidify the concepts about the topic. The qualitative data out of these antecedent discussions became mature with the contributions in the panel. The outcome of this qualitative study mainly focuses on the examples of two current curricula; one from PhD on History of Medicine and Medical Ethics, the other one from an elective course on medical ethics as a part of a PhD program on Pharmacy Management and History, followed by the major challenges the trainees face during their education, their expectations and whether the program was satisfactory, the aspects of the programs which are prone to improvement and their overall evaluations of the programs. PMID:26664129

  7. Ethics: virtue and politics in the science and practice of psychology.

    PubMed

    Pettifor, J L

    1996-02-01

    The discipline of psychology is moving beyond the myth of detached neutrality to discover virtue and to recognize politics as forces which determine ethical behaviour. Humankind has struggled over the centuries to discover the nature of good and evil and to define the rightness and wrongness of human behaviour. Psychology has a short history in formalizing codes of ethics and codes of conduct. Current and historical events, concepts and values, including those based on philosophy and religion, have influenced the development of psychology's scientific and professional codes. The ethical behaviour of psychologists may be inspired by values, regulated by rules, determined by external pressures, or any combination of these. Emerging issues and challenges in today's changing and turbulent society require an incorporation of moral principles in finding acceptable strategies to achieve acceptable goals. May virtue and politics go hand in hand in creating a better world.

  8. The Latin American School of Human and Medical Genetics: promoting education and collaboration in genetics and ethics applied to health sciences across the continent.

    PubMed

    Giugliani, Roberto; Baldo, Guilherme; Vairo, Filippo; Lujan Lopez, Monica; Matte, Ursula

    2015-07-01

    The Latin American Network of Human Genetics (RELAGH) created the Latin American School of Human and Medical Genetics (ELAG) to prepare young researchers and professionals of Latin America to deal with the growing challenge of the genomic medicine. ELAG promotes an annually course since 2005, which received 838 students from 17 Latin American countries over these 10 years. ELAG plays an important role to provide education in genetics applied to health sciences to fellows who live in countries with a less favorable economic situation. Influenced, among others, by the humanitarian perspective of José Maria Cantú, one of its founders, ELAG has always favored the discussion of ethical and social issues related to genetics in Latin America. Few initiatives in Latin America lasted 10 consecutive years. One of the factors responsible for the ELAG's success has been its group of faculty members, who contribute to a friendly environment prone to facilitating the exchange of their own experiences with young researchers. PMID:26007289

  9. Cheering for Team Science | Office of Cancer Genomics

    Cancer.gov

    As a graduate student, my PhD thesis focused on the function of a single human gene, within a genome of some 20,000 genes. Although this sometimes made my work seem insignificant, I was reminded of how important one small piece of a large puzzle can be when I discovered all the ways the gene knockout cells were disadvantaged. Studying the basic biology of our cells made me appreciate the beautiful complexity of human biology.

  10. Genomic knowledge sharing: A review of the ethical and legal issues.

    PubMed

    Francis, Leslie P

    2014-12-01

    The importance of genomic information for care of individual patients and for the development of knowledge about treatment efficacy is becoming increasingly apparent. This information is probabilistic and involves the use of large data sets to increase the likelihood of detecting low frequency events. Duties and rights of patients with respect to this information have been much discussed, including informed consent to the use of individual information, privacy and confidentiality, rights to know or not to know, and individual ownership of information about themselves. But this is only one side of the information equation. On the other side of the equation are duties of information holders: malpractice and duties to warn, responsibilities of data stewardship, intellectual property and ownership, reciprocity, and justice. This article argues that if we take duties of patients to share information seriously, we must also consider duties on the part of information holders about how they protect and use information. PMID:27294025

  11. What are applied ethics?

    PubMed

    Allhoff, Fritz

    2011-03-01

    This paper explores the relationships that various applied ethics bear to each other, both in particular disciplines and more generally. The introductory section lays out the challenge of coming up with such an account and, drawing a parallel with the philosophy of science, offers that applied ethics may either be unified or disunified. The second section develops one simple account through which applied ethics are unified, vis-à-vis ethical theory. However, this is not taken to be a satisfying answer, for reasons explained. In the third section, specific applied ethics are explored: biomedical ethics; business ethics; environmental ethics; and neuroethics. These are chosen not to be comprehensive, but rather for their traditions or other illustrative purposes. The final section draws together the results of the preceding analysis and defends a disunity conception of applied ethics.

  12. Teaching ethics to trainees.

    PubMed

    Snyder, Russell D

    2002-03-01

    Medical events contain many sources of uncertainty. Instruction in medical ethics gives trainees vital knowledge that assists them with some of the sources of uncertainty. Instruction to provide this knowledge is not available from the usual science curriculum. From an understanding of the principles of ethics flows an application of those principles to timely ethical issues. Ethics education has become a mandated feature in accredited residency training programs. A flexible curriculum in ethics can be developed for trainees in child neurology. The education program encourages thoughtful caregivers and teaches the methods for resolution of ethical issues and conflicts. Selection of topics is based on faculty and trainee interest and on situations of current relevance in the training program. Ethics education results in trainees who become capable of ethical reasoning and capable of resolving many of the clinical situations where issues arise that require decisions based on ethical principles.

  13. Caring Science: Transforming the Ethic of Caring-Healing Practice, Environment, and Culture within an Integrated Care Delivery System.

    PubMed

    Foss Durant, Anne; McDermott, Shawna; Kinney, Gwendolyn; Triner, Trudy

    2015-01-01

    In early 2010, leaders within Kaiser Permanente (KP) Northern California's Patient Care Services division embarked on a journey to embrace and embed core tenets of Caring Science into the practice, environment, and culture of the organization. Caring Science is based on the philosophy of Human Caring, a theory articulated by Jean Watson, PhD, RN, AHN-BC, FAAN, as a foundational covenant to guide nursing as a discipline and a profession. Since 2010, Caring Science has enabled KP Northern California to demonstrate its commitment to being an authentic person- and family-centric organization that promotes and advocates for total health. This commitment empowers KP caregivers to balance the art and science of clinical judgment by considering the needs of the whole person, honoring the unique perception of health and healing that each member or patient holds, and engaging with them to make decisions that nurture their well-being. The intent of this article is two-fold: 1) to provide context and background on how a professional practice framework was used to transform the ethic of caring-healing practice, environment, and culture across multiple hospitals within an integrated delivery system; and 2) to provide evidence on how integration of Caring Science across administrative, operational, and clinical areas appears to contribute to meaningful patient quality and health outcomes. PMID:26828076

  14. Caring Science: Transforming the Ethic of Caring-Healing Practice, Environment, and Culture within an Integrated Care Delivery System.

    PubMed

    Foss Durant, Anne; McDermott, Shawna; Kinney, Gwendolyn; Triner, Trudy

    2015-01-01

    In early 2010, leaders within Kaiser Permanente (KP) Northern California's Patient Care Services division embarked on a journey to embrace and embed core tenets of Caring Science into the practice, environment, and culture of the organization. Caring Science is based on the philosophy of Human Caring, a theory articulated by Jean Watson, PhD, RN, AHN-BC, FAAN, as a foundational covenant to guide nursing as a discipline and a profession. Since 2010, Caring Science has enabled KP Northern California to demonstrate its commitment to being an authentic person- and family-centric organization that promotes and advocates for total health. This commitment empowers KP caregivers to balance the art and science of clinical judgment by considering the needs of the whole person, honoring the unique perception of health and healing that each member or patient holds, and engaging with them to make decisions that nurture their well-being. The intent of this article is two-fold: 1) to provide context and background on how a professional practice framework was used to transform the ethic of caring-healing practice, environment, and culture across multiple hospitals within an integrated delivery system; and 2) to provide evidence on how integration of Caring Science across administrative, operational, and clinical areas appears to contribute to meaningful patient quality and health outcomes.

  15. Using a popular science nonfiction book to introduce biomedical research ethics in a biology majors course.

    PubMed

    Walton, Kristen L W

    2014-12-01

    Although bioethics is an important topic in modern society, it is not a required part of the curriculum for many biology degree programs in the United States. Students in our program are exposed to biologically relevant ethical issues informally in many classes, but we do not have a requirement for a separate bioethics course. The Immortal Life of Henrietta Lacks is a recent nonfiction book that describes the life of the woman whose cervical cancer biopsy gave rise to the HeLa cell line, as well as discussing relevant medical, societal, and ethical issues surrounding human tissue use for research. Weekly reading assignments from the book with discussion questions and a final paper were used to engage students in learning about the ethics of human subjects and human tissues research. Students were surveyed for qualitative feedback on the usefulness of including this book as part of the course. This book has been a successful platform for increasing student knowledge and interest in ethics related to biomedical and biological research.

  16. Teaching Societal and Ethical Implications of Nanotechnology to Engineering Students through Science Fiction

    ERIC Educational Resources Information Center

    Berne, Rosalyn W.; Schummer, Joachim

    2005-01-01

    Societal and ethical implications of nanotechnology have become a hot topic of public debates in many countries because both revolutionary changes and strong public concerns are expected from its development. Because nanotechnology is, at this point, mostly articulated in visionary and futuristic terms, it is difficult to apply standard methods of…

  17. Genetic counselors: translating genomic science into clinical practice

    PubMed Central

    Bennett, Robin L.; Hampel, Heather L.; Mandell, Jessica B.; Marks, Joan H.

    2003-01-01

    In a time of emerging genetic tests and technologies, genetic counselors are faced with the challenge of translating complex genomic data into information that will aid their client’s ability to learn about, understand, make, and cope with decisions relating to genetic diagnoses. The first of two companion articles in this issue examines the role of the genetic counselor, particularly in counseling individuals at risk for or diagnosed with breast cancer, in an era of high-tech health care and gene patents. PMID:14597750

  18. Post-genomics nanotechnology is gaining momentum: nanoproteomics and applications in life sciences.

    PubMed

    Kobeissy, Firas H; Gulbakan, Basri; Alawieh, Ali; Karam, Pierre; Zhang, Zhiqun; Guingab-Cagmat, Joy D; Mondello, Stefania; Tan, Weihong; Anagli, John; Wang, Kevin

    2014-02-01

    The post-genomics era has brought about new Omics biotechnologies, such as proteomics and metabolomics, as well as their novel applications to personal genomics and the quantified self. These advances are now also catalyzing other and newer post-genomics innovations, leading to convergences between Omics and nanotechnology. In this work, we systematically contextualize and exemplify an emerging strand of post-genomics life sciences, namely, nanoproteomics and its applications in health and integrative biological systems. Nanotechnology has been utilized as a complementary component to revolutionize proteomics through different kinds of nanotechnology applications, including nanoporous structures, functionalized nanoparticles, quantum dots, and polymeric nanostructures. Those applications, though still in their infancy, have led to several highly sensitive diagnostics and new methods of drug delivery and targeted therapy for clinical use. The present article differs from previous analyses of nanoproteomics in that it offers an in-depth and comparative evaluation of the attendant biotechnology portfolio and their applications as seen through the lens of post-genomics life sciences and biomedicine. These include: (1) immunosensors for inflammatory, pathogenic, and autoimmune markers for infectious and autoimmune diseases, (2) amplified immunoassays for detection of cancer biomarkers, and (3) methods for targeted therapy and automatically adjusted drug delivery such as in experimental stroke and brain injury studies. As nanoproteomics becomes available both to the clinician at the bedside and the citizens who are increasingly interested in access to novel post-genomics diagnostics through initiatives such as the quantified self, we anticipate further breakthroughs in personalized and targeted medicine.

  19. Findings from an Independent Evaluation of the AMNH's Online Seminars on Science Course: "Genetics, Genomics, Genethics"

    ERIC Educational Resources Information Center

    Inverness Research, 2008

    2008-01-01

    Inverness Research studied the American Museum of Natural History (AMNH) Seminars on Science program for eight years, from its inception in 1998 to 2006. This paper presents teacher survey ratings for "Genetics, Genomics, Genethics", along with profiles of three teachers who took the course. Course takers report on the annual follow-up surveys…

  20. Addressing the Dynamics of Science in Curricular Reform for Scientific Literacy: The Case of Genomics

    ERIC Educational Resources Information Center

    van Eijck, Michiel

    2010-01-01

    Science education reform must anticipate the scientific literacy required by the next generation of citizens. Particularly, this counts for rapidly emerging and evolving scientific disciplines such as genomics. Taking this discipline as a case, such anticipation is becoming increasingly problematic in today's knowledge societies in which the…

  1. Yesterday's war; tomorrow's technology: peer commentary on ‘Ethical, legal, social and policy issues in the use of genomic technologies by the US military’

    PubMed Central

    Evans, Nicholas G.; Moreno, Jonathan D.

    2014-01-01

    A recent article by Maxwell J. Mehlman and Tracy Yeheng Li, in the Journal of Law and the Biosciences, sought to examine the ethical, legal, social, and policy issues associated with the use of genetic screening and germ-line therapies (‘genomic technologies’) by the US Military. In this commentary, we will elaborate several related matters: the relationship between genetic and non-genetic screening methods, the history of selection processes and force strength, and the consequences and ethics of, as Mehlman and Li suggest, engineering enhanced soldiers. We contend, first, that the strengths of genomic testing as a method of determining enrollment in the armed forces has limited appeal, given the state of current selection methods in the US armed forces. Second, that the vagaries of genetic selection, much like other forms of selection that do not bear causally or reliably on soldier performance (such as race, gender, and sexuality), pose a systematic threat to force strength by limiting the (valuable) diversity of combat units. Third, that the idea of enhancing warfighters through germ-line interventions poses serious ethical issues in terms of the control and ownership of ‘enhancements’ when members separate from service. PMID:27774182

  2. Doctoral students in the life sciences: Perceptions related to the impact of changing expectations and modes of support on research ethics and norms

    NASA Astrophysics Data System (ADS)

    Fajen, Ava Lee

    Scholars predict that the current institutional, state, and federal push for the commercialization of research, as well as increases in industry funding, will challenge, and perhaps even alter, the culture and ethical standards of academe. A focal point for these trends at many institutions is the current emphasis on life sciences research. This study builds on what is known about doctoral students and their ethical training in the life sciences by examining the individual experiences of doctoral students within the context of changing research expectations and funding patterns at one research university. The project was conducted using a case study approach within the naturalistic tradition. Twenty-four advanced doctoral student in the life sciences were interviewed. They were asked about their perceptions and experiences related to three broad topics: the normative and ethical aspects of academic research behavior; the impact of changing funding sources and changing expectations for research outcomes; and the aspects of their graduate education and training related to research norms and ethics. A systematic qualitative data analysis process allowed the richness and complexity of the students' views and concerns to be revealed. The results of this study highlight their individual and shared understandings and experiences, provide a conceptual framework for understanding their perceptions, and offer related recommendations for improving doctoral education within the current, ethically complex research context.

  3. Frankenstein, Dolly, and Ethics.

    ERIC Educational Resources Information Center

    Bushweller, Kevin

    1998-01-01

    A growing cadre of science teachers and researchers are developing curriculum blueprints for teaching the science and ethics of genetics to help students put advances in biotechnology into proper perspective. Lists five sources for teaching genetics. (MLF)

  4. Applications of Genome-based Science in Shaping Citrus Industries of the World (JGI Seventh Annual User Meeting, 2012: Genomics of Energy and Environment)

    SciTech Connect

    Gmitter Jr, Fred

    2012-03-21

    Fred Gmitter from the University of Florida on "Applications of Genome-based Science in Shaping the Future of the World's Citrus Industries" at the 7th Annual Genomics of Energy & Environment Meeting on March 21, 2012 in Walnut Creek, California.

  5. Applications of Genome-based Science in Shaping Citrus Industries of the World (JGI Seventh Annual User Meeting, 2012: Genomics of Energy and Environment)

    ScienceCinema

    Gmitter Jr, Fred [University of Florida

    2016-07-12

    Fred Gmitter from the University of Florida on "Applications of Genome-based Science in Shaping the Future of the World's Citrus Industries" at the 7th Annual Genomics of Energy & Environment Meeting on March 21, 2012 in Walnut Creek, California.

  6. Genetic Technologies and Ethics

    PubMed Central

    Ardekani, Ali M.

    2009-01-01

    In the past decade, the human genome has been completely sequenced and the knowledge from it has begun to influence the fields of biological and social sciences in fundamental ways. Identification of about 25000 genes in the human genome is expected to create great benefits in diagnosis and treatment of diseases in the coming years. However, Genetic technologies have also created many interesting and difficult ethical issues which can affect the human societies now and in the future. Application of genetic technologies in the areas of stem cells, cloning, gene therapy, genetic manipulation, gene selection, sex selection and preimplantation diagnosis has created a great potential for the human race to influence and change human life on earth as we know it today. Therefore, it is important for leaders of societies in the modern world to pay attention to the advances in genetic technologies and prepare themselves and those institutions under their command to face the challenges which these new technologies induce in the areas of ethics, law and social policies. PMID:23908725

  7. The Physician's Role in Ethical Decisions

    ERIC Educational Resources Information Center

    Chevalier, Robert B.

    1977-01-01

    Many medical issues today require ethical as well as strictly medical decisions. Described is the need for the inclusion of medical ethics in the schools, beginning with science ethics in the secondary level and continuing through medical school. (MA)

  8. Science, medicine, and the future. Prospecting for gold in the human genome.

    PubMed Central

    Savill, J.

    1997-01-01

    Doctors struggling with the daily problems of clinical medicine usually have little time for molecular and cell biology. But genetic research is producing an explosion of knowledge which doctors will need to understand in order to join in the ethical and financial debates that will inevitably follow the new treatments discovered. There may, indeed, be therapeutic gold hidden in our genes, but the price for it could be more than we can afford. This is the first of three articles introducing a series which aims to convey the excitement and potential power of biomedical science by speculating how current research will impinge on clinical management of common conditions. PMID:9001481

  9. From Utopia to Science: Challenges of Personalised Genomics Information for Health Management and Health Enhancement

    PubMed Central

    2009-01-01

    From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at least since the days of Plato’s Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. PMID:20234832

  10. Should the century-old practice of psychotherapy defer to science and ignore its foundations in two millennia of ethical thought?

    PubMed

    Allen, Jon G

    2016-01-01

    While agreeing with the mainstream view that psychotherapeutic practice must be grounded in science, including research on the effectiveness of psychotherapy, the author advocates giving more weight to the venerable philosophical literature on ethics that bears directly on what patients bring to therapists: problems in living. These problems have been the domain of ethics since Socrates, who--like psychotherapists--promoted reflective dialogue. This article reviews some contemporary thought regarding the importance of reflection and the limits that patients and therapists face in promoting it. Relying on attachment theory and the process of mentalizing, the author identifies a convergence of science and ethics in the therapeutic aspiration to cultivate epistemic trust and illustrates this convergence with a case example. PMID:27028336

  11. [Experimental, innovative and standard procedures. Ethics and science in the introduction of medical technology].

    PubMed

    Pons, J M V

    2003-01-01

    The dividing lines between experimental, innovative and standard medical procedures are frequently blurred in current clinical practice. This is even more true in the fields of surgery and implantable devices. These differ substantially from pharmacological interventions, which are better regulated.However, the character of the various medical interventions applied in human subjects should be ethically and scientifically delimited as clearly as possible. This task cannot be abandoned to personal discretion and criteria, which are currently used, especially in the field of surgical innovation. External and independent review of the risk-benefit ratio of proposed innovations should enable specification of the particular features of a technique in the patient-doctor relationship, as well as the ethical and scientific requirements for more appropriate evaluation.

  12. What Role for Law, Human Rights, and Bioethics in an Age of Big Data, Consortia Science, and Consortia Ethics? The Importance of Trustworthiness

    PubMed Central

    Dove, Edward S.; Özdemir, Vural

    2015-01-01

    The global bioeconomy is generating new paradigm-shifting practices of knowledge co-production, such as collective innovation; large-scale, data-driven global consortia science (Big Science); and consortia ethics (Big Ethics). These bioeconomic and sociotechnical practices can be forces for progressive social change, but they can also raise predicaments at the interface of law, human rights, and bioethics. In this article, we examine one such double-edged practice: the growing, multivariate exploitation of Big Data in the health sector, particularly by the private sector. Commercial exploitation of health data for knowledge-based products is a key aspect of the bioeconomy and is also a topic of concern among publics around the world. It is exacerbated in the current age of globally interconnected consortia science and consortia ethics, which is characterized by accumulating epistemic proximity, diminished academic independence, “extreme centrism”, and conflicted/competing interests among innovation actors. Extreme centrism is of particular importance as a new ideology emerging from consortia science and consortia ethics; this relates to invariably taking a middle-of-the-road populist stance, even in the event of human rights breaches, so as to sustain the populist support needed for consortia building and collective innovation. What role do law, human rights, and bioethics—separate and together—have to play in addressing these predicaments and opportunities in early 21st century science and society? One answer we propose is an intertwined ethico-legal normative construct, namely trustworthiness. By considering trustworthiness as a central pillar at the intersection of law, human rights, and bioethics, we enable others to trust us, which in turns allows different actors (both nonprofit and for-profit) to operate more justly in consortia science and ethics, as well as to access and responsibly use health data for public benefit. PMID:26345196

  13. The Impact of Transformational Leadership, Experiential Learning, and Reflective Journaling on the Conservation Ethic of Tertiary-Level Non-Science Majors

    ERIC Educational Resources Information Center

    Reynolds, Bradley Robert

    2013-01-01

    The impact of transformational leadership, experiential learning, and reflective journaling on the conservation ethic of non-science majors in a general education survey course was investigated. The main research questions were: (1) Is the Conservation of Biodiversity professor a transformational leader? (2) Is there a difference in the…

  14. Research and Teaching: An Investigation of the Evolution of High School and Undergraduate Student Researchers' Understanding of Key Science Ethics Concepts

    ERIC Educational Resources Information Center

    Mabrouk, Patricia Ann

    2013-01-01

    High school and undergraduate research students were surveyed over the 10-week period of their summer research programs to investigate their understanding of key concepts in science ethics and whether their understanding changed over the course of their summer research experiences. Most of the students appeared to understand the issues relevant to…

  15. Articles on Practical Cybernetics. Computer-Developed Computers; Heuristics and Modern Sciences; Linguistics and Practice; Cybernetics and Moral-Ethical Considerations; and Men and Machines at the Chessboard.

    ERIC Educational Resources Information Center

    Berg, A. I.; And Others

    Five articles which were selected from a Russian language book on cybernetics and then translated are presented here. They deal with the topics of: computer-developed computers, heuristics and modern sciences, linguistics and practice, cybernetics and moral-ethical considerations, and computer chess programs. (Author/JY)

  16. The Ethics and Politics of Ethics Approval

    ERIC Educational Resources Information Center

    Battin, Tim; Riley, Dan; Avery, Alan

    2014-01-01

    The regulatory scope of Human Research Ethics Committees can be problematic for a variety of reasons. Some scholars have argued the ethics approval process, for example, is antithetical to certain disciplines in the humanities and social sciences, while others are willing to give it qualified support. This article uses a case study to cast the…

  17. Ethical issues in biotechnology.

    PubMed

    Polkinghorne, J C

    2000-01-01

    New ethical questions have arisen from our ability to intervene in the structure of the genome. Responsible use of this technique requires ethical evaluation in which experts, potential beneficiaries and the general public should all participate. The examples of genetically modified food and of human genetics help to illustrate the issues involved.

  18. Genome sequences published outside of Standards in Genomic Sciences, January – June 2011

    PubMed Central

    Nelson, Oranmiyan W.; Garrity, George M.

    2011-01-01

    The purpose of this table is to provide the community with a citable record of publications of ongoing genome sequencing projects that have led to a publication in the scientific literature. While our goal is to make the list complete, there is no guarantee that we may have omitted one or more publications appearing in this time frame. Readers and authors who wish to have publications added to this subsequent versions of this list are invited to provide the bibliometric data for such references to the SIGS editorial office.

  19. The New World of Human Genetics: A dialogue between Practitioners & the General Public on Ethical, Legal & Social Implications of the Human Genome Project

    SciTech Connect

    Schofield, Amy

    2014-12-08

    The history and reasons for launching the Human Genome project and the current uses of genetic human material; Identifying and discussing the major issues stemming directly from genetic research and therapy-including genetic discrimination, medical/ person privacy, allocation of government resources and individual finances, and the effect on the way in which we perceive the value of human life; Discussing the sometimes hidden ethical, social and legislative implications of genetic research and therapy such as informed consent, screening and preservation of genetic materials, efficacy of medical procedures, the role of the government, and equal access to medical coverage.

  20. How Many Principles for Public Health Ethics?

    PubMed

    Coughlin, Steven S

    2008-01-01

    General moral (ethical) principles play a prominent role in certain methods of moral reasoning and ethical decision-making in bioethics and public health. Examples include the principles of respect for autonomy, beneficence, nonmaleficence, and justice. Some accounts of ethics in public health have pointed to additional principles related to social and environmental concerns, such as the precautionary principle and principles of solidarity or social cohesion. This article provides an overview of principle-based methods of moral reasoning as they apply to public health ethics including a summary of advantages and disadvantages of methods of moral reasoning that rely upon general principles of moral reasoning. Drawing upon the literature on public health ethics, examples are provided of additional principles, obligations, and rules that may be useful for analyzing complex ethical issues in public health. A framework is outlined that takes into consideration the interplay of ethical principles and rules at individual, community, national, and global levels. Concepts such as the precautionary principle and solidarity are shown to be useful to public health ethics to the extent that they can be shown to provide worthwhile guidance and information above and beyond principles of beneficence, nonmaleficence, and justice, and the clusters of rules and maxims that are linked to these moral principles. Future directions likely to be productive include further work on areas of public health ethics such as public trust, community empowerment, the rights of individuals who are targeted (or not targeted) by public health interventions, individual and community resilience and wellbeing, and further clarification of principles, obligations, and rules in public health disciplines such as environmental science, prevention and control of chronic and infectious diseases, genomics, and global health. PMID:20072707

  1. How Many Principles for Public Health Ethics?

    PubMed Central

    Coughlin, Steven S.

    2009-01-01

    General moral (ethical) principles play a prominent role in certain methods of moral reasoning and ethical decision-making in bioethics and public health. Examples include the principles of respect for autonomy, beneficence, nonmaleficence, and justice. Some accounts of ethics in public health have pointed to additional principles related to social and environmental concerns, such as the precautionary principle and principles of solidarity or social cohesion. This article provides an overview of principle-based methods of moral reasoning as they apply to public health ethics including a summary of advantages and disadvantages of methods of moral reasoning that rely upon general principles of moral reasoning. Drawing upon the literature on public health ethics, examples are provided of additional principles, obligations, and rules that may be useful for analyzing complex ethical issues in public health. A framework is outlined that takes into consideration the interplay of ethical principles and rules at individual, community, national, and global levels. Concepts such as the precautionary principle and solidarity are shown to be useful to public health ethics to the extent that they can be shown to provide worthwhile guidance and information above and beyond principles of beneficence, nonmaleficence, and justice, and the clusters of rules and maxims that are linked to these moral principles. Future directions likely to be productive include further work on areas of public health ethics such as public trust, community empowerment, the rights of individuals who are targeted (or not targeted) by public health interventions, individual and community resilience and wellbeing, and further clarification of principles, obligations, and rules in public health disciplines such as environmental science, prevention and control of chronic and infectious diseases, genomics, and global health. PMID:20072707

  2. Social and ethical dimension of the natural sciences, complex problems of the age, interdisciplinarity, and the contribution of education

    NASA Astrophysics Data System (ADS)

    Develaki, Maria

    2008-09-01

    In view of the complex problems of this age, the question of the socio-ethical dimension of science acquires particular importance. We approach this matter from a philosophical and sociological standpoint, looking at such focal concerns as the motivation, purposes and methods of scientific activity, the ambivalence of scientific research and the concomitant risks, and the conflict between research freedom and external socio-political intervention. We then point out the impediments to the effectiveness of cross-disciplinary or broader meetings for addressing these complex problems and managing the associated risks, given the difficulty in communication between experts in different fields and non-experts, difficulties that education is challenged to help resolve. We find that the social necessity of informed decision-making on the basis of cross-disciplinary collaboration is reflected in the newer curricula, such as that of Greece, in aims like the acquisition of cross-subject knowledge and skills, and the ability to make decisions on controversial issues involving value conflicts. The interest and the reflections of the science education community in these matters increase its—traditionally limited—contribution to the theoretical debate on education and, by extension, the value of science education in the education system.

  3. The step to rationality: the efficacy of thought experiments in science, ethics, and free will.

    PubMed

    Shepard, Roger N

    2008-01-01

    Examples from Archimedes, Galileo, Newton, Einstein, and others suggest that fundamental laws of physics were-or, at least, could have been-discovered by experiments performed not in the physical world but only in the mind. Although problematic for a strict empiricist, the evolutionary emergence in humans of deeply internalized implicit knowledge of abstract principles of transformation and symmetry may have been crucial for humankind's step to rationality-including the discovery of universal principles of mathematics, physics, ethics, and an account of free will that is compatible with determinism.

  4. [Scientometrics and publishing in Hungarian medical science. Ethical and technical issues].

    PubMed

    Fazekas, T; Varró, V

    2001-11-11

    The authors present an account of the main ethical and technical aspects relating to the measurement of medical publication activities and the compilation of publications lists. It is demonstrated that the Anglo-American scientometric system (Institute for Scientific Information, USA) is currently gaining stable ground in Hungary. At the same time, however, there continues to be a place for a national publication index used to assess Hungarian-language publication activity, for the two systems conveniently supplement one another. The criterion system of medical publishing established by the International Committee of Medical Journal Editors (ICMJE) is described in detail, and is recommended for wide-ranging application in Hungary.

  5. Genomics: The Science and Technology Behind the Human Genome Project (by Charles R. Cantor and Cassandra L. Smith)

    NASA Astrophysics Data System (ADS)

    Serra, Reviewed By Martin J.

    2000-01-01

    Genomics is one of the most rapidly expanding areas of science. This book is an outgrowth of a series of lectures given by one of the former heads (CRC) of the Human Genome Initiative. The book is designed to reach a wide audience, from biologists with little chemical or physical science background through engineers, computer scientists, and physicists with little current exposure to the chemical or biological principles of genetics. The text starts with a basic review of the chemical and biological properties of DNA. However, without either a biochemistry background or a supplemental biochemistry text, this chapter and much of the rest of the text would be difficult to digest. The second chapter is designed to put DNA into the context of the larger chromosomal unit. Specialized chromosomal structures and sequences (centromeres, telomeres) are introduced, leading to a section on chromosome organization and purification. The next 4 chapters cover the physical (hybridization, electrophoresis), chemical (polymerase chain reaction), and biological (genetic) techniques that provide the backbone of genomic analysis. These chapters cover in significant detail the fundamental principles underlying each technique and provide a firm background for the remainder of the text. Chapters 7­9 consider the need and methods for the development of physical maps. Chapter 7 primarily discusses chromosomal localization techniques, including in situ hybridization, FISH, and chromosome paintings. The next two chapters focus on the development of libraries and clones. In particular, Chapter 9 considers the limitations of current mapping and clone production. The current state and future of DNA sequencing is covered in the next three chapters. The first considers the current methods of DNA sequencing - especially gel-based methods of analysis, although other possible approaches (mass spectrometry) are introduced. Much of the chapter addresses the limitations of current methods, including

  6. How computer science can help in understanding the 3D genome architecture.

    PubMed

    Shavit, Yoli; Merelli, Ivan; Milanesi, Luciano; Lio', Pietro

    2016-09-01

    Chromosome conformation capture techniques are producing a huge amount of data about the architecture of our genome. These data can provide us with a better understanding of the events that induce critical regulations of the cellular function from small changes in the three-dimensional genome architecture. Generating a unified view of spatial, temporal, genetic and epigenetic properties poses various challenges of data analysis, visualization, integration and mining, as well as of high performance computing and big data management. Here, we describe the critical issues of this new branch of bioinformatics, oriented at the comprehension of the three-dimensional genome architecture, which we call 'Nucleome Bioinformatics', looking beyond the currently available tools and methods, and highlight yet unaddressed challenges and the potential approaches that could be applied for tackling them. Our review provides a map for researchers interested in using computer science for studying 'Nucleome Bioinformatics', to achieve a better understanding of the biological processes that occur inside the nucleus.

  7. The Budapest Meeting 2005 intensified networking on ethics of science: the case of reproductive cloning, germline gene therapy and human dignity.

    PubMed

    Van Steendam, Guido; Dinnyés, András; Mallet, Jacques; Meloni, Rolando; Casabona, Carlos Romeo; González, Jorge Guerra; Kure, Josef; Szathmáry, Eörs; Vorstenbosch, Jan; Molnár, Péter; Edbrooke, David; Sándor, Judit; Oberfrank, Ferenc; Cole-Turner, Ron; Hargittai, István; Littig, Beate; Ladikas, Miltos; Mordini, Emilio; Roosendaal, Hans E; Salvi, Maurizio; Gulyás, Balázs; Malpede, Diana

    2006-10-01

    This paper reports on the meeting of the Sounding Board of the EU Reprogenetics Project that was held in Budapest, Hungary, 6-9 November 2005. The Reprogenetics Project runs from 2004 until 2007 and has a brief to study the ethical aspects of human reproductive cloning and germline gene therapy. Discussions during The Budapest Meeting are reported in depth in this paper as well as the initiatives to involve the participating groups and others in ongoing collaborations with the goal of forming an integrated network of European resources in the fields of ethics of science.

  8. A Pedagogical Model for Ethical Inquiry into Socioscientific Issues in Science

    ERIC Educational Resources Information Center

    Saunders, Kathryn J.; Rennie, Leonie J.

    2013-01-01

    Internationally there is concern that many science teachers do not address socioscientific issues (SSI) in their classrooms, particularly those that are controversial. However with increasingly complex, science-based dilemmas being presented to society, such as cloning, genetic screening, alternative fuels, reproductive technologies and…

  9. Human Science for Human Freedom? Piaget's Developmental Research and Foucault's Ethical Truth Games

    ERIC Educational Resources Information Center

    Zhao, Guoping

    2012-01-01

    The construction of the modern subject and the pursuit of human freedom and autonomy, as well as the practice of human science has been pivotal in the development of modern education. But for Foucault, the subject is only the effect of discourses and power-knowledge arrangements, and modern human science is part of the very arrangement that has…

  10. Trash Conflicts: A Science and Social Studies Curriculum on the Ethics of Disposal. An Interdisciplinary Curriculum.

    ERIC Educational Resources Information Center

    Ballin, Amy; And Others

    Designed for middle school science and social studies classes, this document is a curriculum on waste disposal. Mathematics and language skills also are incorporated into many of the activities. In the study of trash disposal, science students benefit from understanding the social issues related to the problem. Social studies students need…

  11. What can we Learn from Patients' Ethical Thinking about the right 'not to know' in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling.

    PubMed

    Cowley, Lorraine

    2016-10-01

    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees' experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as 'common sense'; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow 'common sense' were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners' decisions by expressing a preference for or defending choice over responsibility. The 'right not to know' seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the 'right not to know' in the genomic age could have subtle yet profound consequences for family relationships. PMID:27523581

  12. What can we Learn from Patients' Ethical Thinking about the right 'not to know' in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling.

    PubMed

    Cowley, Lorraine

    2016-10-01

    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees' experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as 'common sense'; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow 'common sense' were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners' decisions by expressing a preference for or defending choice over responsibility. The 'right not to know' seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the 'right not to know' in the genomic age could have subtle yet profound consequences for family relationships.

  13. Post-Genomics Nanotechnology Is Gaining Momentum: Nanoproteomics and Applications in Life Sciences

    PubMed Central

    Kobeissy, Firas H.; Gulbakan, Basri; Alawieh, Ali; Karam, Pierre; Zhang, Zhiqun; Guingab-Cagmat, Joy D.; Mondello, Stefania; Tan, Weihong; Anagli, John

    2014-01-01

    Abstract The post-genomics era has brought about new Omics biotechnologies, such as proteomics and metabolomics, as well as their novel applications to personal genomics and the quantified self. These advances are now also catalyzing other and newer post-genomics innovations, leading to convergences between Omics and nanotechnology. In this work, we systematically contextualize and exemplify an emerging strand of post-genomics life sciences, namely, nanoproteomics and its applications in health and integrative biological systems. Nanotechnology has been utilized as a complementary component to revolutionize proteomics through different kinds of nanotechnology applications, including nanoporous structures, functionalized nanoparticles, quantum dots, and polymeric nanostructures. Those applications, though still in their infancy, have led to several highly sensitive diagnostics and new methods of drug delivery and targeted therapy for clinical use. The present article differs from previous analyses of nanoproteomics in that it offers an in-depth and comparative evaluation of the attendant biotechnology portfolio and their applications as seen through the lens of post-genomics life sciences and biomedicine. These include: (1) immunosensors for inflammatory, pathogenic, and autoimmune markers for infectious and autoimmune diseases, (2) amplified immunoassays for detection of cancer biomarkers, and (3) methods for targeted therapy and automatically adjusted drug delivery such as in experimental stroke and brain injury studies. As nanoproteomics becomes available both to the clinician at the bedside and the citizens who are increasingly interested in access to novel post-genomics diagnostics through initiatives such as the quantified self, we anticipate further breakthroughs in personalized and targeted medicine. PMID:24410486

  14. Tracing "Ethical Subjectivities" in Science Education: How Biology Textbooks Can Frame Ethico-Political Choices for Students

    ERIC Educational Resources Information Center

    Bazzul, Jesse

    2015-01-01

    This article describes how biology textbooks can work to discursively constitute a particular kind of "ethical subjectivity." Not only do textbooks constrain the possibilities for thought and action regarding ethical issues, they also require a certain kind of "subject" to partake in ethical exercises and questions. This study…

  15. Consideration and Checkboxes: Incorporating Ethics and Science into the 3Rs

    PubMed Central

    Landi, Margaret S; Shriver, Adam J; Mueller, Anne

    2015-01-01

    Members of the research community aim to both produce high-quality research and ensure that harm is minimized in animals. The primary means of ensuring these goals are both met is the 3Rs framework of replacement, reduction, and refinement. However, some approaches to the 3Rs may result in a ‘check box mentality’ in which IACUC members, researchers, administrators, and caretakers check off a list of tasks to evaluate a protocol. We provide reasons for thinking that the 3Rs approach could be enhanced with more explicit discussion of the ethical assumptions used to arrive at an approved research protocol during IACUC review. Here we suggest that the notion of moral considerability, and all of the related issues it gives rise to, should be incorporated into IACUC discussions of 3Rs deliberations during protocol review to ensure that animal wellbeing is enhanced within the constraints of scientific investigation. PMID:25836970

  16. Consideration and checkboxes: incorporating ethics and science into the 3Rs.

    PubMed

    Landi, Margaret S; Shriver, Adam J; Mueller, Anne

    2015-03-01

    Members of the research community aim to both produce high-quality research and ensure that harm is minimized in animals. The primary means of ensuring these goals are both met is the 3Rs framework of replacement, reduction, and refinement. However, some approaches to the 3Rs may result in a 'check box mentality' in which IACUC members, researchers, administrators, and caretakers check off a list of tasks to evaluate a protocol. We provide reasons for thinking that the 3Rs approach could be enhanced with more explicit discussion of the ethical assumptions used to arrive at an approved research protocol during IACUC review. Here we suggest that the notion of moral considerability, and all of the related issues it gives rise to, should be incorporated into IACUC discussions of 3Rs deliberations during protocol review to ensure that animal wellbeing is enhanced within the constraints of scientific investigation. PMID:25836970

  17. Consideration and checkboxes: incorporating ethics and science into the 3Rs.

    PubMed

    Landi, Margaret S; Shriver, Adam J; Mueller, Anne

    2015-03-01

    Members of the research community aim to both produce high-quality research and ensure that harm is minimized in animals. The primary means of ensuring these goals are both met is the 3Rs framework of replacement, reduction, and refinement. However, some approaches to the 3Rs may result in a 'check box mentality' in which IACUC members, researchers, administrators, and caretakers check off a list of tasks to evaluate a protocol. We provide reasons for thinking that the 3Rs approach could be enhanced with more explicit discussion of the ethical assumptions used to arrive at an approved research protocol during IACUC review. Here we suggest that the notion of moral considerability, and all of the related issues it gives rise to, should be incorporated into IACUC discussions of 3Rs deliberations during protocol review to ensure that animal wellbeing is enhanced within the constraints of scientific investigation.

  18. Human genome research and the public interest: Progress notes from an American Science Policy Experiment

    SciTech Connect

    Juengst, E.T. )

    1994-01-01

    This essay reviews the efforts of the US Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the DOE, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practical standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs. 47 refs.

  19. Genome Science: A Video Tour of the Washington University Genome Sequencing Center for High School and Undergraduate Students

    ERIC Educational Resources Information Center

    Flowers, Susan K.; Easter, Carla; Holmes, Andrea; Cohen, Brian; Bednarski, April E.; Mardis, Elaine R.; Wilson, Richard K.; Elgin, Sarah C. R.

    2005-01-01

    Sequencing of the human genome has ushered in a new era of biology. The technologies developed to facilitate the sequencing of the human genome are now being applied to the sequencing of other genomes. In 2004, a partnership was formed between Washington University School of Medicine Genome Sequencing Center's Outreach Program and Washington…

  20. Fitness for work in health care workers from the prospective of ethics, science and good practices.

    PubMed

    Alessio, L; Arici, Cecilia; Franco, G

    2012-01-01

    Fitness for work (FFW) is the final task of both risk assessment and health surveillance, aimed at protecting workers' health and working capacity. There are numerous specific concerns regarding health care workers. In particular: i) the frequent difficulty in determining at pre-employment/pre-placement examinations the specific task that the individual worker will perform; ii) the prevalence of female workers and the contemporary presence of numerous occupational risk factors that are a potential cause of harmful effects on women's reproductive health; iii) the progressive aging of the staff especially nurses; iv) the risk to third parties, with particular reference to the issues of biological risk and substance abuse, also in relation to shift work, fatigue and occupational stress; v) the increasing number of immigrant workers among support staff In such cases the occupational physician, respecting both ethical principles and regulations and with an appropriate balance between scientific evidence and the precautionary principle, should express a FFW judgment that allows both the adaptation of work to the worker and vice versa, as recommended by the World Health Organization (WHO) and the International Commission on Occupational Health (ICOH). Proper FFW judgment also permits the expected benefits to be achieved, not only for the workers but also for employers, companies and society.

  1. Luxury Primary Care, Academic Medical Centers, and the Erosion of Science and Professional Ethics

    PubMed Central

    Donohoe, Martin

    2004-01-01

    Medical schools and teaching hospitals have been hit particularly hard by the financial crisis affecting health care in the United States. To compete financially, many academic medical centers have recruited wealthy foreign patients and established luxury primary care clinics. At these clinics, patients are offered tests supported by little evidence of their clinical and/or cost effectiveness, which erodes the scientific underpinnings of medical practice. Given widespread disparities in health, wealth, and access to care, as well as growing cynicism and dissatisfaction with medicine among trainees, the promotion by these institutions of an overt, two-tiered system of care, which exacerbates inequities and injustice, erodes professional ethics. Academic medical centers should divert their intellectual and financial resources away from luxury primary care and toward more equitable and just programs designed to promote individual, community, and global health. The public and its legislators should, in turn, provide adequate funds to enable this. Ways for academic medicine to facilitate this largesse are discussed. PMID:14748866

  2. Computer science security research and human subjects: emerging considerations for research ethics boards.

    PubMed

    Buchanan, Elizabeth; Aycock, John; Dexter, Scott; Dittrich, David; Hvizdak, Erin

    2011-06-01

    This paper explores the growing concerns with computer science research, and in particular, computer security research and its relationship with the committees that review human subjects research. It offers cases that review boards are likely to confront, and provides a context for appropriate consideration of such research, as issues of bots, clouds, and worms enter the discourse of human subjects review.

  3. Science, ethics, and the historical roots of our ecological crisis - was White right?

    Technology Transfer Automated Retrieval System (TEKTRAN)

    In 1967 historian Lynn White Jr. suggested that values developed and perpetuated by Christian theology permeate Western science and technology and are responsible for human's seemingly continuous abuse of the environment. Our failure to solve environmental problems is due to a belief that humans are...

  4. Eyes wide open: the personal genome project, citizen science and veracity in informed consent.

    PubMed

    Angrist, Misha

    2009-11-01

    I am a close observer of the Personal Genome Project (PGP) and one of the original ten participants. The PGP was originally conceived as a way to test novel DNA sequencing technologies on human samples and to begin to build a database of human genomes and traits. However, its founder, Harvard geneticist George Church, was concerned about the fact that DNA is the ultimate digital identifier - individuals and many of their traits can be identified. Therefore, he believed that promising participants privacy and confidentiality would be impractical and disingenuous. Moreover, deidentification of samples would impoverish both genotypic and phenotypic data. As a result, the PGP has arguably become best known for its unprecedented approach to informed consent. All participants must pass an exam testing their knowledge of genomic science and privacy issues and agree to forgo the privacy and confidentiality of their genomic data and personal health records. Church aims to scale up to 100,000 participants. This special report discusses the impetus for the project, its early history and its potential to have a lasting impact on the treatment of human subjects in biomedical research.

  5. Eyes wide open: the personal genome project, citizen science and veracity in informed consent

    PubMed Central

    Angrist, Misha

    2012-01-01

    I am a close observer of the Personal Genome Project (PGP) and one of the original ten participants. The PGP was originally conceived as a way to test novel DNA sequencing technologies on human samples and to begin to build a database of human genomes and traits. However, its founder, Harvard geneticist George Church, was concerned about the fact that DNA is the ultimate digital identifier – individuals and many of their traits can be identified. Therefore, he believed that promising participants privacy and confidentiality would be impractical and disingenuous. Moreover, deidentification of samples would impoverish both genotypic and phenotypic data. As a result, the PGP has arguably become best known for its unprecedented approach to informed consent. All participants must pass an exam testing their knowledge of genomic science and privacy issues and agree to forgo the privacy and confidentiality of their genomic data and personal health records. Church aims to scale up to 100,000 participants. This special report discusses the impetus for the project, its early history and its potential to have a lasting impact on the treatment of human subjects in biomedical research. PMID:22328898

  6. To Know or Not to Know? Integrating Ethical Aspects of Genomic Healthcare in the Education of Health Professionals

    ERIC Educational Resources Information Center

    Eriksen, Kathrine Krageskov

    2015-01-01

    Novel possibilities for employing genetic testing as part of the diagnostic process for a wide variety of diseases and conditions are emerging almost every day. This development brings prospects of more efficient treatment and prevention of serious and often lethal conditions. However, it also raises ethical questions concerning the issue of…

  7. Ethical Considerations of Information Professionals.

    ERIC Educational Resources Information Center

    Froehlich, Thomas J.

    1992-01-01

    Discusses ethical concerns of information science professionals from two viewpoints: concerns of practitioners and the information industry, including a prototype for ethical contexts and principles for ethical actions; and concerns of theoreticians and researchers, including system principles and ideological, political, and social frameworks.…

  8. The ReproGenomics Viewer: an integrative cross-species toolbox for the reproductive science community

    PubMed Central

    Darde, Thomas A.; Sallou, Olivier; Becker, Emmanuelle; Evrard, Bertrand; Monjeaud, Cyril; Le Bras, Yvan; Jégou, Bernard; Collin, Olivier; Rolland, Antoine D.; Chalmel, Frédéric

    2015-01-01

    We report the development of the ReproGenomics Viewer (RGV), a multi- and cross-species working environment for the visualization, mining and comparison of published omics data sets for the reproductive science community. The system currently embeds 15 published data sets related to gametogenesis from nine model organisms. Data sets have been curated and conveniently organized into broad categories including biological topics, technologies, species and publications. RGV's modular design for both organisms and genomic tools enables users to upload and compare their data with that from the data sets embedded in the system in a cross-species manner. The RGV is freely available at http://rgv.genouest.org. PMID:25883147

  9. Life Sciences Division and Center for Human Genome Studies. Annual report, 1991

    SciTech Connect

    Spitzmiller, D.; Bradbury, M.; Cram, S.

    1992-05-01

    This report summarizes the research and development activities of Los Alamos National Laboratories Life Sciences Division and biological aspects of the Center for Human Genome Studies for the calendar year 1991. Selected research highlights include: yeast artificial chromosome libraries from flow sorted human chromosomes 16 and 21; distances between the antigen binding sites of three murine antibody subclasses measured using neutron and x-ray scattering; NFCR 10th anniversary highlights; kinase-mediated differences found in the cell cycle regulation of normal and transformed cells; and detecting mutations that cause Gaucher`s disease by denaturing gradient gel electrophoresis. Project descriptions include: genomic structure and regulation, molecular structure, cytometry, cell growth and differentiation, radiation biology and carcinogenesis, and pulmonary biology.

  10. Workshop V: Cultural Perception and Bias/Science Practice and Ethics

    NASA Astrophysics Data System (ADS)

    Chuan, Kwek Leong; Lin, Jauyn Grace; Pierron-Bohnes, Veronique; Dawson, Silvina Ponce

    2015-12-01

    Despite the objectivity of science, the local work environment affects the daily activities of scientists. Differences in cultural perception can affect female scientists in the workplace directly. The pressure currently exerted on researchers, on the other hand, is altering how science is practiced and seems to affect women and men differently. In this paper we summarize the discussions that took place on this topic in Workshop V of the 5th IUPAP International Conference on Women in Physics. We present some of the results of the 2010 Global Survey of Physicists analyzed by region and data from France and Taiwan. We also include the recommendations that were formulated at the end of the workshop.

  11. Governing the moral economy: Animal engineering, ethics and the liberal government of science

    PubMed Central

    Harvey, Alison; Salter, Brian

    2012-01-01

    The preferred Western model for science governance has come to involve attending to the perspectives of the public. In practice, however, this model has been criticised for failing to promote democracy along participatory lines. We argue that contemporary approaches to science policy making demonstrate less the failure of democracy and more the success of liberal modes of government in adapting to meet new governance challenges. Using a case study of recent UK policy debates on scientific work mixing human and animal biological material, we show first how a ‘moral economy’ is brought into being as a regulatory domain and second how this domain is governed to align cultural with scientific values. We suggest that it is through these practices that the state assures its aspirations for enhancing individual and collective prosperity through technological advance are met. PMID:22507952

  12. Governing the moral economy: animal engineering, ethics and the liberal government of science.

    PubMed

    Harvey, Alison; Salter, Brian

    2012-07-01

    The preferred Western model for science governance has come to involve attending to the perspectives of the public. In practice, however, this model has been criticised for failing to promote democracy along participatory lines. We argue that contemporary approaches to science policy making demonstrate less the failure of democracy and more the success of liberal modes of government in adapting to meet new governance challenges. Using a case study of recent UK policy debates on scientific work mixing human and animal biological material, we show first how a 'moral economy' is brought into being as a regulatory domain and second how this domain is governed to align cultural with scientific values. We suggest that it is through these practices that the state assures its aspirations for enhancing individual and collective prosperity through technological advance are met.

  13. Enhancement, ethics and society: towards an empirical research agenda for the medical humanities and social sciences.

    PubMed

    Pickersgill, Martyn; Hogle, Linda

    2015-12-01

    For some time now, bioethicists have paid close attention to issues associated with 'enhancement'; specifically, the appropriate use and regulation of substances and artefacts understood by some to improve the functioning of human bodies beyond that associated with 'normal' function. Medical humanities scholars (aside from philosophers and lawyers) and social scientists have not been frequent participants in debates around enhancement, but could shine a bright light on the range of dilemmas and opportunities techniques of enhancement are purported to introduce. In this paper, we argue that empirical research into the notion and practice of enhancement is necessary and timely. Such work could fruitfully engage with-and further develop-existing conceptual repertoires within the medical humanities and social sciences in ways that would afford benefit to scholars in those disciplines. We maintain that empirical engagements could also provide important resources to bioethicists seeking to regulate new enhancements in ways that are sensitive to societal context and cultural difference. To this end, we outline an empirical agenda for the medical humanities and social sciences around enhancement, emphasising especially how science and technology studies could bring benefits to-and be benefitted by-research in this area. We also use the example of (pharmaceutical) cognitive enhancement to show how empirical studies of actual and likely enhancement practices can nuance resonant bioethical debates.

  14. Enhancement, ethics and society: towards an empirical research agenda for the medical humanities and social sciences

    PubMed Central

    Hogle, Linda

    2015-01-01

    For some time now, bioethicists have paid close attention to issues associated with ‘enhancement’; specifically, the appropriate use and regulation of substances and artefacts understood by some to improve the functioning of human bodies beyond that associated with ‘normal’ function. Medical humanities scholars (aside from philosophers and lawyers) and social scientists have not been frequent participants in debates around enhancement, but could shine a bright light on the range of dilemmas and opportunities techniques of enhancement are purported to introduce. In this paper, we argue that empirical research into the notion and practice of enhancement is necessary and timely. Such work could fruitfully engage with—and further develop—existing conceptual repertoires within the medical humanities and social sciences in ways that would afford benefit to scholars in those disciplines. We maintain that empirical engagements could also provide important resources to bioethicists seeking to regulate new enhancements in ways that are sensitive to societal context and cultural difference. To this end, we outline an empirical agenda for the medical humanities and social sciences around enhancement, emphasising especially how science and technology studies could bring benefits to—and be benefitted by—research in this area. We also use the example of (pharmaceutical) cognitive enhancement to show how empirical studies of actual and likely enhancement practices can nuance resonant bioethical debates. PMID:26260624

  15. 'Mind genomics': the experimental, inductive science of the ordinary, and its application to aspects of food and feeding.

    PubMed

    Moskowitz, Howard R

    2012-11-01

    The paper introduces the empirical science of 'mind genomics', whose objective is to understand the dimensions of ordinary, everyday experience, identify mind-set segments of people who value different aspects of that everyday experience, and then assign a new person to a mind-set by a statistically appropriate procedure. By studying different experiences using experimental design of ideas, 'mind genomics' constructs an empirical, inductive science of perception and experience, layer by layer. The ultimate objective of 'mind genomics' is a large-scale science of experience created using induction, with the science based upon emergent commonalities across many different types of daily experience. The particular topic investigated in the paper is the experience of healthful snacks, what makes a person 'want' them, and the dollar value of different sensory aspects of the healthful snack.

  16. The ethics of psychotherapy.

    PubMed

    Karasu, T B

    1980-12-01

    The author addresses the ethics of psychotherapy in terms of the interface between science and ethics, the goals of treatment, the therapeutic relationship, and special issues of confidentiality and therapist-patient sex. He considers the problems of multiple therapeutic modalities, dual allegiance of the therapist, the therapeutic use (and abuse) of power, and issues of dependency and suggests ways to maximize the clinician's exercise of ethical choices. Ethical dilemmas in psychotherapy are not entirely soluble; ultimately, the therapist, guided by his or her profession as a group, will be able to find answers to the complex problems that inevitably arise. PMID:7435705

  17. What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling

    PubMed Central

    2016-01-01

    Abstract This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. PMID:27523581

  18. [Ethical issues raised by direct-to-consumer personal genome analysis and whole body scans: discussion and contextualisation of a report by the Nuffield Council on Bioethics].

    PubMed

    Buyx, Alena M; Strech, Daniel; Schmidt, Harald

    2012-01-01

    The paradigm of personalised medicine has many different facets, further to the application of pharmacogenetics. We examine here (direct-to-consumer) personal genome analysis and whole body scans and summarise findings from the Nuffield Council's on Bioethics recent report "Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age". We describe the current situation in Germany with regard to access to such services, and contextualise the Nuffield Council's report with summaries of position statements by German professional bodies. We conclude with three points that merit examination further to the analyses of the Nuffield Council's report and the German professional bodies. These concern the role of indirect evidence in considering restrictive policies, the question of whether regulations should require commercial providers to contribute to the generation of better evidence, and the option of using data from evaluations in combination with indirect evidence in justifying restrictive policies.

  19. Human impact on the planet: an earth system science perspective and ethical considerations

    USGS Publications Warehouse

    Williams, Richard S.

    2002-01-01

    natural and human history to stop further degradation of Earth?s ecosystems and extinction of its biota? The fate of the biosphere, including humanity, depends on a reaffirmation by all humans of all cultures and religions of the global importance of a planet-wide conservation of the Earth?s biotic heritage. For the world?s religions it means elevation of stewardship of the Earth to a moral imperative and a goal of complete preservation of the Earth?s biotic inheritance, one which is based on a Do No Harm ethic.

  20. Bioethics Symposium: The ethical food movement: What does it mean for the role of science and scientists in current debates about animal agriculture?

    PubMed

    Croney, C C; Apley, M; Capper, J L; Mench, J A; Priest, S

    2012-05-01

    Contemporary animal agriculture is increasingly criticized on ethical grounds. Consequently, current policy and legislative discussions have become highly controversial as decision makers attempt to reconcile concerns about the impacts of animal production on animal welfare, the environment, and on the efficacy of antibiotics required to ensure human health with demands for abundant, affordable, safe food. Clearly, the broad implications for US animal agriculture of what appears to be a burgeoning movement relative to ethical food production must be understood by animal agriculture stakeholders. The potential effects of such developments on animal agricultural practices, corporate marketing strategies, and public perceptions of the ethics of animal production must also be clarified. To that end, it is essential to acknowledge that people's beliefs about which food production practices are appropriate are tied to diverse, latent value systems. Thus, relying solely on scientific information as a means to resolve current debates about animal agriculture is unlikely to be effective. The problem is compounded when scientific information is used inappropriately or strategically to advance a political agenda. Examples of the interface between science and ethics in regards to addressing currently contentious aspects of food animal production (animal welfare, antimicrobial use, and impacts of animal production practices on the environment) are reviewed. The roles of scientists and science in public debates about animal agricultural practices are also examined. It is suggested that scientists have a duty to contribute to the development of sound policy by providing clear and objectively presented information, by clarifying misinterpretations of science, and by recognizing the differences between presenting data vs. promoting their own value judgments in regard to how and which data should be used to establish policy. Finally, the role of the media in shaping public opinions

  1. Bioethics Symposium: The ethical food movement: What does it mean for the role of science and scientists in current debates about animal agriculture?

    PubMed

    Croney, C C; Apley, M; Capper, J L; Mench, J A; Priest, S

    2012-05-01

    Contemporary animal agriculture is increasingly criticized on ethical grounds. Consequently, current policy and legislative discussions have become highly controversial as decision makers attempt to reconcile concerns about the impacts of animal production on animal welfare, the environment, and on the efficacy of antibiotics required to ensure human health with demands for abundant, affordable, safe food. Clearly, the broad implications for US animal agriculture of what appears to be a burgeoning movement relative to ethical food production must be understood by animal agriculture stakeholders. The potential effects of such developments on animal agricultural practices, corporate marketing strategies, and public perceptions of the ethics of animal production must also be clarified. To that end, it is essential to acknowledge that people's beliefs about which food production practices are appropriate are tied to diverse, latent value systems. Thus, relying solely on scientific information as a means to resolve current debates about animal agriculture is unlikely to be effective. The problem is compounded when scientific information is used inappropriately or strategically to advance a political agenda. Examples of the interface between science and ethics in regards to addressing currently contentious aspects of food animal production (animal welfare, antimicrobial use, and impacts of animal production practices on the environment) are reviewed. The roles of scientists and science in public debates about animal agricultural practices are also examined. It is suggested that scientists have a duty to contribute to the development of sound policy by providing clear and objectively presented information, by clarifying misinterpretations of science, and by recognizing the differences between presenting data vs. promoting their own value judgments in regard to how and which data should be used to establish policy. Finally, the role of the media in shaping public opinions

  2. John Gregory (1724-1773) and his lectures on the duties and qualifications of a physician establishing modern medical ethics on the base of the moral philosophy and the theory of science of the empiric British Enlightenment.

    PubMed

    Strätling, M

    1997-01-01

    In 1769/70 the Scottish physician and philosopher John Gregory (1724-1773) published Lectures On the Duties and Qualifications of a Physician. Gregory developed a truely ethical - in the sense of (moral) philosophically based - system of conduct in a physician. His concept of practising and teaching ethics in medicine and science is established on a very broad footing: combining Bacon's (1561-1626) general philosophy of nature and science with both, the general, likewise empirically based moral philosophy of his personal friend David Hume (1711-1776), and with the principles upheld by the so-called Common-Sense Philosophy. His Lectures had - particularly via the famous Code of Medical Ethics of Thomas Percival (1740-1804) - a decisive influence on our contemporary concepts of ethics in medicine and science. John Gregory is, without doubt, one of the most important and certainly the most comprehensive among the founders of what is known today as modern Bioethics.

  3. Teaching Anthropogenic Climate Change through Interdisciplinary Collaboration: Helping Students Think Critically about Science and Ethics in Dialogue

    ERIC Educational Resources Information Center

    Todd, Claire; O'Brien, Kevin J.

    2016-01-01

    Anthropogenic climate change is a complicated issue involving scientific data and analyses as well as political, economic, and ethical issues. In order to capture this complexity, we developed an interdisciplinary student and faculty collaboration by (1) offering introductory lectures on scientific and ethical methods to two classes, (2) assigning…

  4. Science communication in transition: genomics hype, public engagement, education and commercialization pressures.

    PubMed

    Bubela, T

    2006-11-01

    This essay reports on the final session of a 2-day workshop entitled 'Genetic Diversity and Science Communication', hosted by the CIHR Institute of Genetics in Toronto, April 2006. The first speaker, Timothy Caulfield, introduced the intersecting communities that promulgate a 'cycle of hype' of the timelines and expected outcomes of the Human Genome Project (HGP): scientists, the media and the public. Other actors also contribute to the overall hype, the social science and humanities communities, industry and politicians. There currently appears to be an abatement of the overblown rhetoric of the HGP. As pointed out by the second speaker, Sharon Kardia, there is broad recognition that most phenotypic traits, including disease susceptibility are multi-factorial. That said, George Davey-Smith reminded us that some direct genotype-phenotype associations may be useful for public health issues. The Mendelian randomization approach hopes to revitalize the discipline of epidemiology by strengthening causal influences about environmentally modifiable risk factors. A more realistic informational environment paves the way for greater public engagement in science policy. Two such initiatives were presented by Kardia and Jason Robert, and Peter Finegold emphasized that science education and professional development for science teachers are important components of later public engagement in science issues. However, pressures on public research institutions to commercialize and seek industry funding may have negative impacts in both encouraging scientists to inappropriately hype research and on diminishing public trust in the scientific enterprise. The latter may have a significant effect on public engagement processes, such as those proposed by Robert and Kardia.

  5. Empirical ethics, context-sensitivity, and contextualism.

    PubMed

    Musschenga, Albert W

    2005-10-01

    In medical ethics, business ethics, and some branches of political philosophy (multi-culturalism, issues of just allocation, and equitable distribution) the literature increasingly combines insights from ethics and the social sciences. Some authors in medical ethics even speak of a new phase in the history of ethics, hailing "empirical ethics" as a logical next step in the development of practical ethics after the turn to "applied ethics." The name empirical ethics is ill-chosen because of its associations with "descriptive ethics." Unlike descriptive ethics, however, empirical ethics aims to be both descriptive and normative. The first question on which I focus is what kind of empirical research is used by empirical ethics and for which purposes. I argue that the ultimate aim of all empirical ethics is to improve the context-sensitivity of ethics. The second question is whether empirical ethics is essentially connected with specific positions in meta-ethics. I show that in some kinds of meta-ethical theories, which I categorize as broad contextualist theories, there is an intrinsic need for connecting normative ethics with empirical social research. But context-sensitivity is a goal that can be aimed for from any meta-ethical position. PMID:16282140

  6. Human Genome Project discoveries: Dialectics and rhetoric in the science of genetics

    NASA Astrophysics Data System (ADS)

    Robidoux, Charlotte A.

    The Human Genome Project (HGP), a $437 million effort that began in 1990 to chart the chemical sequence of our three billion base pairs of DNA, was completed in 2003, marking the 50th anniversary that proved the definitive structure of the molecule. This study considered how dialectical and rhetorical arguments functioned in the science, political, and public forums over a 20-year period, from 1980 to 2000, to advance human genome research and to establish the official project. I argue that Aristotle's continuum of knowledge--which ranges from the probable on one end to certified or demonstrated knowledge on the other--provides useful distinctions for analyzing scientific reasoning. While contemporary scientific research seeks to discover certified knowledge, investigators generally employ the hypothetico-deductive or scientific method, which often yields probable rather than certain findings, making these dialectical in nature. Analysis of the discourse describing human genome research revealed the use of numerous rhetorical figures and topics. Persuasive and probable reasoning were necessary for scientists to characterize unknown genetic phenomena, to secure interest in and funding for large-scale human genome research, to solve scientific problems, to issue probable findings, to convince colleagues and government officials that the findings were sound and to disseminate information to the public. Both government and private venture scientists drew on these tools of reasoning to promote their methods of mapping and sequencing the genome. The debate over how to carry out sequencing was rooted in conflicting values. Scientists representing the academic tradition valued a more conservative method that would establish high quality results, and those supporting private industry valued an unconventional approach that would yield products and profits more quickly. Values in turn influenced political and public forum arguments. Agency representatives and investors sided

  7. Review paper on research ethics in Ethiopia: experiences and lessons learnt from Addis Ababa University College of Health Sciences 2007-2012.

    PubMed

    Feleke, Yeweyenhareg; Addissie, Adamu; Wamisho, Biruk L; Davey, Gail

    2015-01-01

    Health research in Ethiopia is increasing both in volume and type, accompanied with expansion of higher education and research since the past few years. This calls for a proportional competence in the governance of medical research ethics in Ethiopia in the respective research and higher learning institutes. The paper highlights the evolution and progress ofthe ethics review at Addis Ababa University - College of Health Sciences (AAU-CHS) in the given context of health research review system in Ethiopia. Reflections are made on the key lessons to be drawnfrom the formative experiences of the Institutional Review Board (IRB) and their implications to the Ethiopian health research review system. This article is a review paper based on review of published and un published documents on research ethics in Ethiopia and the AAU-CHS (2007-2012). Thematic summaries of review findings are presented in thematic areas - formation of ethics review and key factors in the evolution of ethics review and implications. The IRB at AAU-CHS has been pivotal in providing review and follow-up for important clinical studies in Ethiopia. It has been one of the first IRBs to get WHO/SIDCER recognition from Africa and Ethiopia. Important factors in the successes of the IRB among others included leadership commitment, its placement in institutional structure, and continued capacity building. Financial challenges and sustainability issues need to be addressed for the sustained gains registered so far. Similar factors are considered important for the new and younger IRBs within the emergent Universities and research centers in the country.

  8. Information Ethics.

    ERIC Educational Resources Information Center

    Smith, Martha Montague

    1997-01-01

    Focuses on information ethics in scholarly and professional literature. Computer ethics, cyberethics, and the philosophies of information and information technology are also discussed. The recent use of the term global information ethics, suggesting the unification of many concerns common to information ethics, computer ethics, and cyberethics, is…

  9. The dual imperative in refugee research: some methodological and ethical considerations in social science research on forced migration.

    PubMed

    Jacobsen, Karen; Landau, Loren B

    2003-09-01

    Social scientists doing fieldwork in humanitarian situations often face a dual imperative: research should be both academically sound and policy relevant. We argue that much of the current research on forced migration is based on unsound methodology, and that the data and subsequent policy conclusions are often flawed or ethically suspect. This paper identifies some key methodological and ethical problems confronting social scientists studying forced migrants or their hosts. These problems include non-representativeness and bias, issues arising from working in unfamiliar contexts including translation and the use of local researchers, and ethical dilemmas including security and confidentiality issues and whether researchers are doing enough to 'do no harm'. The second part of the paper reviews the authors' own efforts to conduct research on urban refugees in Johannesburg. It concludes that while there is no single 'best practice' for refugee research, refugee studies would advance its academic and policy relevance by more seriously considering methodological and ethical concerns.

  10. HONOR IN SCIENCE -- SCIENCE ETHICS

    EPA Science Inventory

    On March 27, 2000 Carol Browner issued an all EPA employee e-mail memorandum concerning Principles of Scientific Integrity. - - - This booklet is an interesting educational source for determining what constitutes scientific misconduct which you may want to share with your associa...

  11. Ethical stockmanship.

    PubMed

    Hemsworth, P H

    2007-05-01

    The objective of this review is to consider the ethics of stockmanship, particularly from the perspective of the nature and extent of the duties of stockpeople to their farm animals. It will consider what science tells us about the impact of stockmanship on the animal, particularly the welfare of the farm animal. The effects of human-animal interactions on the stockperson will also be considered, since these interactions affect the work performance and job satisfaction of the stockperson and thus indirectly affect animal welfare. Animal ethics is broader than animal welfare and includes economic as well as philosophical, social, cultural and religious aspects. This paper is predicated on the view that farm animals can suffer, and that animal suffering is a key consideration in our moral obligations to animals. Housing and husbandry practices affect farm animal welfare and thus farmers and stockpeople have a responsibility to provide, at minimum, community-acceptable animal housing and husbandry standards for their animals. The farmer's or stockperson's attitudes and behaviour can directly affect the animal's welfare and thus they also have a responsibility to provide specific standards of stockmanship for these animals. However, research suggests that the behaviour of some stockpeople is not as correct as it might be. Such situations exemplify the inevitably unequal human - domestic animal relationship, and this inequality should be considered in analysing the boundary between right and wrong behaviour of humans. Thus ethical discussion, using science and other considerations and involving stockpeople, livestock industries, government and the general public, should be used to establish and assure acceptable stockperson competencies across the livestock industries. Training programs targeting the key attitudes and behaviour of stockpeople presently offer the livestock industries good opportunities to improve human-animal interactions. PMID:17470069

  12. Ethical stockmanship.

    PubMed

    Hemsworth, P H

    2007-05-01

    The objective of this review is to consider the ethics of stockmanship, particularly from the perspective of the nature and extent of the duties of stockpeople to their farm animals. It will consider what science tells us about the impact of stockmanship on the animal, particularly the welfare of the farm animal. The effects of human-animal interactions on the stockperson will also be considered, since these interactions affect the work performance and job satisfaction of the stockperson and thus indirectly affect animal welfare. Animal ethics is broader than animal welfare and includes economic as well as philosophical, social, cultural and religious aspects. This paper is predicated on the view that farm animals can suffer, and that animal suffering is a key consideration in our moral obligations to animals. Housing and husbandry practices affect farm animal welfare and thus farmers and stockpeople have a responsibility to provide, at minimum, community-acceptable animal housing and husbandry standards for their animals. The farmer's or stockperson's attitudes and behaviour can directly affect the animal's welfare and thus they also have a responsibility to provide specific standards of stockmanship for these animals. However, research suggests that the behaviour of some stockpeople is not as correct as it might be. Such situations exemplify the inevitably unequal human - domestic animal relationship, and this inequality should be considered in analysing the boundary between right and wrong behaviour of humans. Thus ethical discussion, using science and other considerations and involving stockpeople, livestock industries, government and the general public, should be used to establish and assure acceptable stockperson competencies across the livestock industries. Training programs targeting the key attitudes and behaviour of stockpeople presently offer the livestock industries good opportunities to improve human-animal interactions.

  13. Ethics: views from IACUC members.

    PubMed

    Houde, Lisa; Dumas, Claude; Leroux, Thérèse

    2009-07-01

    Institutional Animal Care and Use Committee (IACUC) members were interviewed on various ethical matters, including ethics, animal ethics, science and ethics, and the use of animals in research, in order to explore their implicit ethical framework. The results revealed that IACUC members entertain rich and diverse beliefs about ethics, that are part of an implicit ethical framework which relates to different domains of knowledge, such as biology (differences between human and animals), psychology (e.g. affective relationships with pets), and so on. The results also revealed that IACUC members hold quite a restrictive view on both animal ethics and animal use in research, and that they apply implicit ethical notions, such as respect and justice, to some elements (e.g. ethical rules) of the explicit ethical framework they are provided with when performing ethical evaluations of animal use. The study suggests that IACUC members should be provided with more up-to-date information on topics such as animal ethics and animal use in research.

  14. [Scientific ethics and the use of human material or data].

    PubMed

    Valenzuela, Carlos Y

    2012-03-01

    A scientific article censured by superposing obstacles to its reading remembers the censure of Galileo made by the Inquisition. The censure followed the failure to obtain the informed consent (IC) to disclose results of old samples. At present, the use of collected data or samples for a new research needs a new IC, in most ethical protocols. The Helsinki Code allows the research ethics committees the authorization for the use of that information. This norm is founded rather in commercial, legal or protective arguments than in ethical bases. This article criticizes this norm from the Scientific Ethics viewpoint because: i) the ownership of the genome and environment that originate a person is not of such person but of the human society and Homo sapiens species, ii) a person is not the unique owner of that information; laboratories, institutions, health services and research teams add constituents to it, iii) several violations to this norm occurring in medical, labor, legal and social practice show it as biased against science, iv) if this stored information and its use are beneficial for humankind (its proper owner) it is ethically obligatory to use it. It is proposed to create an anonymous World Bank for Human Information with open access and universal transparency. This universal collection of data handled under universal accepted ethical norms should prevent exclusive private use of public information, non-publication of negative results, illicit and unethical use of human data.

  15. [Animals and environmentalist ethics].

    PubMed

    Guichet, Jean-Luc

    2013-01-01

    While environmental ethics and animal ethics have a common source of inspiration, they do not agree on the question of the status of animals. Environmental ethicists criticise the narrowness of the reason, focused on pain, given by animal ethicists and their strictly individual point of view; they maintain that their ethical concept is less emotional and more informed by science, with a broad point of view taking natural networks into account. Animal ethicists respond critically, accusing the environmental ethicists of not having any ethical foundation. There are, however, prospects for reconciling the two approaches, provided that they recognise two different ethical stances for animals: one based on the integrity of wild animals and the other based on a model contract for tame animals.

  16. LLNL's Big Science Capabilities Help Spur Over $796 Billion in U.S. Economic Activity Sequencing the Human Genome

    SciTech Connect

    Stewart, Jeffrey S.

    2015-07-28

    LLNL’s successful history of taking on big science projects spans beyond national security and has helped create billions of dollars per year in new economic activity. One example is LLNL’s role in helping sequence the human genome. Over $796 billion in new economic activity in over half a dozen fields has been documented since LLNL successfully completed this Grand Challenge.

  17. Nutrition: ethics and social implications.

    PubMed

    Slamet-Loedin, Inez H; Jenie, Iumar A

    2007-01-01

    In October 2003, the general conference of UNESCO adopted the International Declaration on Human Genetic Data, followed by the adoption of the Universal Declaration on Bioethics and Human Rights in October 2005 to ensure the respect of human dignity and the protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data with the requirement of equality, justice and solidarity. Nutrigenomics studies the relationship between specific nutrients or diet and polymorphisms and gene expression; therefore, eventually diet can be tailored for each individual. The dietary intervention is based on collected human genetic data that eventually build knowledge of nutritional requirements, and the nutritional status of different human genotypes. This knowledge can be used to prevent, mitigate or cure chronic diseases. As in another branch of posthuman genome science, it is a global concern that the collected data should not be misused or create inequity. Some ethical issues raised and discussed in this paper are: (1) consent and confidentiality issues in the collection and storage of data, (2) genetic screening and how to prevent inequity, (3) regulatory oversight and in a wider context the need to improve public confidence in biotechnology-related science, (4) other social issues. The ethical issues in nutrigenomics need clear and concise guidelines developed in accordance with the universally adopted declarations and ethical concern needs to be integrated in the scientific design. Efforts to improve the public awareness, public participation and consultation need to be made at the early stage of the development of nutrigenomics. PMID:17684402

  18. 78 FR 8546 - National Center for Advancing Translational Sciences (NCATS) and National Human Genome Research...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-06

    ...) and National Human Genome Research Institute (NHGRI): Cooperative Research and Development Agreement... the National Human Genome Research Institute (NHGRI), the National Institutes of Health (NIH),...

  19. Lessons from Fraxinus, a crowd-sourced citizen science game in genomics

    PubMed Central

    Rallapalli, Ghanasyam; Saunders, Diane GO; Yoshida, Kentaro; Edwards, Anne; Lugo, Carlos A; Collin, Steve; Clavijo, Bernardo; Corpas, Manuel; Swarbreck, David; Clark, Matthew; Downie, J Allan; Kamoun, Sophien

    2015-01-01

    In 2013, in response to an epidemic of ash dieback disease in England the previous year, we launched a Facebook-based game called Fraxinus to enable non-scientists to contribute to genomics studies of the pathogen that causes the disease and the ash trees that are devastated by it. Over a period of 51 weeks players were able to match computational alignments of genetic sequences in 78% of cases, and to improve them in 15% of cases. We also found that most players were only transiently interested in the game, and that the majority of the work done was performed by a small group of dedicated players. Based on our experiences we have built a linear model for the length of time that contributors are likely to donate to a crowd-sourced citizen science project. This model could serve a guide for the design and implementation of future crowd-sourced citizen science initiatives. DOI: http://dx.doi.org/10.7554/eLife.07460.001 PMID:26219214

  20. Professional Ethics in Astronomy: The AAS Ethics Statement

    NASA Astrophysics Data System (ADS)

    Marvel, Kevin B.

    2013-01-01

    It is fundamental to the advancement of science that practicing scientists adhere to a consistent set of professional ethical principles. Recent violations of these principles have led a decreased trust in the process of science and scientific results. Although astronomy is less in the spotlight on these issues than medical science or climate change research, it is still incumbent on the field to follow sound scientific process guided by basic ethical guidelines. The American Astronomical Society, developed a set of such guidelines in 2010. This contribution summarizes the motivation and process by which the AAS Ethics Statement was produced.

  1. Forensic genetics and ethical, legal and social implications beyond the clinic

    PubMed Central

    Cho, Mildred K; Sankar, Pamela

    2008-01-01

    Data on human genetic variation help scientists to understand human origins, susceptibility to illness and genetic causes of disease. Destructive episodes in the history of genetic research make it crucial to consider the ethical and social implications of research in genomics, especially human genetic variation. The analysis of ethical, legal and social implications should be integrated into genetic research, with the participation of scientists who can anticipate and monitor the full range of possible applications of the research from the earliest stages. The design and implementation of research directs the ways in which its results can be used, and data and technology, rather than ethical considerations or social needs, drive the use of science in unintended ways. Here we examine forensic genetics and argue that all geneticists should anticipate the ethical and social issues associated with nonmedical applications of genetic variation research. PMID:15510102

  2. Attitudes toward Ethical Issues: A Survey of U.K. Reference Librarians and Schools of Librarianship and Information Science.

    ERIC Educational Resources Information Center

    Lonsdale, Dale; Oppenheim, Charles

    1995-01-01

    Discusses the results of a survey of academic reference librarians, library schools, and professional associations for information professionals in the United Kingdom that examined ethical issues in academic reference librarians' work, how professional associations relate to these matters, and how well library schools are preparing information…

  3. Using a Popular Science Nonfiction Book to Introduce Biomedical Research Ethics in a Biology Majors Course †

    PubMed Central

    Walton, Kristen L. W.

    2014-01-01

    Although bioethics is an important topic in modern society, it is not a required part of the curriculum for many biology degree programs in the United States. Students in our program are exposed to biologically relevant ethical issues informally in many classes, but we do not have a requirement for a separate bioethics course. The Immortal Life of Henrietta Lacks is a recent nonfiction book that describes the life of the woman whose cervical cancer biopsy gave rise to the HeLa cell line, as well as discussing relevant medical, societal, and ethical issues surrounding human tissue use for research. Weekly reading assignments from the book with discussion questions and a final paper were used to engage students in learning about the ethics of human subjects and human tissues research. Students were surveyed for qualitative feedback on the usefulness of including this book as part of the course. This book has been a successful platform for increasing student knowledge and interest in ethics related to biomedical and biological research. PMID:25574289

  4. FusX: A Rapid One-Step Transcription Activator-Like Effector Assembly System for Genome Science.

    PubMed

    Ma, Alvin C; McNulty, Melissa S; Poshusta, Tanya L; Campbell, Jarryd M; Martínez-Gálvez, Gabriel; Argue, David P; Lee, Han B; Urban, Mark D; Bullard, Cassandra E; Blackburn, Patrick R; Man, Toni K; Clark, Karl J; Ekker, Stephen C

    2016-06-01

    Transcription activator-like effectors (TALEs) are extremely effective, single-molecule DNA-targeting molecular cursors used for locus-specific genome science applications, including high-precision molecular medicine and other genome engineering applications. TALEs are used in genome engineering for locus-specific DNA editing and imaging, as artificial transcriptional activators and repressors, and for targeted epigenetic modification. TALEs as nucleases (TALENs) are effective editing tools and offer high binding specificity and fewer sequence constraints toward the targeted genome than other custom nuclease systems. One bottleneck of broader TALE use is reagent accessibility. For example, one commonly deployed method uses a multitube, 5-day assembly protocol. Here we describe FusX, a streamlined Golden Gate TALE assembly system that (1) is backward compatible with popular TALE backbones, (2) is functionalized as a single-tube 3-day TALE assembly process, (3) requires only commonly used basic molecular biology reagents, and (4) is cost-effective. More than 100 TALEN pairs have been successfully assembled using FusX, and 27 pairs were quantitatively tested in zebrafish, with each showing high somatic and germline activity. Furthermore, this assembly system is flexible and is compatible with standard molecular biology laboratory tools, but can be scaled with automated laboratory support. To demonstrate, we use a highly accessible and commercially available liquid-handling robot to rapidly and accurately assemble TALEs using the FusX TALE toolkit. Together, the FusX system accelerates TALE-based genomic science applications from basic science screening work for functional genomics testing and molecular medicine applications. PMID:26854857

  5. FusX: A Rapid One-Step Transcription Activator-Like Effector Assembly System for Genome Science

    PubMed Central

    Ma, Alvin C.; McNulty, Melissa S.; Poshusta, Tanya L.; Campbell, Jarryd M.; Martínez-Gálvez, Gabriel; Argue, David P.; Lee, Han B.; Urban, Mark D.; Bullard, Cassandra E.; Blackburn, Patrick R.; Man, Toni K.; Clark, Karl J.; Ekker, Stephen C.

    2016-01-01

    Transcription activator-like effectors (TALEs) are extremely effective, single-molecule DNA-targeting molecular cursors used for locus-specific genome science applications, including high-precision molecular medicine and other genome engineering applications. TALEs are used in genome engineering for locus-specific DNA editing and imaging, as artificial transcriptional activators and repressors, and for targeted epigenetic modification. TALEs as nucleases (TALENs) are effective editing tools and offer high binding specificity and fewer sequence constraints toward the targeted genome than other custom nuclease systems. One bottleneck of broader TALE use is reagent accessibility. For example, one commonly deployed method uses a multitube, 5-day assembly protocol. Here we describe FusX, a streamlined Golden Gate TALE assembly system that (1) is backward compatible with popular TALE backbones, (2) is functionalized as a single-tube 3-day TALE assembly process, (3) requires only commonly used basic molecular biology reagents, and (4) is cost-effective. More than 100 TALEN pairs have been successfully assembled using FusX, and 27 pairs were quantitatively tested in zebrafish, with each showing high somatic and germline activity. Furthermore, this assembly system is flexible and is compatible with standard molecular biology laboratory tools, but can be scaled with automated laboratory support. To demonstrate, we use a highly accessible and commercially available liquid-handling robot to rapidly and accurately assemble TALEs using the FusX TALE toolkit. Together, the FusX system accelerates TALE-based genomic science applications from basic science screening work for functional genomics testing and molecular medicine applications. PMID:26854857

  6. The Puzzle of Inheritance: Genetics and the Methods of Science.

    ERIC Educational Resources Information Center

    Cutter, Mary Ann G.; Drexler, Edward; Friedman, B. Ellen; McCullough, Laurence B.; McInerney, Joseph D.; Murray, Jeffrey C.; Rossiter, Belinda; Zola, John

    This instructional module contains a description of the Human Genome Project (HGP). A discussion of issues in the philosophy of science and some of the ethical, legal, and social implications of research in genetics, and a survey of fundamental genetics concepts and of new, nontraditional concepts of inheritance are also included. Six…

  7. A post-genomic surprise. The molecular reinscription of race in science, law and medicine.

    PubMed

    Duster, Troy

    2015-03-01

    The completion of the first draft of the Human Genome Map in 2000 was widely heralded as the promise and future of genetics-based medicines and therapies - so much so that pundits began referring to the new century as 'The Century of Genetics'. Moreover, definitive assertions about the overwhelming similarities of all humans' DNA (99.9 per cent) by the leaders of the Human Genome Project were trumpeted as the end of racial thinking about racial taxonomies of human genetic differences. But the first decade of the new century brought unwelcomed surprises. First, gene therapies turned out to be far more complicated than any had anticipated - and instead the pharmaceutical industry turned to a focus on drugs that might be 'related' to population differences based upon genetic markers. While the language of 'personalized medicine' dominated this frame, research on racially and ethnically designated populations differential responsiveness to drugs dominated the empirical work in the field. Ancestry testing and 'admixture research' would play an important role in a new kind of molecular reification of racial categories. Moreover, the capacity of the super-computer to map differences reverberated into personal identification that would affect both the criminal justice system and forensic science, and generate new levels of concern about personal privacy. Social scientists in general, and sociologists in particular, have been caught short by these developments - relying mainly on assertions that racial categories are socially constructed, regionally and historically contingent, and politically arbitrary. While these assertions are true, the imprimatur of scientific legitimacy has shifted the burden, since now 'admixture research' can claim that its results get at the 'reality' of human differentiation, not the admittedly flawed social constructions of racial categories. Yet what was missing from this framing of the problem: 'admixture research' is itself based upon socially

  8. A post-genomic surprise. The molecular reinscription of race in science, law and medicine.

    PubMed

    Duster, Troy

    2015-03-01

    The completion of the first draft of the Human Genome Map in 2000 was widely heralded as the promise and future of genetics-based medicines and therapies - so much so that pundits began referring to the new century as 'The Century of Genetics'. Moreover, definitive assertions about the overwhelming similarities of all humans' DNA (99.9 per cent) by the leaders of the Human Genome Project were trumpeted as the end of racial thinking about racial taxonomies of human genetic differences. But the first decade of the new century brought unwelcomed surprises. First, gene therapies turned out to be far more complicated than any had anticipated - and instead the pharmaceutical industry turned to a focus on drugs that might be 'related' to population differences based upon genetic markers. While the language of 'personalized medicine' dominated this frame, research on racially and ethnically designated populations differential responsiveness to drugs dominated the empirical work in the field. Ancestry testing and 'admixture research' would play an important role in a new kind of molecular reification of racial categories. Moreover, the capacity of the super-computer to map differences reverberated into personal identification that would affect both the criminal justice system and forensic science, and generate new levels of concern about personal privacy. Social scientists in general, and sociologists in particular, have been caught short by these developments - relying mainly on assertions that racial categories are socially constructed, regionally and historically contingent, and politically arbitrary. While these assertions are true, the imprimatur of scientific legitimacy has shifted the burden, since now 'admixture research' can claim that its results get at the 'reality' of human differentiation, not the admittedly flawed social constructions of racial categories. Yet what was missing from this framing of the problem: 'admixture research' is itself based upon socially

  9. Emerging issues in public health genomics.

    PubMed

    Roberts, J Scott; Dolinoy, Dana C; Tarini, Beth A

    2014-01-01

    This review highlights emerging areas of interest in public health genomics. First, we describe recent advances in newborn screening (NBS), with a focus on the practice and policy implications of current and future efforts to expand NBS programs (e.g., via next-generation sequencing). Next, we detail research findings from the rapidly progressing field of epigenetics and epigenomics, highlighting ways in which our emerging understanding in these areas could guide future intervention and research efforts in public health. We close by considering various ethical, legal, and social issues posed by recent developments in public health genomics; these include policies to regulate access to personal genomic information, the need to enhance genetic literacy in both health professionals and the public, and challenges in ensuring that the benefits (and burdens) of genomic discoveries and applications are equitably distributed. We also note needs for future genomic research that integrates across basic and social sciences.

  10. Emerging issues in public health genomics

    PubMed Central

    Roberts, J. Scott

    2014-01-01

    This review highlights emerging areas of interest in public health genomics. First, recent advances in newborn screening (NBS) are described, with a focus on practice and policy implications of current and future efforts to expand NBS programs (e.g., via next-generation sequencing). Next, research findings from the rapidly progressing field of epigenetics and epigenomics are detailed, highlighting ways in which our emerging understanding in these areas could guide future intervention and research efforts in public health. We close by considering various ethical, legal and social issues posed by recent developments in public health genomics; these include policies to regulate access to personal genomic information; the need to enhance genetic literacy in both health professionals and the public; and challenges in ensuring that the benefits (and burdens) from genomic discoveries and applications are equitably distributed. Needs for future genomics research that integrates across basic and social sciences are also noted. PMID:25184533

  11. Minitrack on data and knowledge base issues in genomics at the 27th Hawaii International Conference on system sciences

    SciTech Connect

    1995-05-01

    This report is a summary of the proceedings from the Minitrack on Data and Knowledge Base Issues in Genomics at the 27th Hawaii International Conference on System Science, January 4 - 7, 1994. The minitrack was organized by Dong-Guk Shin (University of Connecticut) and Francois Rechenmann (INRIA, France). Support was jointly provided by the NSF, NIH and DOE. The minitrack included, after rigorous review, ten full papers and four extended abstracts in the following five different research subareas of genome informatics: data modeling and management, sequence analysis, graphical user interface, interoperation in a heterogenous computing environment, and system integration in a knowledge-based approach.

  12. Ethics in Online Publications.

    PubMed

    Vervaart, Peter

    2014-10-01

    Journals have been publishing the results of scientific investigations since the founding of Philosophical Transactions in 1665. Since then we have witnessed a massive expansion in the number of journals to the point that there are now approximately 28,000 active, peer reviewed journals collectively publishing more than 1.8 million articles per year. Before the mid-1990s, these journals were only available on paper but by the end of the 20th century, most journals had moved to online platforms. Online publication has also served as the impetus for the move to 'open-access' to the information contained in journals. The fact that a publication is 'on-line' and 'open-access' does not negate the responsibility of the author and the publisher to publish in an ethical way. [1] The document produced by the IFCC Ethics Task Force (TF-E) on publication ethics states that 'Ethics in Science at its broadest level encompasses research ethics, medical ethics, publication ethics, conflicts of interest, ethical responsibilities as educator, plus many other areas.' Thus publication ethics is a continuum from the first step of research design through to the information being read by the reader. In general terms 'publication ethics' includes the ethical behaviour of the authors in writing and submitting a scientific manuscript to a publisher for the purpose of publication, thus any discussion of publication ethics must include the role of the authors, referees, publisher and reader and the issues of authorship (and the use of 'ghosts'), plagiarism, duplicate publication (including in different languages), image manipulation (particularly in the era of digitisation), and conflict of interest [2]. To aid the authors, and others involved in the process of publication, a number of resources are now available particularly those from the Committee on Publication Ethics (COPE) [3] and the World Association of Medical Editors (WAME) [4]. More recently the issue of 'publisher ethics' has

  13. Teaching Ethics in Junior High

    ERIC Educational Resources Information Center

    Norquist, Kathy

    2005-01-01

    Although the family has traditionally been the place for children to learn values, respect, and ethics, today family and consumer sciences (FACS) educators are required to deliver these types of lessons every day. The author of this brief article promotes the teaching of ethics in junior high school, believing that the emotional and physical…

  14. Professional Ethics for Astronomers

    NASA Astrophysics Data System (ADS)

    Marvel, K. B.

    2005-05-01

    There is a growing recognition that professional ethics is an important topic for all professional scientists, especially physical scientists. Situations at the National Laboratories have dramatically proven this point. Professional ethics is usually only considered important for the health sciences and the legal and medical professions. However, certain aspects of the day to day work of professional astronomers can be impacted by ethical issues. Examples include refereeing scientific papers, serving on grant panels or telescope allocation committees, submitting grant proposals, providing proper references in publications, proposals or talks and even writing recommendation letters for job candidates or serving on search committees. This session will feature several speakers on a variety of topics and provide time for questions and answers from the audience. Confirmed speakers include: Kate Kirby, Director Institute for Theoretical Atomic and Molecular Physics - Professional Ethics in the Physical Sciences: An Overview Rob Kennicutt, Astrophysical Journal Editor - Ethical Issues for Publishing Astronomers Peggy Fischer, Office of the NSF Inspector General - Professional Ethics from the NSF Inspector General's Point of View

  15. From Mendel to the Human Genome Project: The Implications for Nurse Education.

    ERIC Educational Resources Information Center

    Burton, Hilary; Stewart, Alison

    2003-01-01

    The Human Genome Project is brining new opportunities to predict and prevent diseases. Although pediatric nurses are the closest to these developments, most nurses will encounter genetic aspects of practice and must understand the basic science and its ethical, legal, and social dimensions. (Includes commentary by Peter Birchenall.) (SK)

  16. [Genetic individuality and the universal declaration on the human genome and human rights].

    PubMed

    Siqueiros, Jesús M; Saruwatari, Garbiñe; Oliva-Sánchez, Pablo Francisco

    2012-01-01

    In this article we explore the epistemic and ontological relationship between science and law through the concept of individual in the Universal Declaration of the Human Genome and Human Rights. We argue for a better understanding of this relationship in order to foresee ethical and social consequences derived from Law adopting concepts with a strong scientific meaning.

  17. Biobanks for Genomics and Genomics for Biobanks

    PubMed Central

    Ducournau, Pascal; Gourraud, Pierre-Antoine; Pontille, David

    2003-01-01

    Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With ‘large-scale biobanking’ a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society. PMID:18629026

  18. Genomic Advances to Improve Biomass for Biofuels (LBNL Science at the Theater)

    SciTech Connect

    Rokhsar, Daniel

    2008-02-11

    Lawrence Berkeley National Lab bioscientist Daniel Rokhsar discusses genomic advances to improve biomass for biofuels. He presented his talk Feb. 11, 2008 in Berkeley, California as part of Berkeley Lab's community lecture series. Rokhsar works with the U.S. Department of Energy's Joint Genome Institute and Berkeley Lab's Genomics Division.

  19. Genomic Advances to Improve Biomass for Biofuels (LBNL Science at the Theater)

    ScienceCinema

    Rokhsar, Daniel

    2016-07-12

    Lawrence Berkeley National Lab bioscientist Daniel Rokhsar discusses genomic advances to improve biomass for biofuels. He presented his talk Feb. 11, 2008 in Berkeley, California as part of Berkeley Lab's community lecture series. Rokhsar works with the U.S. Department of Energy's Joint Genome Institute and Berkeley Lab's Genomics Division.

  20. CRISPR-Cas: Revolutionising genome engineering.

    PubMed

    Nicholson, Samantha Anne; Pepper, Michael Sean

    2016-09-01

    The ability to permanently alter or repair the human genome has been the subject of a number of science fiction films, but with the recent advent of several customisable sequence-specific endonuclease technologies, genome engineering looks set to become a clinical reality in the near future. This article discusses recent advancements in the technology called 'clustered regularly interspaced palindromic repeat (CRISPR)-associated genes' (CRISPR-Cas), the potential of CRISPR-Cas to revolutionise molecular medicine, and the ethical and regulatory hurdles facing its application. PMID:27601107

  1. CRISPR-Cas: Revolutionising genome engineering.

    PubMed

    Nicholson, Samantha Anne; Pepper, Michael Sean

    2016-08-01

    The ability to permanently alter or repair the human genome has been the subject of a number of science fiction films, but with the recent advent of several customisable sequence-specific endonuclease technologies, genome engineering looks set to become a clinical reality in the near future. This article discusses recent advancements in the technology called 'clustered regularly interspaced palindromic repeat (CRISPR)-associated genes' (CRISPR-Cas), the potential of CRISPR-Cas to revolutionise molecular medicine, and the ethical and regulatory hurdles facing its application.

  2. Crowd-funded micro-grants for genomics and "big data": an actionable idea connecting small (artisan) science, infrastructure science, and citizen philanthropy.

    PubMed

    Özdemir, Vural; Badr, Kamal F; Dove, Edward S; Endrenyi, Laszlo; Geraci, Christy Jo; Hotez, Peter J; Milius, Djims; Neves-Pereira, Maria; Pang, Tikki; Rotimi, Charles N; Sabra, Ramzi; Sarkissian, Christineh N; Srivastava, Sanjeeva; Tims, Hesther; Zgheib, Nathalie K; Kickbusch, Ilona

    2013-04-01

    Biomedical science in the 21(st) century is embedded in, and draws from, a digital commons and "Big Data" created by high-throughput Omics technologies such as genomics. Classic Edisonian metaphors of science and scientists (i.e., "the lone genius" or other narrow definitions of expertise) are ill equipped to harness the vast promises of the 21(st) century digital commons. Moreover, in medicine and life sciences, experts often under-appreciate the important contributions made by citizen scholars and lead users of innovations to design innovative products and co-create new knowledge. We believe there are a large number of users waiting to be mobilized so as to engage with Big Data as citizen scientists-only if some funding were available. Yet many of these scholars may not meet the meta-criteria used to judge expertise, such as a track record in obtaining large research grants or a traditional academic curriculum vitae. This innovation research article describes a novel idea and action framework: micro-grants, each worth $1000, for genomics and Big Data. Though a relatively small amount at first glance, this far exceeds the annual income of the "bottom one billion"-the 1.4 billion people living below the extreme poverty level defined by the World Bank ($1.25/day). We describe two types of micro-grants. Type 1 micro-grants can be awarded through established funding agencies and philanthropies that create micro-granting programs to fund a broad and highly diverse array of small artisan labs and citizen scholars to connect genomics and Big Data with new models of discovery such as open user innovation. Type 2 micro-grants can be funded by existing or new science observatories and citizen think tanks through crowd-funding mechanisms described herein. Type 2 micro-grants would also facilitate global health diplomacy by co-creating crowd-funded micro-granting programs across nation-states in regions facing political and financial instability, while sharing similar disease

  3. Crowd-funded micro-grants for genomics and "big data": an actionable idea connecting small (artisan) science, infrastructure science, and citizen philanthropy.

    PubMed

    Özdemir, Vural; Badr, Kamal F; Dove, Edward S; Endrenyi, Laszlo; Geraci, Christy Jo; Hotez, Peter J; Milius, Djims; Neves-Pereira, Maria; Pang, Tikki; Rotimi, Charles N; Sabra, Ramzi; Sarkissian, Christineh N; Srivastava, Sanjeeva; Tims, Hesther; Zgheib, Nathalie K; Kickbusch, Ilona

    2013-04-01

    Biomedical science in the 21(st) century is embedded in, and draws from, a digital commons and "Big Data" created by high-throughput Omics technologies such as genomics. Classic Edisonian metaphors of science and scientists (i.e., "the lone genius" or other narrow definitions of expertise) are ill equipped to harness the vast promises of the 21(st) century digital commons. Moreover, in medicine and life sciences, experts often under-appreciate the important contributions made by citizen scholars and lead users of innovations to design innovative products and co-create new knowledge. We believe there are a large number of users waiting to be mobilized so as to engage with Big Data as citizen scientists-only if some funding were available. Yet many of these scholars may not meet the meta-criteria used to judge expertise, such as a track record in obtaining large research grants or a traditional academic curriculum vitae. This innovation research article describes a novel idea and action framework: micro-grants, each worth $1000, for genomics and Big Data. Though a relatively small amount at first glance, this far exceeds the annual income of the "bottom one billion"-the 1.4 billion people living below the extreme poverty level defined by the World Bank ($1.25/day). We describe two types of micro-grants. Type 1 micro-grants can be awarded through established funding agencies and philanthropies that create micro-granting programs to fund a broad and highly diverse array of small artisan labs and citizen scholars to connect genomics and Big Data with new models of discovery such as open user innovation. Type 2 micro-grants can be funded by existing or new science observatories and citizen think tanks through crowd-funding mechanisms described herein. Type 2 micro-grants would also facilitate global health diplomacy by co-creating crowd-funded micro-granting programs across nation-states in regions facing political and financial instability, while sharing similar disease

  4. Ethical Revision.

    ERIC Educational Resources Information Center

    Jackman, Mary Kathryn

    1994-01-01

    Discusses the dilemma of how to respond to student papers advancing morally repugnant positions. Advocates conceptualizing writing as an ethical act and connecting ethics and revision. Describes briefly how three such student papers were handled. (SR)

  5. Advance directives: binding or merely indicative? Incoherence of the Portuguese National Council of Ethics for the Life Sciences and insufficiencies of newly proposed regulation.

    PubMed

    Pereira, André

    2009-06-01

    The Portuguese National Council of Ethics for the Life Sciences issued in 2005 two important Opinions concerning persistent vegetative state (PVS) and refusal of blood transfusions. The first one advocated that advance directives should be respected; however, the second Opinion considered them "merely indicative." The different opinions of the National Council of Ethics reflect the difficulty of this matter. Portugal ratified the Convention on Human Rights and Biomedicine, which states that advance directives "should be taken into consideration" (Art. 9) and in order to regulate this generic rule, the Portuguese Association on Bioethics proposed to the Parliament a draft-law, which aims to legalize advance directives (including "living will" and "health-care proxy") and establish a National Registry of Advance Directives. This proposal dearly states that advance directives should be binding. However, some regulatory aspects, concerning the procedure that leads to the validity of a living will deserve further discussion. The Author argues in favour of a previous medical interview and a solemn formality in the case of binding advance directives, in order to assure the freedom and information of the refusal of treatment.

  6. How the Pernkopf controversy facilitated a historical and ethical analysis of the anatomical sciences in Austria and Germany: a recommendation for the continued use of the Pernkopf atlas.

    PubMed

    Hildebrandt, Sabine

    2006-03-01

    Eduard Pernkopf's Topographical Anatomy of Man has been a widely used standard work of anatomy for over sixty years. International inquiries about the National Socialist (NS) political background of Eduard Pernkopf and the use of bodies of NS victims for the atlas were first directed at the University of Vienna in 1996. A public discussion about the further use of the book followed and led to the creation of the Senatorial Project of the University of Vienna in 1997. This historical research project confirmed the strong NS affiliation of Pernkopf and revealed the delivery of at least 1,377 bodies of executed persons to the Anatomical Institute of Vienna during the NS time. The possible use of these bodies as models cannot be excluded for up to half of the approximately 800 plates in the atlas. In addition tissue specimens from NS victims were found and removed from the collections of the Viennese Medical School and received a burial in a grave of honor. The Pernkopf controversy facilitated the historical and ethical analysis of the anatomical sciences in Austria and Germany during the NS regime. The continued use of the Pernkopf atlas is not only justifiable but desirable as a tool in the teaching of anatomy, history, and ethics.

  7. Ethical Inspection about laboratory animals.

    PubMed

    Yang, Nai-bin; Pan, Xiao-jun; Cheng, Jing-jing; Lin, Jia-qiang; Zhu, Jia-yin

    2015-11-01

    Laboratory animals and animal experiments are foundations and important support conditions for life sciences, especially for medical research. The animal experiments have drawn extensive attention from the society because of the ethical issue. This paper takes Wenzhou Medical University as an example to give a brief introduction to the ethical review about laboratory animals in the university so as to further draw attention and concerns from the public about the ethical issue of laboratory animals. We successively introduce its scientific projects, nurturing environment and ethical review of laboratory animals.

  8. Ethical Inspection about laboratory animals.

    PubMed

    Yang, Nai-bin; Pan, Xiao-jun; Cheng, Jing-jing; Lin, Jia-qiang; Zhu, Jia-yin

    2015-11-01

    Laboratory animals and animal experiments are foundations and important support conditions for life sciences, especially for medical research. The animal experiments have drawn extensive attention from the society because of the ethical issue. This paper takes Wenzhou Medical University as an example to give a brief introduction to the ethical review about laboratory animals in the university so as to further draw attention and concerns from the public about the ethical issue of laboratory animals. We successively introduce its scientific projects, nurturing environment and ethical review of laboratory animals. PMID:27215017

  9. Bioethics: Research, Action and Ethics

    ERIC Educational Resources Information Center

    Castleman, Nancy

    1974-01-01

    Alerts science teachers to ethical and social issues as well as research findings associated with recent developments in biomedicine. Also provides a brief list of suggested readings on bioethical issues. (PEB)

  10. Ethical Impotence

    ERIC Educational Resources Information Center

    Sternberg, Robert J.

    2015-01-01

    Ethical impotence occurs when one wants to act ethically but feels powerless to do anything about the perceived unethical behavior. One may feel that one's actions will have no impact or that those actions actually will have harmful consequences to oneself and/or others. Ethical impotence can be understood in terms of an eight-step model of…

  11. The Einstein Genome Gateway using WASP - a high throughput multi-layered life sciences portal for XSEDE.

    PubMed

    Golden, Aaron; McLellan, Andrew S; Dubin, Robert A; Jing, Qiang; O Broin, Pilib; Moskowitz, David; Zhang, Zhengdong; Suzuki, Masako; Hargitai, Joseph; Calder, R Brent; Greally, John M

    2012-01-01

    Massively-parallel sequencing (MPS) technologies and their diverse applications in genomics and epigenomics research have yielded enormous new insights into the physiology and pathophysiology of the human genome. The biggest hurdle remains the magnitude and diversity of the datasets generated, compromising our ability to manage, organize, process and ultimately analyse data. The Wiki-based Automated Sequence Processor (WASP), developed at the Albert Einstein College of Medicine (hereafter Einstein), uniquely manages to tightly couple the sequencing platform, the sequencing assay, sample metadata and the automated workflows deployed on a heterogeneous high performance computing cluster infrastructure that yield sequenced, quality-controlled and 'mapped' sequence data, all within the one operating environment accessible by a web-based GUI interface. WASP at Einstein processes 4-6 TB of data per week and since its production cycle commenced it has processed ~ 1 PB of data overall and has revolutionized user interactivity with these new genomic technologies, who remain blissfully unaware of the data storage, management and most importantly processing services they request. The abstraction of such computational complexity for the user in effect makes WASP an ideal middleware solution, and an appropriate basis for the development of a grid-enabled resource - the Einstein Genome Gateway - as part of the Extreme Science and Engineering Discovery Environment (XSEDE) program. In this paper we discuss the existing WASP system, its proposed middleware role, and its planned interaction with XSEDE to form the Einstein Genome Gateway.

  12. Computer ethics: A capstone course

    SciTech Connect

    Fisher, T.G.; Abunawass, A.M.

    1994-12-31

    This paper presents a capstone course on computer ethics required for all computer science majors in our program. The course was designed to encourage students to evaluate their own personal value systems in terms of the established values in computer science as represented by the ACM Code of Ethics. The structure, activities, and topics of the course as well as assessment of the students are presented. Observations on various course components and student evaluations of the course are also presented.

  13. [Medical ethics as professional ethics].

    PubMed

    Kwon, Ivo

    2012-09-25

    Contemporary medical ethics is far from the traditional concept of "In-Sul (benevolent art)" or "Yul-Li (倫, ethics), which emphasizes so much the personality or the character of a doctor. Nowadays, medical ethics should be considered as "professional ethics" which regulates the acts and medical practices of ordinary doctors in their daily practice. The key concepts of the professional ethics are "autonomy", "integrity", and "professional standard" established by medical organizations such as medical societies or associations. Most of Korean doctors have not been familiar with the concept of professional ethics or professionalism, which is due to the modern history of Korea. However, the concept of professional ethics is really critical to Korean doctors from the perspective of professional dignity and social respect to this profession. The current healthcare system of Korea is suffering from many problems of both private and public sector. Nonetheless, the professional ethics is urgently demanded for that very reason.

  14. Genome sequences of Bacteria and Archaea published outside of Standards in Genomic Sciences, June – September 2011

    PubMed Central

    Nelson, Oranmiyan W.; Garrity, George M.

    2011-01-01

    The purpose of this table is to provide the community with a citable record of publications of ongoing genome sequencing projects that have led to a publication in the scientific literature. While our goal is to make the list complete, there is no guarantee that we may have omitted one or more publications appearing in this time frame. Readers and authors who wish to have publications added to this subsequent versions of this list are invited to provide the bibliometric data for such references to the SIGS editorial office.

  15. The Teaching of Ethics. Vol. 1-9.

    ERIC Educational Resources Information Center

    1980

    The state of ethics teaching at the undergraduate and professional school levels is examined in these comprehensive monographs sponsored by the Institute of Society, Ethics and the Life Sciences/The Hastings Center. "The Teaching of Ethics in Higher Education (I)" encompasses: (1) the number and extent of courses in ethics, (2) the status and…

  16. Proteomics, genomics and the future of medical education.

    PubMed

    Pike, Linda J; Sadler, J Evan

    2004-01-01

    The completion of the human genome project in 2003 ushered in the era of genomics, the systematic study of our DNA sequence. Proteomics, the study of the full complement of proteins present in a cell, is a natural extension of genomics. Together, the information obtainable through genomics and proteomics has tremendous potential to change clinical practice. The application of such information to medical diagnosis and treatment will require significant changes in the training of physicians. All students and physicians in training will need to acquire enough knowledge of the underlying science, including medical genetics, epidemiology, bioinformatics and statistics, so they will intuitively understand the technology and recognize the strengths and limitations of genomic/proteomic tests. Because genomic or proteomic testing may yield extensive information about a person's genetic makeup and disease risks, consideration will need to be given throughout the medical curriculum to the ethical issues raised by the application of this new technology to the diagnosis and treatment of patients.

  17. Ethical Questions and Biologists.

    ERIC Educational Resources Information Center

    Franke, Robert G.

    1983-01-01

    A three-part questionnaire was used to assess degree of emphasis given to values education in college biology. In addition to demographic data, the questionnaire, mailed to 377 biologists (185 forms returned), included items focusing on the significance of ethical issues and when life-science related values are best introduced to students. (JN)

  18. Ethics without Indoctrination.

    ERIC Educational Resources Information Center

    Paul, Richard W.

    1988-01-01

    To bring ethics into the curriculum without indoctrinating students with adults' moral incapacities, distortions, and closed-mindedness, educators need to integrate eithics with critical thinking, literature, science, history, and civics instruction. Implementation requires excellent supplemental resources, good leadership, and inservice redesign.…

  19. Omics and Environmental Science Genomic Approaches With Natural Fish Populations From Polluted Environments

    PubMed Central

    Bozinovic, Goran; Oleksiak, Marjorie F.

    2010-01-01

    Transcriptomics and population genomics are two complementary genomic approaches that can be used to gain insight into pollutant effects in natural populations. Transcriptomics identify altered gene expression pathways while population genomics approaches more directly target the causative genomic polymorphisms. Neither approach is restricted to a pre-determined set of genes or loci. Instead, both approaches allow a broad overview of genomic processes. Transcriptomics and population genomic approaches have been used to explore genomic responses in populations of fish from polluted environments and have identified sets of candidate genes and loci that appear biologically important in response to pollution. Often differences in gene expression or loci between polluted and reference populations are not conserved among polluted populations suggesting a biological complexity that we do not yet fully understand. As genomic approaches become less expensive with the advent of new sequencing and genotyping technologies, they will be more widely used in complimentary studies. However, while these genomic approaches are immensely powerful for identifying candidate gene and loci, the challenge of determining biological mechanisms that link genotypes and phenotypes remains. PMID:21072843

  20. Ethics in Online Publications

    PubMed Central

    2014-01-01

    Journals have been publishing the results of scientific investigations since the founding of Philosophical Transactions in 1665. Since then we have witnessed a massive expansion in the number of journals to the point that there are now approximately 28,000 active, peer reviewed journals collectively publishing more than 1.8 million articles per year. Before the mid-1990s, these journals were only available on paper but by the end of the 20th century, most journals had moved to online platforms. Online publication has also served as the impetus for the move to ‘open-access’ to the information contained in journals. The fact that a publication is ‘on-line’ and ‘open-access’ does not negate the responsibility of the author and the publisher to publish in an ethical way. [1] The document produced by the IFCC Ethics Task Force (TF-E) on publication ethics states that ‘Ethics in Science at its broadest level encompasses research ethics, medical ethics, publication ethics, conflicts of interest, ethical responsibilities as educator, plus many other areas.’ Thus publication ethics is a continuum from the first step of research design through to the information being read by the reader. In general terms ‘publication ethics’ includes the ethical behaviour of the authors in writing and submitting a scientific manuscript to a publisher for the purpose of publication, thus any discussion of publication ethics must include the role of the authors, referees, publisher and reader and the issues of authorship (and the use of ‘ghosts’), plagiarism, duplicate publication (including in different languages), image manipulation (particularly in the era of digitisation), and conflict of interest [2]. To aid the authors, and others involved in the process of publication, a number of resources are now available particularly those from the Committee on Publication Ethics (COPE) [3] and the World Association of Medical Editors (WAME) [4]. More recently the issue of

  1. Ethics in Online Publications

    PubMed Central

    2014-01-01

    Journals have been publishing the results of scientific investigations since the founding of Philosophical Transactions in 1665. Since then we have witnessed a massive expansion in the number of journals to the point that there are now approximately 28,000 active, peer reviewed journals collectively publishing more than 1.8 million articles per year. Before the mid-1990s, these journals were only available on paper but by the end of the 20th century, most journals had moved to online platforms. Online publication has also served as the impetus for the move to ‘open-access’ to the information contained in journals. The fact that a publication is ‘on-line’ and ‘open-access’ does not negate the responsibility of the author and the publisher to publish in an ethical way. [1] The document produced by the IFCC Ethics Task Force (TF-E) on publication ethics states that ‘Ethics in Science at its broadest level encompasses research ethics, medical ethics, publication ethics, conflicts of interest, ethical responsibilities as educator, plus many other areas.’ Thus publication ethics is a continuum from the first step of research design through to the information being read by the reader. In general terms ‘publication ethics’ includes the ethical behaviour of the authors in writing and submitting a scientific manuscript to a publisher for the purpose of publication, thus any discussion of publication ethics must include the role of the authors, referees, publisher and reader and the issues of authorship (and the use of ‘ghosts’), plagiarism, duplicate publication (including in different languages), image manipulation (particularly in the era of digitisation), and conflict of interest [2]. To aid the authors, and others involved in the process of publication, a number of resources are now available particularly those from the Committee on Publication Ethics (COPE) [3] and the World Association of Medical Editors (WAME) [4]. More recently the issue of

  2. Relationships of Preservice Early Childhood Teachers' Cultural Values, Ethical and Cognitive Developmental Levels, and Views of Nature of Science

    ERIC Educational Resources Information Center

    Akerson, Valarie L.; Buzzelli, Cary A.

    2007-01-01

    This study explored relationships between preservice early childhood teachers' views of nature of science (NOS), cognitive developmental levels, and their cultural values. Using the Views of Nature of Science Questionnaire (VNOS-B) and interviews, we assessed views of NOS. The Learning Context Questionnaire (LCQ) was used to determine the…

  3. Environmental, Ethical and Safety Issues in Chemistry/Science Curricula in Papua New Guinea Provincial High Schools

    ERIC Educational Resources Information Center

    Palmer, W. P.

    1986-01-01

    Chemistry occupies only a small portion of the Papua New Guinea science curriculum in grades seven to ten. Science itself occupies only a small proportion of the total curriculum. Nevertheless the existing syllabus, and previous and planned future revisions of it, give considerable prominence to environmental, health and safety issues. There is a…

  4. Business ethics in ethics committees?

    PubMed

    Boyle, P

    1990-01-01

    The "Ethics committees" column in this issue of the Hastings Center Report features an introduction by Cynthia B. Cohen and four brief commentaries on the roles hospital ethics committees may play in the making of institutional and public health care policy in the 1990s. The pros and cons of a broader, more public role for ethics committees in reconciling the business and patient care aspects of health care delivery are debated by Cohen in "Ethics committees as corporate and public policy advocates," and by Philip Boyle in this article. Boyle is an associate for ethical studies at The Hastings Center.

  5. Neither Confusing Cacophony Nor Culinary Complements: A Case Study of Mixed Metaphors for Genomic Science

    ERIC Educational Resources Information Center

    Ceccarelli, Leah

    2004-01-01

    This article undertakes a close rhetorical reading of the speeches given by Bill Clinton, Tony Blair, Francis Collins, and Craig Venter on June 26, 2000, at the White House ceremony announcing the completion of the Human Genome Project. Specifically, it looks at the metaphors used by each speaker to describe the activity of genomic scientists.…

  6. Accessible Genetics Research Ethics Education (AGREE): A Web-Based Program for IRBs and Investigators

    SciTech Connect

    Sugarman, Jeremy; Lee, Linda

    2006-03-31

    The primary objective of this project was to design and evaluate a series of web-based educational modules on genetics research ethics for members of Institutional Review Boards and investigators to facilitate the development and oversight of important research that is sensitive to the relevant ethical, legal and social issues. After a needs assessment was completed in March of 2003, five online educational modules on the ethics of research in genetics were developed, tested, and made available through a host website for AGREE: http://agree.mc.duke.edu/index.html. The 5 modules are: (1) Ethics and Genetics Research in Populations; (2) Ethics in Behavioral Genetics Research; (3) Ethical Issues in Research on Gene-Environment Interactions; (4) Ethical Issues in Reproductive Genetics Research; and (5) Ethical Issues in Diagnostic and Therapeutic Research. The development process adopted a tested approach used at Duke University School of Medicine in providing education for researchers and IRB members, supplementing it with expert input and a rigorous evaluation. The host website also included a description of the AGREE; short bios on the AGREE Investigators and Expert Advisory Panel; streaming media of selected presentations from a conference, Working at the Frontiers of Law and Science: Applications of the Human Genome held October 2-3, 2003, at the University of North Carolina at Chapel Hill; and links to online resources in genomics, research ethics, ethics in genomics research, and related organizations. The web site was active beginning with the posting of the first module and was maintained throughout the project period. We have also secured agreement to keep the site active an additional year beyond the project period. AGREE met its primary objective of creating web-based educational modules related to the ethical issues in genetics research. The modules have been disseminated widely. While it is clearly easier to judge the quality of the educational experience

  7. Integrating Ethics into the Social Studies Curriculum.

    ERIC Educational Resources Information Center

    Howe, Kenneth R.

    1991-01-01

    Urges incorporation of ethics into social studies curriculum. Provides an overview of ethical theory including principle-based theories of utilitarianism and deontology and virtue-based theories. Discusses philosophies of social science including positivism, interpretivism, and critical social science. Suggests teaching methods and curriculum…

  8. Whose Ethics, Whose Accountability? A Debate about University Research Ethics Committees

    ERIC Educational Resources Information Center

    Hoecht, Andreas

    2011-01-01

    Research ethics approval procedures and research ethics committees (RECs) are now well-established in most Western Universities. RECs base their judgements on an ethics code that has been developed by the health and biomedical sciences research community and that is widely considered to be universally valid regardless of discipline. On the other…

  9. Internet Research Ethics and the Policy Gap for Ethical Practice in Online Research Settings

    ERIC Educational Resources Information Center

    Warrell, Jacqueline G.; Jacobsen, Michele

    2014-01-01

    A growing number of education and social science researchers design and conduct online research. In this review, the Internet Research Ethics (IRE) policy gap in Canada is identified along with the range of stakeholders and groups that either have a role or have attempted to play a role in forming better ethics policy. Ethical issues that current…

  10. Prevention, Management, and Moderation: Ethical Frameworks of Governance

    ERIC Educational Resources Information Center

    Kohler, Jurgen

    2004-01-01

    This article seeks to analyse and draft an ethical framework of governance in the area of higher education and science. To this end, a distinction is made between ethical challenges as such, and preventive measures and remedies. An outline of ethical challenges to both higher education and science and governance is provided, addressing the quest…

  11. Medical ethics in the European Community.

    PubMed Central

    Riis, P

    1993-01-01

    Increasing European co-operation must take place in many areas, including medical ethics. Against the background of common cultural norms and pluralistic variation within political traditions, religion and lifestyles, Europe will have to converge towards unity within the field of medical ethics. This article examines how such convergence might develop with respect to four major areas: European research ethics committees, democratic health systems, the human genome project and rules for stopping futile treatments. PMID:8459444

  12. The burgeoning science of genetics and the impact on public policy.

    PubMed

    Hatch, Orrin G

    2004-01-01

    The legislative branch of government often wrestles with the challenges of public policy issues in the health care area that raise multi-dimensional questions that cut across disciplines of science, law, economics, and ethics. Sometimes the purely scientific issues can be confounding by themselves. This article highlights some key policy issues that require consideration in the post-genome era.

  13. Challenges in teaching ethics in medical schools.

    PubMed

    Perkins, H S; Geppert, C M; Hazuda, H P

    2000-05-01

    Modern medical ethics has effected dramatic changes in medicine. Yet teaching medical ethics still presents many challenges. The main teaching methods used--inpatient ethics consultations, courses, and case conferences--have notable weaknesses. In addition, the attitudes and knowledge gaps of some learners may hamper these methods further. To encourage open discussion of the challenges, we outline our current approach to teaching medical ethics. We teach with the conviction that ethics instruction gives physicians vital knowledge not available from science. Our teaching addresses ethical issues directly relevant to residents and students, emphasizes a few important concepts, and nurtures learners' critical reasoning skills. Our teaching also tries to use scarce faculty time efficiently. However, we believe successful medical ethics teaching requires medical schools to commit significant material and moral support. We hope the discussion here encourages medical ethics teachers everywhere to describe the challenges they face and to collaborate on finding solutions.

  14. Ethical and legal aspects of noninvasive prenatal genetic diagnosis.

    PubMed

    Dickens, Bernard M

    2014-02-01

    The new technology that will allow genetic testing of a fetus within the first trimester of pregnancy by isolating cell-free fetal DNA (cffDNA) in the mother's blood raises a range of ethical and legal issues. Considered noninvasive, this test is safe and reliable, and may avoid alternative genetic testing by amniocentesis or chorionic villus sampling, which risks causing spontaneous abortion. Ethical and legal issues of cffDNA testing will become more acute if testing expands to fetal whole-genome sequencing. Critical issues include the state of the science or diagnostic art; the appropriateness of offering the test; the implications of denying the test when it is available and appropriate; disclosure and counseling following test results; and management of patients' choices on acquiring test results. A challenge will be providing patients with appropriate counseling based on up-to-date genetic knowledge, and accommodating informed patients' legal choices.

  15. Precision Nutrition 4.0: A Big Data and Ethics Foresight Analysis--Convergence of Agrigenomics, Nutrigenomics, Nutriproteomics, and Nutrimetabolomics.

    PubMed

    Özdemir, Vural; Kolker, Eugene

    2016-02-01

    Nutrition is central to sustenance of good health, not to mention its role as a cultural object that brings together or draws lines among societies. Undoubtedly, understanding the future paths of nutrition science in the current era of Big Data remains firmly on science, technology, and innovation strategy agendas around the world. Nutrigenomics, the confluence of nutrition science with genomics, brought about a new focus on and legitimacy for "variability science" (i.e., the study of mechanisms of person-to-person and population differences in response to food, and the ways in which food variably impacts the host, for example, nutrient-related disease outcomes). Societal expectations, both public and private, and claims over genomics-guided and individually-tailored precision diets continue to proliferate. While the prospects of nutrition science, and nutrigenomics in particular, are established, there is a need to integrate the efforts in four Big Data domains that are naturally allied--agrigenomics, nutrigenomics, nutriproteomics, and nutrimetabolomics--that address complementary variability questions pertaining to individual differences in response to food-related environmental exposures. The joint use of these four omics knowledge domains, coined as Precision Nutrition 4.0 here, has sadly not been realized to date, but the potentials for such integrated knowledge innovation are enormous. Future personalized nutrition practices would benefit from a seamless planning of life sciences funding, research, and practice agendas from "farm to clinic to supermarket to society," and from "genome to proteome to metabolome." Hence, this innovation foresight analysis explains the already existing potentials waiting to be realized, and suggests ways forward for innovation in both technology and ethics foresight frames on precision nutrition. We propose the creation of a new Precision Nutrition Evidence Barometer for periodic, independent, and ongoing retrieval, screening

  16. Precision Nutrition 4.0: A Big Data and Ethics Foresight Analysis--Convergence of Agrigenomics, Nutrigenomics, Nutriproteomics, and Nutrimetabolomics.

    PubMed

    Özdemir, Vural; Kolker, Eugene

    2016-02-01

    Nutrition is central to sustenance of good health, not to mention its role as a cultural object that brings together or draws lines among societies. Undoubtedly, understanding the future paths of nutrition science in the current era of Big Data remains firmly on science, technology, and innovation strategy agendas around the world. Nutrigenomics, the confluence of nutrition science with genomics, brought about a new focus on and legitimacy for "variability science" (i.e., the study of mechanisms of person-to-person and population differences in response to food, and the ways in which food variably impacts the host, for example, nutrient-related disease outcomes). Societal expectations, both public and private, and claims over genomics-guided and individually-tailored precision diets continue to proliferate. While the prospects of nutrition science, and nutrigenomics in particular, are established, there is a need to integrate the efforts in four Big Data domains that are naturally allied--agrigenomics, nutrigenomics, nutriproteomics, and nutrimetabolomics--that address complementary variability questions pertaining to individual differences in response to food-related environmental exposures. The joint use of these four omics knowledge domains, coined as Precision Nutrition 4.0 here, has sadly not been realized to date, but the potentials for such integrated knowledge innovation are enormous. Future personalized nutrition practices would benefit from a seamless planning of life sciences funding, research, and practice agendas from "farm to clinic to supermarket to society," and from "genome to proteome to metabolome." Hence, this innovation foresight analysis explains the already existing potentials waiting to be realized, and suggests ways forward for innovation in both technology and ethics foresight frames on precision nutrition. We propose the creation of a new Precision Nutrition Evidence Barometer for periodic, independent, and ongoing retrieval, screening

  17. Crowd-Funded Micro-Grants for Genomics and “Big Data”: An Actionable Idea Connecting Small (Artisan) Science, Infrastructure Science, and Citizen Philanthropy

    PubMed Central

    Badr, Kamal F.; Dove, Edward S.; Endrenyi, Laszlo; Geraci, Christy Jo; Hotez, Peter J.; Milius, Djims; Neves-Pereira, Maria; Pang, Tikki; Rotimi, Charles N.; Sabra, Ramzi; Sarkissian, Christineh N.; Srivastava, Sanjeeva; Tims, Hesther; Zgheib, Nathalie K.; Kickbusch, Ilona

    2013-01-01

    Abstract Biomedical science in the 21st century is embedded in, and draws from, a digital commons and “Big Data” created by high-throughput Omics technologies such as genomics. Classic Edisonian metaphors of science and scientists (i.e., “the lone genius” or other narrow definitions of expertise) are ill equipped to harness the vast promises of the 21st century digital commons. Moreover, in medicine and life sciences, experts often under-appreciate the important contributions made by citizen scholars and lead users of innovations to design innovative products and co-create new knowledge. We believe there are a large number of users waiting to be mobilized so as to engage with Big Data as citizen scientists—only if some funding were available. Yet many of these scholars may not meet the meta-criteria used to judge expertise, such as a track record in obtaining large research grants or a traditional academic curriculum vitae. This innovation research article describes a novel idea and action framework: micro-grants, each worth $1000, for genomics and Big Data. Though a relatively small amount at first glance, this far exceeds the annual income of the “bottom one billion”—the 1.4 billion people living below the extreme poverty level defined by the World Bank ($1.25/day). We describe two types of micro-grants. Type 1 micro-grants can be awarded through established funding agencies and philanthropies that create micro-granting programs to fund a broad and highly diverse array of small artisan labs and citizen scholars to connect genomics and Big Data with new models of discovery such as open user innovation. Type 2 micro-grants can be funded by existing or new science observatories and citizen think tanks through crowd-funding mechanisms described herein. Type 2 micro-grants would also facilitate global health diplomacy by co-creating crowd-funded micro-granting programs across nation-states in regions facing political and financial instability, while

  18. Teaching ethical aptitude to graduate student researchers.

    PubMed

    Weyrich, Laura S; Harvill, Eric T

    2013-01-01

    Limited time dedicated to each training areas, irrelevant case-studies, and ethics "checklists" have resulted in bare-bones Responsible Conduct of Research (RCR) training for present biomedical graduate student researchers. Here, we argue that science graduate students be taught classical ethical theory, such as virtue ethics, consequentialist theory, and deontological theory, to provide a basic framework to guide researchers through ethically complex situations and examine the applicability, implications, and societal ramifications of their research. Using a relevant biomedical research example to illustrate this point, we argue that proper ethics training for graduate student researchers not only will enhance current RCR training, but train more creative, responsible scientists.

  19. Ethics of responsibility in a multicultural context.

    PubMed

    Turoldo, Fabrizio

    2010-01-01

    Caring for patients from different cultural or religious backgrounds may create difficult ethical dilemmas for physicians. The article reviews four case histories, involving patients from the Navajo culture or the Christian Science Church, that highlight some of these ethical problems. It then discusses an "ethics of responsibility," which is based on and encompasses a variety of meanings of responsibility, including responsibility as recognition, as taking charge, as the ability to assess the consequences of one's actions, and as making a commitment. An ethics of responsibility provides a novel perspective for resolving ethical problems in medicine. PMID:20495256

  20. Ethics and mental illness research.

    PubMed

    Roberts, Laura Weiss

    2002-09-01

    There are many tasks ahead in the area of ethics and mental illness research. We face unknown challenges in psychiatric genetics projects, studies of psychopharmacological interventions in children, controversial scientific designs (e.g., symptom challenge, medication-free interval), and cross-disciplinary research incorporating goals and methods of health services, epidemiology, and social and behavioral science endeavors. Boundaries between innovative clinical practices and research-related experimentation will become increasingly difficult to distinguish, as will the roles between clinicians, clinical researchers, and basic scientists. Moreover, the institutions and systems in which research occurs are being rapidly and radically revised, raising new questions about oversight responsibilities and standards. Our ability to identify and respond to the ethical questions arising in this uncharted territory will depend on our willingness to self-reflect, to integrate the observations and insights of the past century, to think with great clarity, and to anticipate novel ethical problems that keep company with scientific advancements. It will also depend on data. Empirical study of ethical dimensions of human research is essential to anchor and attune the intuitions and theoretical constructs that we develop. Science and ethics have changed over the past 100 years, as they will over the next century. It is ironic that the ethical acceptability of psychiatric research is so much in question at this time, when it holds so much promise for advancing our understanding of mental illness and its treatment. The tension between the duty to protect vulnerable individuals and the duty to perform human science will continue to grow, as long as ethics and science are seen as separable, opposing forces with different aims championed by different heroes. The profession of psychiatry is poised to move toward a new, more coherent research ethics paradigm in which scientific and

  1. Ethics and mental illness research.

    PubMed

    Roberts, Laura Weiss

    2002-09-01

    There are many tasks ahead in the area of ethics and mental illness research. We face unknown challenges in psychiatric genetics projects, studies of psychopharmacological interventions in children, controversial scientific designs (e.g., symptom challenge, medication-free interval), and cross-disciplinary research incorporating goals and methods of health services, epidemiology, and social and behavioral science endeavors. Boundaries between innovative clinical practices and research-related experimentation will become increasingly difficult to distinguish, as will the roles between clinicians, clinical researchers, and basic scientists. Moreover, the institutions and systems in which research occurs are being rapidly and radically revised, raising new questions about oversight responsibilities and standards. Our ability to identify and respond to the ethical questions arising in this uncharted territory will depend on our willingness to self-reflect, to integrate the observations and insights of the past century, to think with great clarity, and to anticipate novel ethical problems that keep company with scientific advancements. It will also depend on data. Empirical study of ethical dimensions of human research is essential to anchor and attune the intuitions and theoretical constructs that we develop. Science and ethics have changed over the past 100 years, as they will over the next century. It is ironic that the ethical acceptability of psychiatric research is so much in question at this time, when it holds so much promise for advancing our understanding of mental illness and its treatment. The tension between the duty to protect vulnerable individuals and the duty to perform human science will continue to grow, as long as ethics and science are seen as separable, opposing forces with different aims championed by different heroes. The profession of psychiatry is poised to move toward a new, more coherent research ethics paradigm in which scientific and

  2. Captain America, Tuskegee, Belmont, and Righteous Guinea Pigs: Considering Scientific Ethics through Official and Subaltern Perspectives

    ERIC Educational Resources Information Center

    Weinstein, Matthew

    2008-01-01

    With an eye towards a potential scientific ethics curriculum, this paper examines four contrasting discourses regarding the ethics of using human subjects in science. The first two represent official statements regarding ethics. These include the U.S.'s National Science Education Standards, that identify ethics with a professional code, and the…

  3. Classroom Use of Narrative and Documentary Film Leads to an Enhanced Understanding of Cultural Diversity and Ethics in Science

    ERIC Educational Resources Information Center

    González, Edward L. F.; Lewis, C. Thomas; Slayback-Barry, Denise; Yost, Robert W.

    2016-01-01

    For a first-year seminar, Windows on Science, the authors developed a cooperative learning activity around film designed to meet two of the campus-wide Principles of Undergraduate Learning. The teaching method utilizes the power of storytelling by screening narrative and documentary films. In the process, the methodology helps students to realize…

  4. Scientific and Ethical Reflections on Academic Corruption in Universities: On the Science Research Evaluation System in China's Universities

    ERIC Educational Resources Information Center

    Xiaochun, Wu; Dan, Jia

    2007-01-01

    A study of the science research activities in China's institutions of higher learning in recent years indicates that there is a major connection between the current instances of corruption in scientific research at colleges and universities and the evaluations system for scientific research implemented at many of the colleges and universities.…

  5. How to Be an Ethical Engineer in an Often Unethical World: Integrated Interdisciplinary Education in the Sciences and Humanities

    ERIC Educational Resources Information Center

    Maurice, Patricia Ann; Peterson, Brian

    2015-01-01

    Catholic colleges and universities traditionally are grounded in liberal arts education, yet many Catholic institutions also educate future scientists and engineers. We propose that a distinctively Catholic science and engineering education should include an emphasis on Catholic concepts of the common good and social justice, liberal arts…

  6. Intellectual Freedom and the National Laboratories : 2000 Sigma Xi Forum New Ethical Challenges in Science and Technology, November 9-10, 2000, Albuquerque, New Mexico"

    SciTech Connect

    Browne, John C.

    2001-01-01

    As we move toward the 21st century, I believe the importance of the ethical system on which the scientific establishment, including the national laboratories, can build its contributions to society is becoming increasingly more important. Issues include the impact of the research we do, the trust we have between ourselves and the general public and the federal government, and the complexity of the problems that we work on. One of the most important roles that I see for research management in large institutions, like the national laboratories, is to create the appropriate environment for ethical behavior for all of its employees. Ethics and modern science demands that we create and live a set of shared values. As Bob Dynes pointed out this morning, we're not just talking about rules. We really must have values upon which we build and create the kind of behaviors we want to see. The major issue that I see in developing these shared values is that management and employees must jointly develop, socialize and live those shared values. In this session today, as I said, we want to explore the issues of intellectual freedom and ethical environment in government and the contracts under which the national laboratories operate. One of the laboratories is run by a nonprofit, the University of California, and the other is a paid-for-profit corporation. I don't know if there are any differences, depending on who the overseeing contractor is. I don't think there are, but it would be interesting to explore any differences we might see between the two. We have chosen the title 'Intellectual Freedom.' It's not academic freedom. Although, clearly, there are a lot of shared attributes between academic freedom and intellectual freedom. In our case, intellectual freedom allows our researchers to challenge technical decisions that are made by the laboratory, by the government or by their peers in their area of expertise, not in policy making, but in the scientific realm. It really does

  7. Beyond Ethics.

    ERIC Educational Resources Information Center

    Jarvis, F. Washington

    1993-01-01

    Focuses on piety and ethics in education because current debates about education for character frequently neglect the fundamental existential questions that underlie the ethical. Every school ought to be teaching certain basic existential truths about mortality and the possibility of meaning in life, including man's modest place in the universe.…

  8. Iconoclastic ethics.

    PubMed

    Black, D

    1984-12-01

    Arguments are advanced, on a pragmatic basis, for preferring a 'situational' approach to medical ethical problems, rather than an approach based on any one of the dogmatic formulations on offer. The consequences of such a preference are exemplified in relation to confidentiality; and in relation to the ethical dilemmas which surround the beginning and the end of terrestrial human life.

  9. Large ethics.

    PubMed

    Chambers, David W

    2008-01-01

    This essay presents an alternative to the traditional view that ethics means judging individual behavior against standards of right and wrong. Instead, ethics is understood as creating ethical communities through the promises we make to each other. The "aim" of ethics is to demonstrate in our own behavior a credible willingness to work to create a mutually better world. The "game" of ethics then becomes searching for strategies that overlap with others' strategies so that we are all better for intending to act on a basis of reciprocal trust. This is a difficult process because we have partial, simultaneous, shifting, and inconsistent views of the world. But despite the reality that we each "frame" ethics in personal terms, it is still possible to create sufficient common understanding to prosper together. Large ethics does not make it a prerequisite for moral behavior that everyone adheres to a universally agreed set of ethical principles; all that is necessary is sufficient overlap in commitment to searching for better alternatives.

  10. Strategies for complete mitochondrial genome sequencing on Ion Torrent PGM™ platform in forensic sciences.

    PubMed

    Zhou, Yishu; Guo, Fei; Yu, Jiao; Liu, Feng; Zhao, Jinling; Shen, Hongying; Zhao, Bin; Jia, Fei; Sun, Zhu; Song, He; Jiang, Xianhua

    2016-05-01

    Next generation sequencing (NGS) is a time saving and cost-efficient method to detect the complete mitochondrial genome (mtGenome) compared to Sanger sequencing. In this study we focused on developing strategies for mtGenome sequencing on the Ion Torrent PGM™ platform and NGS data analysis. With our experience, 4, 15 and 30 samples could be loaded onto Ion 314™, Ion 316™ and Ion 318™ chips respectively at a pooling concentration of 26pM, achieving to sufficient average coverage of ≥1500 × and well strand balance of 1.05. Data processing software is essential to NGS mega data analysis. The in-house Perl scripts were developed for primary data analysis to screen out uncertain positions and samples from variant call format (VCF) reports and for pedigree study to perform pairwise comparisons. The Integrative Genomic Viewer (IGV) and the NextGENe software were introduced to secondary data analysis. The mthap and EMMA were employed for haplogroup assignment. The dataset was reviewed and approved by the EMPOP as the final version, which showed 2.66% error rate generated from the Torrent Variant Caller (TVC). Across the mtGenome, 4022 variants were found at 725 nucleotide positions, where ratio of transitions to transversions was estimated at 20.89:1 and 22.18% of variants was concentrated at hypervariable segments I and II (HVS-I and HVS-II). Totally, 107 complete mtGenome haplotypes were observed from 107 Northern Chinese Han and assigned to 88 haplogroups. The random match probability (RMP) of complete mtGenome was calculated as 0.009345794, decreasing 26.19% by comparison to that of HVS-I only, and the haplotype diversity (HD) was evaluated as 1, increasing 0.33% by comparison to that of HVS-I only. Principal component analysis (PCA) showed that our population was clustered to East and Southeast Asians. The strategies in this study are suitable for complete mtGenome sequencing on Ion Torrent PGM™ platform and Northern Chinese Han (EMP00670) is the first

  11. The Historical Basis of Engineering Ethics

    NASA Astrophysics Data System (ADS)

    Furuya, Keiichi

    There are different objects and motives between scientists and engineers. Science is to create new knowledge (episteme), while technology (techne) is to create new utility. Both types of social responsibility are required for engineer, because modern technology is tightly connected with science. The relationship between ethics for scientists and engineers is discussed as an evolution of ethical objects. A short history of engineering societies in U.S.A. and Japan are introduced with their ethical perspectives. As a conclusion, respect for fundamental rights for existence of those who stand in, with, and around engineers and their societies is needed for better engineering ethics.

  12. Life insurance: genomic stratification and risk classification

    PubMed Central

    Joly, Yann; Burton, Hilary; Knoppers, Bartha Maria; Feze, Ida Ngueng; Dent, Tom; Pashayan, Nora; Chowdhury, Susmita; Foulkes, William; Hall, Alison; Hamet, Pavel; Kirwan, Nick; Macdonald, Angus; Simard, Jacques; Van Hoyweghen, Ine

    2014-01-01

    With the development and increasing accessibility of new genomic tools such as next-generation sequencing, genome-wide association studies, and genomic stratification models, the debate on genetic discrimination in the context of life insurance became even more complex, requiring a review of current practices and the exploration of new scenarios. In this perspective, a multidisciplinary group of international experts representing different interests revisited the genetics and life insurance debate during a 2-day symposium ‘Life insurance: breast cancer research and genetic risk prediction seminar' held in Quebec City, Canada on 24 and 25 September 2012. Having reviewed the current legal, social, and ethical issues on the use of genomic information in the context of life insurance, the Expert Group identified four main questions: (1) Have recent developments in genomics and related sciences changed the contours of the genetics and life insurance debate? (2) Are genomic results obtained in a research context relevant for life insurance underwriting? (3) Should predictive risk assessment and risk stratification models based on genomic data also be used for life insurance underwriting? (4) What positive actions could stakeholders in the debate take to alleviate concerns over the use of genomic information by life insurance underwriters? This paper presents a summary of the discussions and the specific action items recommended by the Expert Group. PMID:24129434

  13. Life insurance: genomic stratification and risk classification.

    PubMed

    Joly, Yann; Burton, Hilary; Knoppers, Bartha Maria; Feze, Ida Ngueng; Dent, Tom; Pashayan, Nora; Chowdhury, Susmita; Foulkes, William; Hall, Alison; Hamet, Pavel; Kirwan, Nick; Macdonald, Angus; Simard, Jacques; Van Hoyweghen, Ine

    2014-05-01

    With the development and increasing accessibility of new genomic tools such as next-generation sequencing, genome-wide association studies, and genomic stratification models, the debate on genetic discrimination in the context of life insurance became even more complex, requiring a review of current practices and the exploration of new scenarios. In this perspective, a multidisciplinary group of international experts representing different interests revisited the genetics and life insurance debate during a 2-day symposium 'Life insurance: breast cancer research and genetic risk prediction seminar' held in Quebec City, Canada on 24 and 25 September 2012. Having reviewed the current legal, social, and ethical issues on the use of genomic information in the context of life insurance, the Expert Group identified four main questions: (1) Have recent developments in genomics and related sciences changed the contours of the genetics and life insurance debate? (2) Are genomic results obtained in a research context relevant for life insurance underwriting? (3) Should predictive risk assessment and risk stratification models based on genomic data also be used for life insurance underwriting? (4) What positive actions could stakeholders in the debate take to alleviate concerns over the use of genomic information by life insurance underwriters? This paper presents a summary of the discussions and the specific action items recommended by the Expert Group.

  14. Type 2 diabetes, genomics, and nursing: necessary next steps to advance the science into improved, personalized care.

    PubMed

    Underwood, Patricia C

    2011-01-01

    Type 2 diabetes mellitus (T2DM) is an inherited, chronic disorder with long-term complications; including cardiovascular disease the leading cause of mortality in the United States. The prevalence of T2DM and its complications are on the rise in the United States, highlighting the need for improved individualized prevention and treatment strategies. Exciting advancements in the field of genomics has led to the recent discovery of numerous genetic markers for T2DM; completing a promising first step toward improved, individualized prevention and treatment strategies for T2DM. These genomic markers, identified using genome-wide association studies (GWAS), candidate gene, and rare variant methodology, identify new physiologic pathways underlying the development of T2DM. Much more work is needed to successfully translate the identification of genetic markers for T2DM into improved, individualized prevention and treatment strategies. As front line providers and leaders of prevention and treatment strategies for chronic disease, nurses, nurse practitioners, and nurse scientists must contribute to this translational effort. Thus, it is important for nurses at all levels to (a) be aware of the current science of genetics and T2DM and (b) participate in the translation of this genetic information into improved, personalized patient care. The aim of this review is to (a) provide an overview of the current state of the science of genetic markers and T2DM and (b) highlight essential next steps to successfully translate the identification of genetic markers for T2DM into improved prevention and treatment strategies; focusing particularly on the role of nursing in this process.

  15. "Harnessing genomics to improve health in India" - an executive course to support genomics policy.

    PubMed

    Acharya, Tara; Kumar, Nandini K; Muthuswamy, Vasantha; Daar, Abdallah S; Singer, Peter A

    2004-05-19

    BACKGROUND: The benefits of scientific medicine have eluded millions in developing countries and the genomics revolution threatens to increase health inequities between North and South. India, as a developing yet also industrialized country, is uniquely positioned to pioneer science policy innovations to narrow the genomics divide. Recognizing this, the Indian Council of Medical Research and the University of Toronto Joint Centre for Bioethics conducted a Genomics Policy Executive Course in January 2003 in Kerala, India. The course provided a forum for stakeholders to discuss the relevance of genomics for health in India. This article presents the course findings and recommendations formulated by the participants for genomics policy in India. METHODS: The course goals were to familiarize participants with the implications of genomics for health in India; analyze and debate policy and ethical issues; and develop a multi-sectoral opinion leaders' network to share perspectives. To achieve these goals, the course brought together representatives of academic research centres, biotechnology companies, regulatory bodies, media, voluntary, and legal organizations to engage in discussion. Topics included scientific advances in genomics, followed by innovations in business models, public sector perspectives, ethics, legal issues and national innovation systems. RESULTS: Seven main recommendations emerged: increase funding for healthcare research with appropriate emphasis on genomics; leverage India's assets such as traditional knowledge and genomic diversity in consultation with knowledge-holders; prioritize strategic entry points for India; improve industry-academic interface with appropriate incentives to improve public health and the nation's wealth; develop independent, accountable, transparent regulatory systems to ensure that ethical, legal and social issues are addressed for a single entry, smart and effective system; engage the public and ensure broad-based input

  16. [Ethical intervention in pragmatic regime].

    PubMed

    Maesschalck, Marc

    2012-01-01

    This article analyzes the impact of the neo-pragmatist turn in social sciences from the point of view of the method of ethical intervention. It focuses specifically on the idea of building a "learning community" as the horizon for strengthening participative 'capacitation'. It finally points at the limits of such a perspective, from the point of view of institutional building of new subjectivities through and beyond the practices proposed by ethical interventions.

  17. Half a Tithe for Ethics.

    ERIC Educational Resources Information Center

    Larson, Edward J.

    1993-01-01

    Two ethical concerns about the Human Genome Project, which aims to sequence all the DNA of a human cell, are discussed: (1) use of germ-line gene therapy to treat perceived hereditary defects or enhance supposed genetic attributes, and (2) personal privacy and potential discrimination arising from possession of individual genetic information. (MSE)

  18. How experience confronts ethics.

    PubMed

    Hoffmaster, Barry; Hooker, Cliff

    2009-05-01

    Analytic moral philosophy's strong divide between empirical and normative restricts facts to providing information for the application of norms and does not allow them to confront or challenge norms. So any genuine attempt to incorporate experience and empirical research into bioethics--to give the empirical more than the status of mere 'descriptive ethics'--must make a sharp break with the kind of analytic moral philosophy that has dominated contemporary bioethics. Examples from bioethics and science are used to illustrate the problems with the method of application that philosophically prevails in both domains and with the conception of rationality that underlies this method. Cues from how these problems can be handled in science then introduce summaries of richer, more productive naturalist and constructivist accounts of reason and normative knowledge. Liberated by a naturalist approach to ethics and an enlarged conception of rationality, empirical work can be recognized not just as essential to bioethics but also as contributing to normative knowledge.

  19. Incorporating global components into ethics education.

    PubMed

    Wang, George; Thompson, Russell G

    2013-03-01

    Ethics is central to science and engineering. Young engineers need to be grounded in how corporate social responsibility principles can be applied to engineering organizations to better serve the broader community. This is crucial in times of climate change and ecological challenges where the vulnerable can be impacted by engineering activities. Taking a global perspective in ethics education will help ensure that scientists and engineers can make a more substantial contribution to development throughout the world. This paper presents the importance of incorporating the global and cross culture components in the ethic education. The authors bring up a question to educators on ethics education in science and engineering in the globalized world, and its importance, necessity, and impendency. The paper presents several methods for discussion that can be used to identify the differences in ethics standards and practices in different countries; enhance the student's knowledge of ethics in a global arena. PMID:21769592

  20. Field of genes: the politics of science and identity in the Estonian Genome Project.

    PubMed

    Fletcher, Amy L

    2004-04-01

    This case study of the Estonian Genome Project (EGP) analyses the Estonian policy decision to construct a national human gene bank. Drawing upon qualitative data from newspaper articles and public policy documents, it focuses on how proponents use discourse to link the EGP to the broader political goal of securing Estonia's position within the Western/European scientific and cultural space. This dominant narrative is then situated within the analytical notion of the "brand state", which raises potentially negative political consequences for this type of market-driven genomic research. Considered against the increasing number of countries engaging in gene bank and/or gene database projects, this analysis of Estonia elucidates issues that cross national boundaries, while also illuminating factors specific to this small, post-Soviet state as it enters the global biocybernetic economy.