Science.gov

Sample records for genome science ethics

  1. Genomic medicine: evolving science, evolving ethics

    PubMed Central

    Soden, Sarah E; Farrow, Emily G; Saunders, Carol J; Lantos, John D

    2012-01-01

    Genomic medicine is rapidly evolving. Next-generation sequencing is changing the diagnostic paradigm by allowing genetic testing to be carried out more quickly, less expensively and with much higher resolution; pushing the envelope on existing moral norms and legal regulations. Early experience with implementation of next-generation sequencing to diagnose rare genetic conditions in symptomatic children suggests ways that genomic medicine might come to be used and some of the ethical issues that arise, impacting test design, patient selection, consent, sequencing analysis and communication of results. The ethical issues that arise from use of new technologies cannot be satisfactorily analyzed until they are understood and they cannot be understood until the technologies are deployed in the real world. PMID:23173007

  2. 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…

  3. 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.

  4. 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.

  5. Teaching Ethics in Science.

    ERIC Educational Resources Information Center

    Reiss, Michael

    1999-01-01

    Summarizes arguments for and against teaching ethics within science education, and clarifies what might be the several aims of teaching ethics in science. Discusses how ethics instruction might be incorporated into the science curriculum. (Contains 120 references.) (WRM)

  6. Mapping and sequencing the human genome: Science, ethics, and public policy

    SciTech Connect

    Cutter, M.A.G.; Drexler, E.; McCullough, L.B.; Rossiter, B.; McInerney, J.D.; Murray, J.C.; Zola, J.

    1992-12-31

    Development of this study guide followed the standard process of curriculum development at the Biological Sciences Curriculum Study (BSCS). The production of this study guide was a collaborative effort between BSCS and the American Medical Association. The purpose of this guide is provide students with the knowledge and skills required to understand the Human Genome Project. It is important that they have some idea of its objectives, its scope, its inherent assumptions, and its potential implications.

  7. 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.

  8. 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…

  9. 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

  10. Ethical issues in human genome research.

    PubMed

    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. 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…

  12. Teaching Military Ethics as a Science 2

    DTIC Science & Technology

    1989-03-01

    Both Rene Descartes (1596-1650) and Gottfried Leibniz (1646-1716), the inventor of differential calculus, attempted to found a science of ethics on...produce a science of ethics nor because the method of science is incomatible with ethics. Both Rene Descartes (1596-1650) and Gottfried’Leibniz (1646

  13. 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…

  14. 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…

  15. Data science ethics in government.

    PubMed

    Drew, Cat

    2016-12-28

    Data science can offer huge opportunities for government. With the ability to process larger and more complex datasets than ever before, it can provide better insights for policymakers and make services more tailored and efficient. As with all new technologies, there is a risk that we do not take up its opportunities and miss out on its enormous potential. We want people to feel confident to innovate with data. So, over the past 18 months, the Government Data Science Partnership has taken an open, evidence-based and user-centred approach to creating an ethical framework. It is a practical document that brings all the legal guidance together in one place, and is written in the context of new data science capabilities. As part of its development, we ran a public dialogue on data science ethics, including deliberative workshops, an experimental conjoint survey and an online engagement tool. The research supported the principles set out in the framework as well as provided useful insight into how we need to communicate about data science. It found that people had a low awareness of the term 'data science', but that showing data science examples can increase broad support for government exploring innovative uses of data. But people's support is highly context driven. People consider acceptability on a case-by-case basis, first thinking about the overall policy goals and likely intended outcome, and then weighing up privacy and unintended consequences. The ethical framework is a crucial start, but it does not solve all the challenges it highlights, particularly as technology is creating new challenges and opportunities every day. Continued research is needed into data minimization and anonymization, robust data models, algorithmic accountability, and transparency and data security. It also has revealed the need to set out a renewed deal between the citizen and state on data, to maintain and solidify trust in how we use people's data for social good.This article is part

  16. 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

  17. Reverence and ethics in science.

    PubMed

    Kovac, Jeffrey

    2013-09-01

    Codes of ethics abound in science, but the question of why such codes should be obeyed is rarely asked. Various reasons for obeying a professional code have been proposed, but all are unsatisfactory in that they do not really motivate behavior. This article suggests that the long forgotten virtue of reverence provides both a reason to obey a professional code and motivation to do so. In addition, it discusses the importance of reverence as a cardinal virtue for scientists drawing on the ideas of Paul Woodruff on the role of virtue in community.

  18. [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.

  19. 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.

  20. Human Genome Editing and Ethical Considerations.

    PubMed

    Krishan, Kewal; Kanchan, Tanuj; Singh, Bahadur

    2016-04-01

    Editing human germline genes may act as boon in some genetic and other disorders. Recent editing of the genome of the human embryo with the CRISPR/Cas9 editing tool generated a debate amongst top scientists of the world for the ethical considerations regarding its effect on the future generations. It needs to be seen as to what transformation human gene editing brings to humankind in the times to come.

  1. 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.

  2. The Ethical Challenges of Socially Responsible Science.

    PubMed

    Resnik, David B; Elliott, Kevin C

    2016-01-01

    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.

  3. 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

  4. 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

  5. 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.

  6. Towards disability ethics: a social science perspective.

    PubMed

    Shaw, Rhonda; Sullivan, Martin

    2003-06-01

    In the social sciences, debates about the discursive and material constitution of subjectivity and identity no longer appear to be at loggerheads. This has important implications for how we are to construct a framework for thinking about disability ethics. Following recent inroads in disability theory and in the sociology of ethics, we would argue that one of the aims of a disability ethics is not to view disability exclusively as a question of impairment, but to reclaim the social aspects of impairment in conjunction with the embodied aspects of disability. We would also suggest that the social and cultural construction of impairment, or abnormal corporeality, cannot be considered apart from the moral and existential relations that exist between disabled and non-disabled persons. The question we want to raise in this discussion is whether thinking disability ethics through a bioethics framework is adequate to this task.

  7. Ethics, Issues and Science Education

    ERIC Educational Resources Information Center

    Palmer, W. P.

    1992-01-01

    For the past two years at NTU, I have been running a fourth year Bachelor of Education course on science issues. The majority of those doing the course are working primary teachers from a variety of backgrounds. The first part of the course consists of the history and philosophy of science, whilst the second part concerns science issues. The…

  8. Marketing the Social Sciences Ethically.

    ERIC Educational Resources Information Center

    Clavner, Jerry B.

    Social sciences in the community college are at a critical point in their history and development. Except for a few statistical aberrations, enrollment in the social sciences and humanities is declining significantly. The idea of marketing a segment of a college's or university's offerings, particularly when it is not tied to a particular problem…

  9. The role of ethics in science and engineering.

    PubMed

    Johnson, Deborah G

    2010-12-01

    It is generally thought that science and engineering should never cross certain ethical lines. The idea connects ethics to science and engineering, but it frames the relationship in a misleading way. Moral notions and practices inevitably influence and are influenced by science and engineering. The important question is how such interactions should take place. Anticipatory ethics is a new approach that integrates ethics into technological development.

  10. An ethics safe harbor for international genomics research?

    PubMed Central

    2013-01-01

    Background Genomics research is becoming increasingly globally connected and collaborative, contesting traditional ethical and legal boundaries between global and local research practice. As well, global data-driven genomics research holds great promise for health discoveries. Yet, paradoxically, current research ethics review systems around the world challenge potential improvements in human health from such research and thus undermine respect for research participants. Case reports illustrate that the current system is costly, fragmented, inefficient, inadequate, and inconsistent. There is an urgent need to improve the governance system of ethics review to enable secure and seamless genomic and clinical data sharing across jurisdictions. Discussion Building on the international privacy 'safe harbor’ model that was developed following the adoption of the European Privacy Directive, we propose an international infrastructure. The goal is to create a streamlined and harmonized ethics governance system for international, data-driven genomics research projects. The proposed 'Safe Harbor Framework for International Ethics Equivalency’ would consist in part of an agency supporting an International Federation for Ethics Review (IFER), formed by a voluntary agreement among countries, granting agencies, philanthropies, institutions, and healthcare, patient advocacy, and research organizations. IFER would be both a central ethics review body and also a forum for review and follow-up of policies concerning ethics norms for international genomics research projects. It would be built on five principle elements: (1) registration; (2) compliance review; (3) recognition; (4) monitoring and enforcement; and (5) public participation. Summary A Safe Harbor Framework for International Ethics Equivalency would create many benefits for researchers, countries, and the general public, and may eventually have application beyond genomics to other areas of biomedical research that

  11. Fieldwork and social science research ethics.

    PubMed

    Contractor, Qudsiya

    2008-01-01

    Fieldwork as a part of social science research brings the researcher closest to the subject of research. It is a dynamic process where there is an exchange between the researcher, participants, stakeholders, gatekeepers, the community and the larger sociopolitical context in which the research problem is located. Ethical dilemmas that surface during fieldwork often pose a unique challenge to the researcher. This paper is based on field experiences during an action research study conducted with a human rights perspective. It discusses the role conflict that researchers face during fieldwork in a situation of humanitarian crisis. It raises issues pertaining to the need to extend the ethical decision-making paradigm to address ethical dilemmas arising during the course of fieldwork.

  12. Genomics and the public health code of ethics.

    PubMed

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

    2005-12-01

    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.

  13. Croatia founded a national body for ethics in science.

    PubMed

    Puljak, Livia

    2007-06-01

    The Committee for Ethics in Science and Higher Education (CESHE) was created in Croatia as a national body appointed by the Parliament. Thus Croatia became one of a handful of countries with national means of responding to allegations of scientific misconduct. The Committee's duties, with the help of the Ethics Code, include promotion of ethical norms and values in science and higher education. The CESHE will work on cases of possible research misconduct and alleged disregard for the ethical norms associated with research.

  14. [Science and ethics, therapeutic misconception and mirage].

    PubMed

    Raymond, J; Long, H

    2008-12-01

    Medical practice changes constantly. Ethical imperatives are however incorrigible. How can we reconcile ethics, practice and progress? Some bioethicians argue that research and care should be disentangled to minimize the 'therapeutic misconception', a clinical propensity to believe that patients are the object of medical care, while in fact they are the subjects of a scientific experiment. On the contrary, we believe that clinical research should be an integral part of the good practice. A divorce between research and clinical practice leads to an incorrigible medicine, liable to the therapeutic mirage, that is the false belief that everything modern medicine can offer has been proved beneficial. But both therapeutic misconception and mirage are possible because of a misunderstanding of either research or clinical practice. In this essay we review ethical principles behind clinical trial methodology and attempt to reconcile ethics, science and clinical practice. Not only should clinical research be integrated to the good practice of medicine, it should also be part of training in our specialty.

  15. Genomics for Weed Science

    Technology Transfer Automated Retrieval System (TEKTRAN)

    Numerous genomic-based studies have provided insight to the physiological and evolutionary processes involved in developmental and environmental processes of model plants such as arabidopsis and rice. However, far fewer efforts have been attempted to use genomic resources to study physiological and ...

  16. Stem cell frontiers: science, ethics and regulation.

    PubMed

    Hearn, John

    2007-08-01

    The isolation of human stem cells and the cloning of "Dolly" in the late 1990s, based on primate and other animal studies in the previous 20 years, created an explosion of interest that continues with daily reports in much of the world's press. The science has progressed steadily but not always smoothly, with promising discoveries in the potency and flexibility of cells derived from embryonic, umbilical cord and adult tissues. The promise of a revolutionary new era in health and medical sciences and systems requires careful scientific method, ethical debate and supportive legal and regulatory frameworks to achieve success. The frontiers of the science are focusing on the regulation of cell lineage choice and the development of designer stem cells for therapeutic cloning; the ethical debate focuses on the special status of the human embryo and the pathways to applications; while legal and regulatory frameworks differ around the world. There is some risk that the promises are overtaking the reality of progress, with the rush for results and premature offering of dubious remedies compromising scientific method and credibility. Stem cells should not be the snake oil of our times, nor should short cuts and short sell promises, fuelled by illusions of fame and fortune, risk the trust of the public in science and medicine.

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

    PubMed

    Barazzetti, Gaia; Kaufmann, Alain; Benaroyo, Lazare

    2014-05-07

    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.

  18. 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

  19. Basing Science Ethics on Respect for Human Dignity.

    PubMed

    Aközer, Mehmet; Aközer, Emel

    2016-12-01

    A "no ethics" principle has long been prevalent in science and has demotivated deliberation on scientific ethics. This paper argues the following: (1) An understanding of a scientific "ethos" based on actual "value preferences" and "value repugnances" prevalent in the scientific community permits and demands critical accounts of the "no ethics" principle in science. (2) The roots of this principle may be traced to a repugnance of human dignity, which was instilled at a historical breaking point in the interrelation between science and ethics. This breaking point involved granting science the exclusive mandate to pass judgment on the life worth living. (3) By contrast, respect for human dignity, in its Kantian definition as "the absolute inner worth of being human," should be adopted as the basis to ground science ethics. (4) The pathway from this foundation to the articulation of an ethical duty specific to scientific practice, i.e., respect for objective truth, is charted by Karl Popper's discussion of the ethical principles that form the basis of science. This also permits an integrated account of the "external" and "internal" ethical problems in science. (5) Principles of the respect for human dignity and the respect for objective truth are also safeguards of epistemic integrity. Plain defiance of human dignity by genetic determinism has compromised integrity of claims to knowledge in behavioral genetics and other behavioral sciences. Disregard of the ethical principles that form the basis of science threatens epistemic integrity.

  20. Genomics for Weed Science

    PubMed Central

    Horvath, David

    2010-01-01

    Numerous genomic-based studies have provided insight to the physiological and evolutionary processes involved in developmental and environmental processes of model plants such as arabidopsis and rice. However, far fewer efforts have been attempted to use genomic resources to study physiological and evolutionary processes of weedy plants. Genomics-based tools such as extensive EST databases and microarrays have been developed for a limited number of weedy species, although application of information and resources developed for model plants and crops are possible and have been exploited. These tools have just begun to provide insights into the response of these weeds to herbivore and pathogen attack, survival of extreme environmental conditions, and interaction with crops. The potential of these tools to illuminate mechanisms controlling the traits that allow weeds to invade novel habitats, survive extreme environments, and that make weeds difficult to eradicate have potential for both improving crops and developing novel methods to control weeds. PMID:20808523

  1. Genomics for weed science.

    PubMed

    Horvath, David

    2010-03-01

    Numerous genomic-based studies have provided insight to the physiological and evolutionary processes involved in developmental and environmental processes of model plants such as arabidopsis and rice. However, far fewer efforts have been attempted to use genomic resources to study physiological and evolutionary processes of weedy plants. Genomics-based tools such as extensive EST databases and microarrays have been developed for a limited number of weedy species, although application of information and resources developed for model plants and crops are possible and have been exploited. These tools have just begun to provide insights into the response of these weeds to herbivore and pathogen attack, survival of extreme environmental conditions, and interaction with crops. The potential of these tools to illuminate mechanisms controlling the traits that allow weeds to invade novel habitats, survive extreme environments, and that make weeds difficult to eradicate have potential for both improving crops and developing novel methods to control weeds.

  2. 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

  3. How a Deweyan Science Education Further Enables Ethics Education

    ERIC Educational Resources Information Center

    Webster, Scott

    2008-01-01

    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…

  4. 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.

  5. 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.

  6. 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

  7. Psychiatric Genomics and Mental Health Treatment: Setting the Ethical Agenda.

    PubMed

    Kong, Camillia; Dunn, Michael; Parker, Michael

    2017-04-01

    Realizing the benefits of translating psychiatric genomics research into mental health care is not straightforward. The translation process gives rise to ethical challenges that are distinctive from challenges posed within psychiatric genomics research itself, or that form part of the delivery of clinical psychiatric genetics services. This article outlines and considers three distinct ethical concerns posed by the process of translating genomic research into frontline psychiatric practice and policy making. First, the genetic essentialism that is commonly associated with the genomics revolution in health care might inadvertently exacerbate stigma towards people with mental disorders. Secondly, the promises of genomic medicine advance a narrative of individual empowerment. This narrative could promote a fatalism towards patients' biology in ways that function in practice to undermine patients' agency and autonomy, or, alternatively, a heightened sense of subjective genetic responsibility could become embedded within mental health services that leads to psychosocial therapeutic approaches and the clinician-patient therapeutic alliance being undermined. Finally, adopting a genomics-focused approach to public mental health risks shifting attention away from the complex causal relationships between inequitable socio-economic, political, and cultural structures and negative mental health outcomes. The article concludes by outlining a number of potential pathways for future ethics research that emphasizes the importance of examining appropriate translation mechanisms, the complementarity between genetic and psychosocial models of mental disorder, the implications of genomic information for the clinician-patient relationship, and funding priorities and resource allocation decision making in mental health.

  8. 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.

  9. 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.

  10. The Human Genome Project: ethical and social implications.

    PubMed

    Murray, T H; Livny, E

    1995-01-01

    This article explores some of the potential moral and social ramifications of the Human Genome Project. Research on the human genome is generating important ethical and social questions of at least three distinct kinds. First, what genetic information should be generated, and who should control its dissemination and use? Improved diagnostic techniques such as presymptomatic testing, carrier screening, and prenatal screening can provide information that poses significant ethical problems for individuals, employers and insurance companies, and the medical and counseling professions. Second, what genetic procedures should be employed? The burgeoning ability to manipulate human genotypes and phenotypes through procedures such as gene therapy and enzyme therapy are leading to difficult questions about which manipulations should be permitted and which should be prohibited. Third, how will this new information change lives? Increasing claims about the relationship of genetics to ethically and politically significant traits and behaviors are challenging human self-understanding and the capacity of social institutions to respond adequately.

  11. The Human Genome Project: ethical and social implications.

    PubMed Central

    Murray, T H; Livny, E

    1995-01-01

    This article explores some of the potential moral and social ramifications of the Human Genome Project. Research on the human genome is generating important ethical and social questions of at least three distinct kinds. First, what genetic information should be generated, and who should control its dissemination and use? Improved diagnostic techniques such as presymptomatic testing, carrier screening, and prenatal screening can provide information that poses significant ethical problems for individuals, employers and insurance companies, and the medical and counseling professions. Second, what genetic procedures should be employed? The burgeoning ability to manipulate human genotypes and phenotypes through procedures such as gene therapy and enzyme therapy are leading to difficult questions about which manipulations should be permitted and which should be prohibited. Third, how will this new information change lives? Increasing claims about the relationship of genetics to ethically and politically significant traits and behaviors are challenging human self-understanding and the capacity of social institutions to respond adequately. PMID:7703933

  12. 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.

  13. 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

  14. 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…

  15. 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.

  16. 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

    2014-08-21

    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.

  17. 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.

  18. 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.

  19. 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…

  20. How to Have a Successful Science and Ethics Discussion

    ERIC Educational Resources Information Center

    Chowning, Jeanne Ting

    2005-01-01

    Some teachers are uncomfortable with teaching ethics, a subject that science teachers often have very little experience with. Ethics as a discipline is full of unfamiliar terms and its own jargon. Other teachers fear classroom discussions getting out of control, degenerating into a battle of opinions, or having parents and administrators confuse…

  1. 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…

  2. Ethical Issues of Scientific Inquiry in Health Science Education.

    ERIC Educational Resources Information Center

    Pigg, R. Morgan, Jr., Ed.

    1994-01-01

    This monograph contains 13 papers on the ethics of planning, conducting, and reporting research in health sciences education. It includes four background papers and nine perspective papers. The titles are: (1) "The Imperative for Ethical Conduct in Scientific Inquiry" (Steve M. Dorman); (2) "Fundamental Principles of Ethical…

  3. Interventions in the human genome: some moral and ethical considerations.

    PubMed

    Richter, G; Bacchetta, M D

    1998-06-01

    In the debate regarding the different possibilities for gene therapy, it is presupposed that the manipulations are limited to the nuclear genome (nDNA). Given recent advances in genetics, mitochondrial genome (mtDNA) and diseases must be considered as well. In this paper, we propose a three dimensional framework for the ethical debate of gene therapy where we add the genomic type (nDNA vs. mtDNA) as a third dimension to be considered beside the paradigmatic dimensions of target cell (somatic vs. germ-line) and purpose (therapeutic vs. enhancement). Somatic gene therapy can be viewed today as generally accepted, and we review the contemporary arguments surrounding it on the basis of bioethical-pragmatic, socio-political and deontological classifications. Many of the supposed ethical questions of somatic gene therapy today are not new; they are well-known issues of research ethics. We also critically summarize the different international perspectives and the German ethical discussion regarding manipulations of germ-line cells.

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

    NASA Astrophysics Data System (ADS)

    Rhee, Hyang-yon; Choi, Kyunghee

    2014-05-01

    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 problem-based learning (PBL) which was performed as an iterative process during two cycles. A total of 23 and 29 prospective teachers in each cycle performed team activities. A PBL-based ST ethics education program for the science classroom setting was effective in enhancing participants' perceptions of ethics and education in ST. These perceptions motivated prospective science teachers to develop and implement ST ethics education in their future classrooms. The change in the prospective teachers' perceptions of ethical issues and the need for ethics education was greater when the topic was controversial.

  5. The ‘thousand-dollar genome': an ethical exploration

    PubMed Central

    Dondorp, Wybo J; de Wert, Guido M W R

    2013-01-01

    Sequencing an individual's complete genome is expected to be possible for a relatively low sum ‘one thousand dollars' within a few years. Sequencing refers to determining the order of base pairs that make up the genome. The result is a library of three billion letter combinations. Cheap whole-genome sequencing is of greatest importance to medical scientific research. Comparing individual complete genomes will lead to a better understanding of the contribution genetic variation makes to health and disease. As knowledge increases, the ‘thousand-dollar genome' will also become increasingly important to healthcare. The applications that come within reach raise a number of ethical questions. This monitoring report addresses the issue. PMID:23677179

  6. [Research ethics in social sciences--new challenges].

    PubMed

    Diniz, Debora

    2008-01-01

    This paper aims to discuss how already established principles of research ethics can be incorporated to the ethical review of research projects in Social Sciences, particularly ethnographic studies or studies using the techniques of participant observation and open interviews. The discussion is guided by an analysis of the methodological and ethical procedures used in the production of the ethnographic documentary "Severina's Story". The analysis of the film shows the urgent need to expand the horizons of the debate around research ethics beyond the biomedical fundaments of this field.

  7. 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...

  8. 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.

  9. 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

  10. The ethics of functional genomics: same, same, but different?

    PubMed

    Hoeyer, Klaus; Koch, Lene

    2006-09-01

    Respect for human life--a notion of worth uniting all members of the human race--constitutes a sense of anthropocentrism that has long been the justification for the enrollment of animals in experimentation executed to develop therapies to alleviate human suffering. Currently, however, advances in functional genomics are causing a qualitative transformation of the rationale for medical research performed on animals. The notion of human distinctness is being fundamentally challenged when gene sequences similar to those found in humans are identified in different species. In this Opinion article, we would like to highlight an inherent tension brought about by the current developments in functional genomics: a tension between the scientific and the ethical status of gene sequences. Is it reasonable to argue that they are the same for all practical purposes but different in ethical status?

  11. 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.

  12. 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.

  13. 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."

  14. 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…

  15. 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…

  16. Professional Ethics in the College and University Science Curriculum

    NASA Astrophysics Data System (ADS)

    Kovac, Jeffrey

    Scientific ethics is a subset of professional ethics, the special rules of conduct adopted by those engaged in one of the pursuits regarded as professions, such as law, medicine, engineering and science. Professional ethics derive from a moral ideal based on service. This ideal leads to a pair of bargains: an internal bargain that defines the internal code of practice within the profession, and an external bargain that defines the relationship between the profession and society. This article develops the internal and external bargains that are the basis of scientific ethics from both an historical and a philosophical perspective and makes suggestions as to how the teaching of scientific ethics can be integrated into the undergraduate curriculum.

  17. Socioscience and Ethics in Science Classrooms: Teacher Perspectives and Strategies

    ERIC Educational Resources Information Center

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

    2006-01-01

    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…

  18. 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.

  19. 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.

  20. Ethics of modifying the mitochondrial genome.

    PubMed

    Bredenoord, A L; Dondorp, W; Pennings, G; De Wert, G

    2011-02-01

    Recent preclinical studies have shown the feasibility of specific variants of nuclear transfer to prevent mitochondrial DNA disorders. Nuclear transfer could be a valuable reproductive option for carriers of mitochondrial mutations. A clinical application of nuclear transfer, however, would entail germ-line modification, more specifically a germ-line modification of the mitochondrial genome. One of the most prominent objections against germ-line modification is the fear that it would become possible to alter 'essential characteristics' of a future person, thereby possibly violating the child's right to an open future. As only the nuclear DNA would contain the ingredients for individual characteristics, modification of the mtDNA is often considered less controversial than modification of the nuclear DNA. This paper discusses the tenability of this dichotomy. After having clarified the concept of germ-line modification, it argues that modification of the mtDNA is not substantively different from modification of the nuclear DNA in terms of its effects on the identity of the future person. Subsequently the paper assesses how this conclusion affects the moral evaluation of nuclear transfer to prevent mtDNA disorders. It concludes that the moral acceptability of germ-line modification does not depend on whether it alters the identity of the future child-all germ-line modifications do-but on whether it safeguards the child's right to an open future. If nuclear transfer to prevent mtDNA disorders becomes safe and effective, then dismissing it because it involves germ-line modification is unjustified.

  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. Personalized Medicine in a New Genomic Era: Ethical and Legal Aspects.

    PubMed

    Shoaib, Maria; Rameez, Mansoor Ali Merchant; Hussain, Syed Ather; Madadin, Mohammed; Menezes, Ritesh G

    2016-11-28

    The genome of two completely unrelated individuals is quite similar apart from minor variations called single nucleotide polymorphisms which contribute to the uniqueness of each and every person. These single nucleotide polymorphisms are of great interest clinically as they are useful in figuring out the susceptibility of certain individuals to particular diseases and for recognizing varied responses to pharmacological interventions. This gives rise to the idea of 'personalized medicine' as an exciting new therapeutic science in this genomic era. Personalized medicine suggests a unique treatment strategy based on an individual's genetic make-up. Its key principles revolve around applied pharmaco-genomics, pharmaco-kinetics and pharmaco-proteomics. Herein, the ethical and legal aspects of personalized medicine in a new genomic era are briefly addressed. The ultimate goal is to comprehensively recognize all relevant forms of genetic variation in each individual and be able to interpret this information in a clinically meaningful manner within the ambit of ethical and legal considerations. The authors of this article firmly believe that personalized medicine has the potential to revolutionize the current landscape of medicine as it makes its way into clinical practice.

  3. Ethics: The Failure of Positivist Science.

    ERIC Educational Resources Information Center

    Lincoln, Yvonna S.; Guba, Egon G.

    The central failure of conventional, or positivistic inquiry has been the inability to handle deception in research and the violation of societal ethics, moral and legal caused by such deception. Moral dimensions include tests for whether the research would be approved by reasonable persons, whether it might pass the test of publicity, and whether…

  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. [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.

  6. 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…

  7. 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.

  8. [Ethics of space life science research with animals].

    PubMed

    Kasatkina, T B; Kaplanskiĭ, A S

    2000-01-01

    The authors present a historical sketch on the ethics of use of animals in life sciences experiments. Experiments with animals are necessary to expand knowledge in the field of life sciences including the space ones, and health service. It is emphasized that these experiments must be performed with observance of certain moral rules and utilize minimum animals suffice to obtain statistically significant data. The first draft of SRC-IBMP Guidelines on the use of laboratory animals has been published.

  9. 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…

  10. The ethics of smart cities and urban science.

    PubMed

    Kitchin, Rob

    2016-12-28

    Software-enabled technologies and urban big data have become essential to the functioning of cities. Consequently, urban operational governance and city services are becoming highly responsive to a form of data-driven urbanism that is the key mode of production for smart cities. At the heart of data-driven urbanism is a computational understanding of city systems that reduces urban life to logic and calculative rules and procedures, which is underpinned by an instrumental rationality and realist epistemology. This rationality and epistemology are informed by and sustains urban science and urban informatics, which seek to make cities more knowable and controllable. This paper examines the forms, practices and ethics of smart cities and urban science, paying particular attention to: instrumental rationality and realist epistemology; privacy, datafication, dataveillance and geosurveillance; and data uses, such as social sorting and anticipatory governance. It argues that smart city initiatives and urban science need to be re-cast in three ways: a re-orientation in how cities are conceived; a reconfiguring of the underlying epistemology to openly recognize the contingent and relational nature of urban systems, processes and science; and the adoption of ethical principles designed to realize benefits of smart cities and urban science while reducing pernicious effects.This article is part of the themed issue 'The ethical impact of data science'.

  11. Good ethics can sometimes mean better science: research ethics and the Milgram experiments.

    PubMed

    McArthur, Dan

    2009-03-01

    All agree that if the Milgram experiments were proposed today they would never receive approval from a research ethics board. However, the results of the Milgram experiments are widely cited across a broad range of academic literature from psychology to moral philosophy. While interpretations of the experiments vary, few commentators, especially philosophers, have expressed doubts about the basic soundness of the results. What I argue in this paper is that this general approach to the experiments might be in error. I will show that the ethical problems that would prevent the experiments from being approved today actually have an effect on the results such that the experiments might show less than many currently suppose. Making this case demonstrates two conclusions. The first is that there are good reasons to think that the conclusions of many of Milgram's commentators might be too strong. The second conclusion is a more general one. The ethics procedures commonly used by North American research ethics boards serve not only to protect human participants in research but also can sometimes help secure, to an extent, the integrity of results. In other words, good ethics can sometimes mean better science.

  12. Frequently Asked Questions about Genetic and Genomic Science

    MedlinePlus

    ... used on this page Frequently Asked Questions About Genetic and Genomic Science What are genetics and genomics? ... genetic and genomic technologies? Additional Resources What are genetics and genomics? Genetics is a term that refers ...

  13. 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.

  14. Rethinking the Ethics of Scientific Knowledge: A Case Study of Teaching the Environment in Science Classrooms

    ERIC Educational Resources Information Center

    Kim, Mijung; Roth, Wolff-Michael

    2008-01-01

    In this paper we argue that scientific literacy ought to be rethought in that it involves ethics as its core element. Considering the fact that science education has addressed ethical dilemmas of Science, Technology, Society and Environment (STSE) issues, it is worthwhile to question what the ethics of scientific knowledge mean in terms of their…

  15. 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…

  16. Toxic ethics: environmental genomics and the health of populations.

    PubMed

    Robert, Jason Scott; Smith, Andrea

    2004-11-01

    Dealing primarily with implications rather than foundations, and focusing downstream at the expense of upstream prevention, mainstream bioethics is at a toxic watershed. Through an extended analysis of the Environmental Genome Project (EGP), we offer new tools from the philosophy of science and from critical epidemiology to help bioethics to move ahead. Our aim in this paper is not to resolve the moral and conceptual problems we reveal, but rather to outline ways to prevent such problems from arising in future research.

  17. Normative ethics does not need a foundation: it needs more science.

    PubMed

    Quintelier, Katinka; Van Speybroeck, Linda; Braeckman, Johan

    2011-03-01

    The impact of science on ethics forms since long the subject of intense debate. Although there is a growing consensus that science can describe morality and explain its evolutionary origins, there is less consensus about the ability of science to provide input to the normative domain of ethics. Whereas defenders of a scientific normative ethics appeal to naturalism, its critics either see the naturalistic fallacy committed or argue that the relevance of science to normative ethics remains undemonstrated. In this paper, we argue that current scientific normative ethicists commit no fallacy, that criticisms of scientific ethics contradict each other, and that scientific insights are relevant to normative inquiries by informing ethics about the options open to the ethical debate. Moreover, when conceiving normative ethics as being a nonfoundational ethics, science can be used to evaluate every possible norm. This stands in contrast to foundational ethics in which some norms remain beyond scientific inquiry. Finally, we state that a difference in conception of normative ethics underlies the disagreement between proponents and opponents of a scientific ethics. Our argument is based on and preceded by a reconsideration of the notions naturalistic fallacy and foundational ethics. This argument differs from previous work in scientific ethics: whereas before the philosophical project of naturalizing the normative has been stressed, here we focus on concrete consequences of biological findings for normative decisions or on the day-to-day normative relevance of these scientific insights.

  18. A Blueprint for Genomic Nursing Science

    PubMed Central

    Calzone, Kathleen A.; Jenkins, Jean; Bakos, Alexis D.; Cashion, Ann; Donaldson, Nancy; Feero, Greg; Feetham, Suzanne; Grady, Patricia A.; Hinshaw, Ada Sue; Knebel, Ann R.; Robinson, Nellie; Ropka, Mary E.; Seibert, Diane; Stevens, Kathleen R.; Tully, Lois A.; Webb, Jo Ann

    2012-01-01

    Purpose This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. Organizing Constructs A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. Findings The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. Conclusions The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the

  19. 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

  20. 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.

  1. 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.

  2. The walkshop approach to science and technology ethics.

    PubMed

    Wickson, Fern; Strand, Roger; Kjølberg, Kamilla Lein

    2015-02-01

    In research and teaching on ethical aspects of emerging sciences and technologies, the structure of working environments, spaces and relationships play a significant role. Many of the routines and standard practices of academic life, however, do little to actively explore and experiment with these elements. They do even less to address the importance of contextual and embodied dimensions of thinking. To engage these dimensions, we have benefitted significantly from practices that take us out of seminar rooms, offices and laboratories as well as beyond traditional ways of working and interacting. We have called one such practice the 'walkshop'. Through walkshops, we have spent several days walking together with our colleagues and students in open outdoor spaces, keeping a sustained intellectual discussion on ethical aspects of science, technology and innovation while moving through these landscapes. For us, this has generated useful opportunities to escape established hierarchies, roles and patterns of thought and to rethink conceptual and philosophical issues from new perspectives, under new attitudes and with renewed energy. In this paper we wish to highlight the potential benefits of the walkshop approach by sharing some of our experiences and describing how we have prepared for and carried out these events. We share this information in the hope that we may encourage others to both experiment with the walkshop approach and exchange information on their own innovative processes for research and teaching in science and engineering ethics.

  3. 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

  4. 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."

  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. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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…

  11. 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.

  12. 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.

  13. The social and ethical issues of post-genomic human biobanks.

    PubMed

    Cambon-Thomsen, Anne

    2004-11-01

    Biobanking - the organized collection of biological samples and associated data - ranges in scope from small collections of samples in academic or hospital settings to large-scale national repositories. Biobanks raise many ethical concerns, to which authorities are responding by introducing specific regulations. Genomics research, which thrives on the sharing of samples and information, is affected by two prominent ethical questions: do ethical principles prevent or promote the sharing of stored biological resources? How does the advent of large-scale biobanking alter the way in which ethical issues are addressed?

  14. Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.

    PubMed

    Wang, Shuang; Jiang, Xiaoqian; Singh, Siddharth; Marmor, Rebecca; Bonomi, Luca; Fox, Dov; Dow, Michelle; Ohno-Machado, Lucila

    2017-01-01

    Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy-preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real-world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy-preserving genotype-phenotype linkage in biomedical research.

  15. Field and Experience Influences on Ethical Decision-Making in the Sciences

    PubMed Central

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

    2009-01-01

    Differences across fields and experience levels are frequently considered in discussions of ethical decision-making and ethical behavior. In the present study, doctoral students in the health, biological, and social sciences completed measures of ethical decision-making. The effects of field and level of experience with respect to ethical decision-making, metacognitive reasoning strategies, social-behavioral responses, and exposure to unethical events were examined. Social and biological scientists performed better than health scientists with respect to ethical decision-making. Furthermore, the ethical decision-making of health science students decreased as experience increased. Moreover, these effects appeared to be linked to the specific strategies underlying participants' ethical decision-making. The implications of these findings for ethical decision-making are discussed. PMID:19750129

  16. 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…

  17. A Gendered Approach to Science Ethics for US and UK Physicists.

    PubMed

    Ecklund, Elaine Howard; Di, Di

    2017-02-01

    Some research indicates that women professionals-when compared to men-may be more ethical in the workplace. Existing literature that discusses gender and ethics is confined to the for-profit business sector and primarily to a US context. In particular, there is little attention paid to gender and ethics in science professions in a global context. This represents a significant gap, as science is a rapidly growing and global professional sector, as well as one with ethically ambiguous areas. Adopting an international comparative perspective, this paper relies on 121 semi-structured interviews with US and UK academic physicists to examine how physicists perceive the impact of gender on science ethics. Findings indicate that some US and UK physicists believe that female scientists handle ethical issues within science in a feminine way whereas their male colleagues approach ethics in a masculine way. Some of these physicists further claim that these different approaches to science ethics lead to male and female scientists' different levels of competitiveness in academic physics. In both the US and the UK, there are "gender-blind" physicists, who do not think gender is related to professional ethics. Relying on physicists' nuanced descriptions this paper contributes to the current understanding of gender and science and engineering ethics.

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

    PubMed Central

    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. PMID:26479558

  19. 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.

  20. 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.

  1. 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

  2. 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

  3. 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

  4. 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.

  5. 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.

  6. 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…

  7. 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.

  8. 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.

  9. 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.

  10. Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report

    PubMed Central

    Carrieri, D; Bewshea, C; Walker, G; Ahmad, T; Bowen, W; Hall, A; Kelly, S

    2016-01-01

    Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research. PMID:27677925

  11. The ethics of gene therapy.

    PubMed

    Chan, Sarah; Harris, John

    2006-10-01

    Recent developments have progressed in areas of science that pertain to gene therapy and its ethical implications. This review discusses the current state of therapeutic gene technologies, including stem cell therapies and genetic modification, and identifies ethical issues of concern in relation to the science of gene therapy and its application, including the ethics of embryonic stem cell research and therapeutic cloning, the risks associated with gene therapy, and the ethics of clinical research in developing new therapeutic technologies. Additionally, ethical issues relating to genetic modification itself are considered: the significance of the human genome, the distinction between therapy and enhancement, and concerns regarding gene therapy as a eugenic practice.

  12. A need for a code of ethics in science communication?

    NASA Astrophysics Data System (ADS)

    Benestad, R. E.

    2009-09-01

    The modern western civilization and high standard of living are to a large extent the 'fruits' of scientific endeavor over generations. Some examples include the longer life expectancy due to progress in medical sciences, and changes in infrastructure associated with the utilization of electromagnetism. Modern meteorology is not possible without the state-of-the-art digital computers, satellites, remote sensing, and communications. Science also is of relevance for policy making, e.g. the present hot topic of climate change. Climate scientists have recently become much exposed to media focus and mass communications, a task for which many are not trained. Furthermore, science, communication, and politics have different objectives, and do not necessarily mix. Scientists have an obligation to provide unbiased information, and a code of ethics is needed to give a guidance for acceptable and unacceptable conduct. Some examples of questionable conduct in Norway include using the title 'Ph.D' to imply scientific authority when the person never had obtained such an academic degree, or writing biased and one-sided articles in Norwegian encyclopedia that do not reflect the scientific consensus. It is proposed here that a set of guide lines (for the scientists and journalists) and a code of conduct could provide recommendation for regarding how to act in media - similar to a code of conduct with respect to carrying out research - to which everyone could agree, even when disagreeing on specific scientific questions.

  13. 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,…

  14. 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.

  15. Computer Ethics: New Study Area for Engineering Science Students

    ERIC Educational Resources Information Center

    Johnson, Deborah G.

    1978-01-01

    Computer professionals are beginning to look toward codes of ethics and legislation to control the use of software. A project has been established at Rensselaer Polytechnic Institute to develop teaching materials on computer ethics. (BB)

  16. 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.

  17. 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

  18. [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.

  19. Ethics in the Supervisory Relationship: Supervisors' and Doctoral Students' Dilemmas in the Natural and Behavioural Sciences

    ERIC Educational Resources Information Center

    Löfström, Erika; Pyhältö, Kirsi

    2017-01-01

    This study explored the perceptions of ethical issues in supervision among doctoral students and supervisors. The nature of ethical issues identified by doctoral students (n = 28) and their supervisors (n = 14) is explored and the degree of fit and misfit between their perceptions in two cases representing the natural and behavioural sciences is…

  20. 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…

  1. 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

  2. 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.

  3. 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

  4. 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).

  5. 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.

  6. Human genome sciences starts year in high gear

    SciTech Connect

    Fox, J.L.

    1996-03-01

    This article describes the current success and development of the company known as Human Genome Sciences (HGS, Rockville, MD). The research collaboration with agricultural giant Pioneer Hi-Bred to study the corn genome will bring $16 million to HGS over the next three years. Despite these plant and microbial projects, however, the company`s focus remains on medical applications of genome biology.

  7. Developing a Scientific Virtue-Based Approach to Science Ethics Training.

    PubMed

    Pennock, Robert T; O'Rourke, Michael

    2017-02-01

    Responsible conduct of research training typically includes only a subset of the issues that ought to be included in science ethics and sometimes makes ethics appear to be a set of externally imposed rules rather than something intrinsic to scientific practice. A new approach to science ethics training based upon Pennock's notion of the scientific virtues may help avoid such problems. This paper motivates and describes three implementations-theory-centered, exemplar-centered, and concept-centered-that we have developed in courses and workshops to introduce students to this scientific virtue-based approach.

  8. 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.

  9. Evoking vigilance: Would you (dis)trust a scientist who discusses ethical implications of research in a science blog?

    PubMed

    Hendriks, Friederike; Kienhues, Dorothe; Bromme, Rainer

    2016-11-01

    The experimental studies presented here investigated whether discussing ethical implications of preliminary scientific results in a science blog would impact blog readers' perception of the responsible scientist blogger's epistemic trustworthiness (on the dimensions expertise, integrity, and benevolence). They also investigated whether it made a difference in who had brought forward the ethics aspects: the responsible scientist blogger or another expert. Results indicate that by the mere introduction of ethics, people infer something about the blogger's communicative intentions: Introducing ethical aspects seems to raise vigilance about an expert's benevolence and integrity. Moreover, ratings of epistemic trustworthiness differed depending on who added ethical arguments: If ethics were introduced by the scientist blogger himself, his benevolence and integrity were rated higher than when ethics were introduced by another expert. These results are relevant for science bloggers, science communicators, and researchers who study laypeople's understanding of epistemic uncertainty within science.

  10. [From human genome to man-made life: J. Craig Venter leads the life sciences].

    PubMed

    Sun, Mingwei; Li, Yin; Gao, George F

    2010-06-01

    For the first time ever, the scientists of J. Craig Venter team have created actual self-replicating synthetic life. The research was just published in the Journal of Science on May 20, 2010. Although this news immediately brings the worry about the possible potential threat to biosecurity and biosafety as well as the ethical disputes, it yet indicates that mankind have made a new step forward in synthetic biology. In the time of post-genome era, we believe the advancement of synthetic biology that might affect or change the future life of human being will be widely used in energy, environment, materials, medication and many other fields.

  11. 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.

  12. Academic Freedom, Innovation, and Responsibility: Towards an "Ethical GPS" in Higher Education and Science

    ERIC Educational Resources Information Center

    Sadlak, Jan; Ratajczak, Henryk

    2004-01-01

    In lieu of the usual "From the Editors" piece, Jan Sadlak, Director of UNESCO-CEPES, and Henryk Ratajczak, Vice-President of the European Academy of Arts, Sciences and Humanities (EAASH), describe below the scope and highlights of the International Conference on Ethical and Moral Dimensions for Higher Education and Science in Europe,…

  13. 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.…

  14. 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…

  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. Goodbye genome paper, hello genome report: the increasing popularity of 'genome announcements' and their impact on science.

    PubMed

    Smith, David Roy

    2016-06-23

    Next-generation sequencing technologies have revolutionized genomics and altered the scientific publication landscape. Life-science journals abound with genome papers-peer-reviewed descriptions of newly sequenced chromosomes. Although they once filled the pages of Nature and Science, genome papers are now mostly relegated to journals with low-impact factors. Some have forecast the death of the genome paper and argued that they are using up valuable resources and not advancing science. However, the publication rate of genome papers is on the rise. This increase is largely because some journals have created a new category of manuscript called genome reports, which are short, fast-tracked papers describing a chromosome sequence(s), its GenBank accession number and little else. In 2015, for example, more than 2000 genome reports were published, and 2016 is poised to bring even more. Here, I highlight the growing popularity of genome reports and discuss their merits, drawbacks and impact on science and the academic publication infrastructure. Genome reports can be excellent assets for the research community, but they are also being used as quick and easy routes to a publication, and in some instances they are not peer reviewed. One of the best arguments for genome reports is that they are a citable, user-generated genomic resource providing essential methodological and biological information, which may not be present in the sequence database. But they are expensive and time-consuming avenues for achieving such a goal.

  17. Inclusion of policies on ethical standards in animal experiments in biomedical science journals.

    PubMed

    Rands, Sean A

    2011-11-01

    Most published biomedical research involving animal models is evaluated carefully to ensure that appropriate ethical standards are met. In the current study, 500 journals randomly selected from MedLine were assessed for whether they presented animal research. Of the 138 journals that did, the instructions to authors of 85 (61.6%) included a requirement for author assurance of adherence to ethical standards during experiments involving animals. In comparison to a wider range of biologic journals, biomedical science journals were more likely to have some sort of ethical policy concerning the reporting and presentation of animal experiments.

  18. Understanding bureaucracy in health science ethics: toward a better institutional review board.

    PubMed

    Bozeman, Barry; Slade, Catherine; Hirsch, Paul

    2009-09-01

    Research involving human participants continues to grow dramatically, fueled by advances in medical technology, globalization of research, and financial and professional incentives. This creates increasing opportunities for ethical errors with devastating effects. The typical professional and policy response to calamities involving human participants in research is to layer on more ethical guidelines or strictures. We used a recent case-the Johns Hopkins University/Kennedy Kreiger Institute Lead Paint Study-to examine lessons learned since the Tuskegee Syphilis Study about the role of institutionalized science ethics in the protection of human participants in research. We address the role of the institutional review board as the focal point for policy attention.

  19. For an ethics of promising, or: a few kind words about James Watson.

    PubMed

    Fortun, Mike

    2005-01-01

    This essay questions some of the limits that both science studies and bioethics have assumed in their engagements with technoscience, and genomics in particular. It argues that these disciplines have privileged an "ethics of suspicion" regarding technoscience, and argues that this is ill-suited to promissory sciences such as genomics. The essay begins to develop elements of an "ethics of friendship" toward genomics, using examples from toxicogenomics and behavioral genetics, to suggest what an ethics of promising might involve.

  20. 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

  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. Teaching animal welfare science, ethics, and law to veterinary students in the United kingdom.

    PubMed

    Main, David C J; Thornton, P; Kerr, K

    2005-01-01

    Teaching veterinary students about animal welfare science, ethics, and law has been identified as a priority of the veterinary curriculum. Suggested content for such a course, the stage at which it should be taught, and possible methods of teaching and assessing the subject have been outlined. Critically, such a course needs to address the quantification of the impact of humans on animals (welfare science), the analysis of our moral obligations (welfare ethics), and knowledge of minimum welfare standards (welfare legislation). A mixture of both teaching methods and assessment techniques is needed to ensure that sufficient skills and knowledge and a deeper understanding are achieved.

  3. Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems.

    PubMed

    Leonelli, Sabina

    2016-12-28

    The distributed and global nature of data science creates challenges for evaluating the quality, import and potential impact of the data and knowledge claims being produced. This has significant consequences for the management and oversight of responsibilities and accountabilities in data science. In particular, it makes it difficult to determine who is responsible for what output, and how such responsibilities relate to each other; what 'participation' means and which accountabilities it involves, with regard to data ownership, donation and sharing as well as data analysis, re-use and authorship; and whether the trust placed on automated tools for data mining and interpretation is warranted (especially as data processing strategies and tools are often developed separately from the situations of data use where ethical concerns typically emerge). To address these challenges, this paper advocates a participative, reflexive management of data practices. Regulatory structures should encourage data scientists to examine the historical lineages and ethical implications of their work at regular intervals. They should also foster awareness of the multitude of skills and perspectives involved in data science, highlighting how each perspective is partial and in need of confrontation with others. This approach has the potential to improve not only the ethical oversight for data science initiatives, but also the quality and reliability of research outputs.This article is part of the themed issue 'The ethical impact of data science'.

  4. 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.

  5. Ethical and philosophical consideration of the dual-use dilemma in the biological sciences.

    PubMed

    Miller, Seumas; Selgelid, Michael J

    2007-12-01

    The dual-use dilemma arises in the context of research in the biological and other sciences as a consequence of the fact that one and the same piece of scientific research sometimes has the potential to be used for bad as well as good purposes. It is an ethical dilemma since it is about promoting good in the context of the potential for also causing harm, e.g., the promotion of health in the context of providing the wherewithal for the killing of innocents. It is an ethical dilemma for the researcher because of the potential actions of others, e.g., malevolent non-researchers who might steal dangerous biological agents, or make use of the original researcher's work. And it is a dilemma for governments concerned with the security of their citizens, as well as their health. In this article we construct a taxonomy of types of "experiments of concern" in the biological sciences, and thereby map the terrain of ethical risk. We then provide a series of analyses of the ethical problems and considerations at issue in the dual-use dilemma, including the impermissibility of certain kinds of research and possible restrictions on dissemination of research results given the risks to health and security. Finally, we explore the main available institutional responses to some of the specific ethical problems posed by the dual-use dilemma in the biological sciences.

  6. Public attitudes to genomic science: an experiment in information provision.

    PubMed

    Sturgis, Patrick; Brunton-Smith, Ian; Fife-Schaw, Chris

    2010-03-01

    We use an experimental panel study design to investigate the effect of providing "value-neutral" information about genomic science in the form of a short film to a random sample of the British public. We find little evidence of attitude change as a function of information provision. However, our results show that information provision significantly increased dropout from the study amongst less educated respondents. Our findings have implications both for our understanding of the knowledge-attitude relationship in public opinion toward genomic science and for science communication more generally.

  7. Bridging the divide between genomic science and indigenous peoples.

    PubMed

    Jacobs, Bette; Roffenbender, Jason; Collmann, Jeff; Cherry, Kate; Bitsói, LeManuel Lee; Bassett, Kim; Evans, Charles H

    2010-01-01

    The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new

  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. 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.

  10. 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

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

    PubMed Central

    Stacey, M

    1985-01-01

    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. PMID:3981563

  12. 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).

  13. 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…

  14. Locating ethics in data science: responsibility and accountability in global and distributed knowledge production systems

    PubMed Central

    2016-01-01

    The distributed and global nature of data science creates challenges for evaluating the quality, import and potential impact of the data and knowledge claims being produced. This has significant consequences for the management and oversight of responsibilities and accountabilities in data science. In particular, it makes it difficult to determine who is responsible for what output, and how such responsibilities relate to each other; what ‘participation’ means and which accountabilities it involves, with regard to data ownership, donation and sharing as well as data analysis, re-use and authorship; and whether the trust placed on automated tools for data mining and interpretation is warranted (especially as data processing strategies and tools are often developed separately from the situations of data use where ethical concerns typically emerge). To address these challenges, this paper advocates a participative, reflexive management of data practices. Regulatory structures should encourage data scientists to examine the historical lineages and ethical implications of their work at regular intervals. They should also foster awareness of the multitude of skills and perspectives involved in data science, highlighting how each perspective is partial and in need of confrontation with others. This approach has the potential to improve not only the ethical oversight for data science initiatives, but also the quality and reliability of research outputs. This article is part of the themed issue ‘The ethical impact of data science’. PMID:28336799

  15. 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…

  16. 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…

  17. 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.…

  18. 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

  19. Dilemmas with Dilemmas...Exploring the Suitability of Dilemma Stories as a Way of Addressing Ethical Issues in Science Education.

    ERIC Educational Resources Information Center

    Settelmaier, Elisabeth

    Traditionally, many science educators have taught science without addressing ethical questions. However, the inclusion of moral discourse in science teaching may help educators to bring to the fore problematic issues in relation to science, and it may offer an opportunity for students to practice their future engagement in the public discourse…

  20. 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

  1. 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

  2. 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.

  3. 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.

  4. 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.

  5. 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

  6. The ethics of data and of data science: an economist's perspective.

    PubMed

    Cave, Jonathan

    2016-12-28

    Data collection and modelling are increasingly important in social science and science-based policy, but threaten to crowd out other ways of thinking. Economists recognize that markets embody and shed light on human sentiments. However, their ethical consequences have been difficult to interpret, let alone manage. Although economic mechanisms are changed by data intensity, they can be redesigned to restore their benefits. We conclude with four cautions: if data are good, more may not be better; scientifically desirable data properties may not help policy; consent is a double-edged tool; and data exist only because someone thought to capture and codify them.This article is part of the themed issue 'The ethical impact of data science'.

  7. 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.

  8. Ethics.

    PubMed

    Pellegrino, Edmund D

    In this brief annual review of ethical issues in medicine, Pellegrino focuses on two issues, AIDS and surrogate mothers. The AIDS epidemic has generated debate over public health needs vs. individual rights, modification of sexual practices, screening programs to detect infected persons, confidentiality of test results, experimental therapies, and the duty of physicians to care for AIDS patients. Surrogate motherhood arrangements have become one of the more controversial of the new reproductive technologies. The publicity that accompanied the custody battle over New Jersey's "Baby M" intensified debate over the commercialization of childbearing and the regulation of reproduction. Pellegrino concludes that physicians, along with ethicists and policymakers, have an obligation to "lead society in careful and judicious deliberation" of the ethical issues raised by AIDS and by reproductive technologies.

  9. Recent Studies of Research Ethics at the National Academy of Sciences

    NASA Astrophysics Data System (ADS)

    Bissell, Richard

    2012-01-01

    Over the last few years, the National Academy of Sciences/National Research Council has been asked to revisit some of the core ethical issues for science that had not been properly explored since the 1990s. Some of the interest in this area related to the impact of technology changes in the sciences (e.g., management of massive data bases) and some to institutional changes (e.g., globalization of research teams, emergence of new scientific powers abroad, and new models in the publishing industry). As a result, a series of authoritative reports from the Academies’ Committee on Science, Engineering and Public Policy have been developed by expert committees and published - the third edition of On Being A Scientist (2009), a report on Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age (2009), and underway there is a new edition of Responsible Science: Ensuring the Integrity of the Research Process (first published in 1992, forthcoming in 2012). It is relevant in this age of global science that the latest edition of OBAS has been translated into multiple foreign languages, and the InterAcademy Council has launched its own project on research ethics with a report due from this multi-science academy body in the 2012-2013 period. Some of the principal findings and issues raised in these reports will be presented by Richard E. Bissell, Executive Director for Policy and Global Affairs at the National Academy of Sciences.

  10. 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.

  11. 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.

  12. Science, politics, and identity in northern research ethics licensing.

    PubMed

    van den Scott, Lisa-Jo K

    2012-02-01

    The Nunavut Research Institute (NRI) is the ethics board that licenses all research conducted in Nunavut, Canada. The NRI is a gate-keeping institution that mediates the interaction of Inuit knowledge systems (presented as experientially based and orally communicated) and researchers (perceived as practicing harsh rationality communicated through inscription). The NRI works to discipline Southern ways of knowing into something more culturally appropriate for the Inuit, but at the same time also disciplines Inuit ways of knowing, creating a paradox even as the Inuit struggle to protect their cultural identity, which has been subject to a history of judgment and cultural appropriation. This article identifies three effects of this paradox on the NRI; the NRI takes on, first, a rigorousness in licensing; second, an emphasis on maximizing benefits to the community; and third, the role of defender of local knowledge.

  13. 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.

  14. Spatially Explicit Data: Stewardship and Ethical Challenges in Science

    PubMed Central

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

    2013-01-01

    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. PMID:24058292

  15. 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.

  16. 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.

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

    PubMed

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

    2016-01-02

    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.

  18. 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

  19. 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.

  20. 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.

  1. 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.

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

    PubMed Central

    Meagher, Karen 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. PMID:26843669

  3. 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

  4. 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.

  5. Human Performance Enhancement for NATO Military Operations (Science, Technology, and Ethics)

    DTIC Science & Technology

    2009-10-01

    to develop a drug known as endomorphin -1 that is based on the naturally occurring pain-control compound in the human brain, but with fewer of the...side effects of morphine. Endomorphin -1 proved to be rapidly metabolized. Subsequently, an analog of endomorphin -1 was developed that has similar...Performance Enhancement for NATO Military Operations (Science, Technology, and Ethics) 34 - 6 RTO-MP-HFM-181 endomorphin analog rewarding, in

  6. 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.

  7. 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."

  8. Genetic testing and Alzheimer disease: recommendations of the Stanford Program in Genomics, Ethics, and Society.

    PubMed

    McConnell, L M; Koenig, B A; Greely, H T; Raffin, T A

    1999-01-01

    Several genes associated with Alzheimer disease (AD) have been localized and cloned; two genetic tests are already commercially available, and new tests are being developed. Genetic testing for AD--either for disease prediction or for diagnosis--raises critical ethical concerns. The multidisciplinary Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society (PGES) presents comprehensive recommendations on genetic testing for AD. The Group concludes that under current conditions, genetic testing for AD prediction or diagnosis is only rarely appropriate. Criteria for judging the readiness of a test for introduction into routine clinical practice typically rely heavily on evaluation of technical efficacy. PGES recommends a broader and more comprehensive approach, considering: 1) the unique social and historical meanings of AD; 2) the availability of procedures to promote good surrogate decision making for incompetent patients and to safeguard confidentiality; 3) access to sophisticated genetic counselors able to communicate complex risk information and effectively convey the social costs and psychological burdens of testing, such as unintentional disclosure of predictive genetic information to family members; 4) protection from inappropriate advertising and marketing of genetic tests; and 5) recognition of the need for public education about the meaning and usefulness of predictive and diagnostic tests for AD. In this special issue of Genetic Testing, the PGES recommendations are published along with comprehensive background papers authored by Working Group members.

  9. After the revolution? Ethical and social challenges in ‘personalized genomic medicine’

    PubMed Central

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

    2013-01-01

    Personalized genomic medicine (PGM) is a goal that currently unites a wide array of biomedical initiatives, and is promoted as a ‘new paradigm for healthcare’ by its champions. Its promissory virtues include individualized diagnosis and risk prediction, more effective prevention and health promotion, and patient empowerment. Beyond overcoming scientific and technological hurdles to realizing PGM, proponents may interpret and rank these promises differently, which carries ethical and social implications for the realization of PGM as an approach to healthcare. We examine competing visions of PGM’s virtues and the directions in which they could take the field, in order to anticipate policy choices that may lie ahead for researchers, healthcare providers and the public. PMID:23662108

  10. 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

  11. 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.

  12. 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 .

  13. On the use and misuse of genomic and neuroimaging science in forensic psychiatry: current roles and future directions.

    PubMed

    Treadway, Michael T; Buckholtz, Joshua W

    2011-07-01

    Dramatic advances in the understanding of the neurobiological bases of human behavior have prompted excitement and controversy surrounding the ethical, legal, and social applications of this knowledge. The authors critically examine the promise and challenges of integrating genomic and neuroimaging techniques into legal settings. They suggest criteria for enhancing the viability of incorporating these data within a legal context and highlight several recent developments that may eventually allow genetic and neuroimaging evidence to meet these criteria and play a more prominent role in forensic science and law.

  14. Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels.

    PubMed

    Isa, Noor Munirah; Hj Safian Shuri, Muhammad Fakhruddin

    2017-03-09

    Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation's traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors' concerns about the main motivations for conducting such research and the extent to which such research will benefit society.

  15. 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

  16. 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

  17. 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.

  18. 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.

  19. 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…

  20. 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…

  1. The Dürrenmatt's ``Physicists'' as a Tool in Understanding the Ethics of Science

    NASA Astrophysics Data System (ADS)

    Kapor, Darko

    2007-04-01

    Part of the course of the History of Physics taught by the author is dedicated to the ethics of science, in particular to moral responsibility of the scientist towards society. In order to make the subject more interesting to the students, the first step is reading the play ``Physicists'' by Friedrich Dürrenmatt (1962). The students are then asked to relate some of the events connected to the nuclear studies before and during the World War II and armaments race with some situations in the play or the author's theses related to it.

  2. The Importance of Animal Welfare Science and Ethics to Veterinary Students in Australia and New Zealand.

    PubMed

    Freire, Rafael; Phillips, Clive J C; Verrinder, Joy M; Collins, Teresa; Degeling, Chris; Fawcett, Anne; Fisher, Andrew D; Hazel, Susan; Hood, Jennifer; Johnson, Jane; Lloyd, Janice K F; Stafford, Kevin; Tzioumis, Vicky; McGreevy, Paul D

    2016-07-21

    The study of animal welfare and ethics (AWE) as part of veterinary education is important due to increasing community concerns and expectations about this topic, global pressures regarding food security, and the requirements of veterinary accreditation, especially with respect to Day One Competences. To address several key questions regarding the attitudes to AWE of veterinary students in Australia and New Zealand (NZ), the authors surveyed the 2014 cohort of these students. The survey aimed (1) to reveal what AWE topics veterinary students in Australia and NZ consider important as Day One Competences, and (2) to ascertain how these priorities align with existing research on how concern for AWE relates to gender and stage of study. Students identified triage and professional ethics as the most important Day One Competences in AWE. Students ranked an understanding of triage as increasingly important as they progressed through their program. Professional ethics was rated more important by early and mid-stage students than by senior students. Understanding the development of animal welfare science and perspectives on animal welfare were rated as being of little importance to veterinary graduates as Day One Competences, and an understanding of "why animal welfare matters" declined as the students progressed through the program. Combined, these findings suggest that veterinary students consider it more important to have the necessary practical skills and knowledge to function as a veterinarian on their first day in practice.

  3. Change and permanence: reflections on the ethical-social contract of science in the public interest.

    PubMed

    Kass, L R

    1981-12-01

    Modern science, dedicated since its 17th century origins to the mastery and possession of nature for the relief of man's estate, is a source of great social change, affecting our opinions, practices, and ways of life. It thus exists necessarily in tension with law and morality, our institutions of stability and order. This tension between change and permanence, between science and law or morals, was institutionalized by the American Founders who sought to encourage, under law, the progress in science and the useful arts, by means of the copyright and patent laws. American science and technology have flourished under the patent law, an ingenious ethical and social contract between scientists and the polity, through which private right and interest and public good generally coincide. Nevertheless, this contract has its limitations. Some of these limitations are vividly seen through the recent Supreme Court decision (in the Chakrabarty case) to permit the patenting of living microorganisms. Analysis of this case shows why the contract between science and the polity embodied in the Patent Laws may not always serve the public good and may also be harmful to science itself. Also, permitting ownership of living species shows how close we have come in our thinking to overstepping the sensible limits of the project for the mastery and possession of nature.

  4. 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.

  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. 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

  7. 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.

  8. 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

  9. 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.

  10. 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.

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

    PubMed

    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.

  13. [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."

  14. 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.

  15. Convergence of advances in genomics, team science, and repositories as drivers of progress in psychiatric genomics.

    PubMed

    Lehner, Thomas; Senthil, Geetha; Addington, Anjené M

    2015-01-01

    After many years of unfilled promise, psychiatric genetics has seen an unprecedented number of successes in recent years. We hypothesize that the field has reached an inflection point through a confluence of four key developments: advances in genomics; the orientation of the scientific community around large collaborative team science projects; the development of sample and data repositories; and a policy framework for sharing and accessing these resources. We discuss these domains and their effect on scientific progress and provide a perspective on why we think this is only the beginning of a new era in scientific discovery.

  16. 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

  17. 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…

  18. 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…

  19. 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…

  20. 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.

  1. 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.

  2. 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

  3. Musings on genome medicine: is there hope for ethical and safe stem cell therapeutics?

    PubMed

    Rao, Mahendra; Condic, Maureen L

    2009-07-14

    Although most stem cell therapy has been non-controversial, therapy based on pluripotent stem cells has raised both ethical and safety concerns. Despite these concerns, the use of cells derived from pluripotent stem cells has recently been approved for clinical trials. We suggest that recent advances in the field have provided avenues to develop pluripotent cells that raise far fewer ethical concerns. Moreover, advances in cell sorting, gene modification and screening have allowed the development of safer therapeutic approaches. Continued advances in this rapidly evolving field are likely to allow therapy to be delivered in a safe and effective manner without socially divisive ethical controversy in the not-so-distant future.

  4. 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?

  5. 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

  6. 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?

  7. 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.

  8. 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".

  9. 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)

  10. The Council for International Organizations and Medical Sciences (CIOMS) guidelines on ethics of clinical trials.

    PubMed

    Macrae, Duncan J

    2007-05-01

    Numerous bodies from many countries, including governments, government regulatory departments, research organizations, medical professional bodies, and health care providers, have issued guidance or legislation on the ethical conduct of clinical trials. It is possible to trace the development of current guidelines back to the post-World War II Nuremburg war crimes trials, more specifically the "Doctors' Trial." From that trial emerged the Nuremburg Code, which set out basic principles to be observed when conducting research involving human subjects and which subsequently formed the basis for comprehensive international guidelines on medical research, such as the Declaration of Helsinki. Most recently, the Council for International Organizations and Medical Sciences (CIOMS) produced detailed guidelines (originally published in 1993 and updated in 2002) on the implementation of the principles outlined in the Declaration of Helsinki. The CIOMS guidelines set in an appropriate context the challenges of present-day clinical research, by addressing complex issues including HIV/AIDS research, availability of study treatments after a study ends, women as research subjects, safeguarding confidentiality, compensation for adverse events, as well guidelines on consent.

  11. 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

  12. Medical profession changes between religion, science, skill, ethics, law and economics.

    PubMed

    Angeletti, L R

    1997-01-01

    How has the medical profession changed during the centuries? How has the evolution of the profession been influenced by the balance of different issues, e.g. magic, religion, philosophy, science, technology, ethics, law and/or economics? One needs to examine many historical changes leading from the hierarchized medicine of Ancient Egypt to the Asklepiadic and Hippocratic medicine at the time of Plato, from the newly organized medicine of the Renaissance to the emerging social medicine of the XIX century, from the nosological medicine centered on the evaluation of the symptoms to the medicine which explores the human body through technologies. Furthermore, an overview from the past to the future should analyze the new doctor-patient relationship in a health system of managed care, between market and solidarity, between the efficientistic guidelines of the providers (hospitals, physicians, etc.) and an anthropocentric view of the rights of the citizen-customers. These problems are presented and discussed by many Authors in three issues of Medicina nei Secoli (II/III.1997-I, 1998) as an aid to understanding what it means to be a physician today, from the past to the future.

  13. Ethical rhetoric: genomics and the moral content of UNESCO's "universal" declarations.

    PubMed

    Harmon, S H E

    2008-11-01

    Genomic research is an expanding and subversive field, leaking into various others, from environmental protection to food production to healthcare delivery, and in doing so, it is reshaping our relationship with them. The international community has issued various declaratory instruments aimed at the human genome and genomic research. These soft law instruments stress the special nature of genomics and our genetic heritage, and attempt to set limits on our activities with respect to same, as informed by the human rights paradigm. This paper examines the primary thrust and, more importantly, the joint value position of the Universal Declaration on the Human Genome and Human Rights and the Universal Declaration on Bioethics and Human Rights, concluding that, though important legal instruments from the human rights paradigm, these instruments, or rather the values contained therein, must find a more influential hard law voice and a broader policy environment.

  14. [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.

  15. 28th Annual JPMorgan Healthcare Conference--Human Genome Sciences and Celgene.

    PubMed

    Gale, Sophie; Croasdell, Gary

    2010-03-01

    The JPMorgan Healthcare Conference, held in San Francisco, included presentations by various pharmaceutical companies summarizing their achievements in 2009 and expectations for 2010. This conference report highlights presentations from Human Genome Sciences Inc and Celgene Corp. Investigational drugs from Human Genome Sciences, including belimumab (in collaboration with GlaxoSmithKline plc), albinterferon alfa-2b (with Novartis AG), mapatumumab (with Takeda Pharmaceutical Co Ltd) and HGS-1029, and from Celgene, including romidepsin, pomalidomide, apremilast and PDA-001 (Celgene Cellular Therapeutics), are discussed.

  16. 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

  17. 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.

  18. 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.

  19. Manipulating Memories: The Ethics of Yesterday's Science Fiction and Today's Reality.

    PubMed

    Robillard, Julie M; Illes, Judy

    2016-12-01

    The paper addresses recent advances in memory manipulation from the perspective of the four key pillars of neuroethics: the self, social policy, neurotechnology, and education and outreach. We provide examples for each pillar, assess their neuroethical implications, and conclude with a call for an ethics framework that is specifically tailored for the ethical challenges of memory manipulation.

  20. 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.

  1. 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

  2. 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

  3. 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…

  4. 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.

  5. Science and ethics of human immunodeficiency virus/acquired immunodeficiency syndrome controversies in Africa.

    PubMed

    Brewster, David

    2011-09-01

    The human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) epidemic in Africa has raised important ethical issues for both researchers and clinicians. The most notorious controversy has been related to the zidovudine (AZT) trials in Africa in the late 1990s, in which the control groups were given a placebo rather than an effective drug to prevent vertical transmission. This raised concerns in the sponsoring country about exploitation of subjects, injustice and an ethical double standard between donor countries and resource-poor settings. However, the real double standard is between clinical practice standards in Western versus African countries, which must be addressed as part of the increasing global inequity of wealth both between countries and also within countries. There are important limitations to ethical declarations, principles and guidelines on their own without contextual ethical reasoning. The focus on research ethics with the HIV epidemic has led to a relative neglect of ethical issues in clinical practice. Although the scientific advances in HIV/AIDS have changed the ethical issues since the 1990s, there has also been progress in the bioethics of HIV/AIDS in terms of ethical review capability by local committees as well as in exposure to ethical issues by clinicians and researchers in Africa. However, serious concerns remain about the overregulation of research by bureaucratic agencies which could discourage African research on specifically African health issues. There is also a need for African academic institutions and researchers to progressively improve their research capacity with the assistance of research funders and donor agencies.

  6. 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

  7. 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

  8. 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…

  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. 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…

  11. 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…

  12. Bringing the fathead minnow into the genomic era | Science ...

    EPA Pesticide Factsheets

    The fathead minnow is a well-established ecotoxicological model organism that has been widely used for regulatory ecotoxicity testing and research for over a half century. While a large amount of molecular information has been gathered on the fathead minnow over the years, the lack of genomic sequence data has limited the utility of the fathead minnow for certain applications. To address this limitation, high-throughput Illumina sequencing technology was employed to sequence the fathead minnow genome. Approximately 100X coverage was achieved by sequencing several libraries of paired-end reads with differing genome insert sizes. Two draft genome assemblies were generated using the SOAPdenovo and String Graph Assembler (SGA) methods, respectively. When these were compared, the SOAPdenovo assembly had a higher scaffold N50 value of 60.4 kbp versus 15.4 kbp, and it also performed better in a Core Eukaryotic Genes Mapping Analysis (CEGMA), mapping 91% versus 67% of genes. As such, this assembly was selected for further development and annotation. The foundation for genome annotation was generated using AUGUSTUS, an ab initio method for gene prediction. A total of 43,345 potential coding sequences were predicted on the genome assembly. These predicted sequences were translated to peptides and queried in a BLAST search against all vertebrates, with 28,290 of these sequences corresponding to zebrafish peptides and 5,242 producing no significant alignments. Additional ty

  13. 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

  14. Implementation science, genomic precision medicine, and improved health: A new path forward?

    PubMed

    Williams, Janet K; Feero, W Gregory; Leonard, Debra G B; Coleman, Bernice

    Implementation of genomic discoveries into health care optimally includes evaluation of outcomes for recipients of care, providers, payers, and health care systems. However, the influence of specific aspects of the implementation process on observed outcomes may be missed if assessment of implementation success is not built into the implementation design. The intersection of implementation science with genomics may provide new insights on how to maximize the benefits of emerging genomic technologies in health care. In this summary, members of the Roundtable on Genomics and Precision Health, formerly the Roundtable on Translating Genomic-Based Research for Health, of the National Academies of Sciences, Engineering, and Medicine and the American Academy of Nursing explore challenges and opportunities for nurses to participate in implementing genomic discoveries into their practice informed by the principles of implementation science. Implementation requires collaboration across disciplines. Nurses can take leadership roles in engaging key stakeholders in health care organizations, assuring that communications regarding implementation are consistent with genomic literacy for each group of stakeholders, and planning for evaluation of data to assess how each component of the implementation process affected the overall outcome for health care.

  15. `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.

  16. 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.

  17. 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

  18. 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…

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

    PubMed Central

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

    2009-01-01

    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. PMID:19838311

  20. 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.

  1. 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

  2. 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

  3. 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.

  4. 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.

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

    PubMed Central

    Durant, Anne Foss; 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

  6. 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

  7. 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…

  8. 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.

  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. The Need for Social Ethics in Interdisciplinary Environmental Science Graduate Programs: Results from a Nation-Wide Survey in the United States.

    PubMed

    Hall, Troy E; Engebretson, Jesse; O'Rourke, Michael; Piso, Zach; Whyte, Kyle; Valles, Sean

    2017-04-01

    Professionals in environmental fields engage with complex problems that involve stakeholders with different values, different forms of knowledge, and contentious decisions. There is increasing recognition of the need to train graduate students in interdisciplinary environmental science programs (IESPs) in these issues, which we refer to as "social ethics." A literature review revealed topics and skills that should be included in such training, as well as potential challenges and barriers. From this review, we developed an online survey, which we administered to faculty from 81 United States colleges and universities offering IESPs (480 surveys were completed). Respondents overwhelmingly agreed that IESPs should address values in applying science to policy and management decisions. They also agreed that programs should engage students with issues related to norms of scientific practice. Agreement was slightly less strong that IESPs should train students in skills related to managing value conflicts among different stakeholders. The primary challenges to incorporating social ethics into the curriculum were related to the lack of materials and expertise for delivery, though challenges such as ethics being marginalized in relation to environmental science content were also prominent. Challenges related to students' interest in ethics were considered less problematic. Respondents believed that social ethics are most effectively delivered when incorporated into existing courses, and they preferred case studies or problem-based learning for delivery. Student competence is generally not assessed, and respondents recognized a need for both curricular materials and assessment tools.

  11. Controlling new knowledge: Genomic science, governance and the politics of bioinformatics.

    PubMed

    Salter, Brian; Salter, Charlotte

    2017-04-01

    The rise of bioinformatics is a direct response to the political difficulties faced by genomics in its quest to be a new biomedical innovation, and the value of bioinformatics lies in its role as the bridge between the promise of genomics and its realization in the form of health benefits. Western scientific elites are able to use their close relationship with the state to control and facilitate the emergence of new domains compatible with the existing distribution of epistemic power - all within the embrace of public trust. The incorporation of bioinformatics as the saviour of genomics had to be integrated with the operation of two key aspects of governance in this field: the definition and ownership of the new knowledge. This was achieved mainly by the development of common standards and by the promotion of the values of communality, open access and the public ownership of data to legitimize and maintain the governance power of publicly funded genomic science. Opposition from industry advocating the private ownership of knowledge has been largely neutered through the institutions supporting the science-state concordat. However, in order for translation into health benefits to occur and public trust to be assured, genomic and clinical data have to be integrated and knowledge ownership agreed upon across the separate and distinct governance territories of scientist, clinical medicine and society. Tensions abound as science seeks ways of maintaining its control of knowledge production through the negotiation of new forms of governance with the institutions and values of clinicians and patients.

  12. 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)

  13. 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…

  14. 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…

  15. 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…

  16. 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.

  17. 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

  18. 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)

  19. Integrating anticipated nutrigenomics bioscience applications with ethical aspects.

    PubMed

    Lévesque, Lise; Ozdemir, Vural; Gremmen, Bart; Godard, Béatrice

    2008-03-01

    Nutrigenomics is a subspecialty of nutrition science which aims to understand how gene-diet interactions influence individuals' response to food, disease susceptibility, and population health. Yet ethical enquiry into this field is being outpaced by nutrigenomics bioscience. The ethical issues surrounding nutrigenomics face the challenges of a rapidly evolving field which bring forward the additional dimension of crossdisciplinary integrative research between social and biomedical sciences. This article outlines the emerging nutrigenomics definitions and concepts and analyzes the existing ethics literature concerning personalized nutrition and presents "points to consider" over ethical issues regarding future nutrigenomics applications. The interest in nutrigenomics coincides with a shift in emphasis in medicine and biosciences toward prevention of future disease susceptibilities rather than treatment of already established disease. Hence, unique ethical issues emerge concerning the extent to which nutrigenomics can alter our relation to food, boundaries between health and disease, and the folklore of medical practice. Nutrigenomics can result in new social values, norms, and responsibilities for both individuals and societies. Nutrigenomics is not only another new application of "-omics" technologies in the context of gene-diet interactions. Nutrigenomics may fundamentally change the way we perceive human illness while shifting the focus and broadening the scope of health interventions from patients to healthy individuals. In resource- and time-limited healthcare settings, this creates unique ethical dilemmas and distributive justice issues. Ethical aspects of nutrigenomics applications should be addressed proactively, as this new science develops and increasingly coalesces with other applications of genomics in medicine and public health.

  20. 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.

  1. Developing Ethics Competencies among Science Students at the University of Copenhagen

    ERIC Educational Resources Information Center

    Borsen, T.

    2008-01-01

    Many philosophers and sociologists of science have tried to understand the profound changes that have occurred in science, engineering and technology. In the first part of this paper, I present the work of one such scholar: Jerome Ravetz who, in collaboration with Silvio Funtowicz, has characterised what he calls "postnormal science".…

  2. Stem cells, embryos, and the environment: a context for both science and ethics.

    PubMed

    Towns, C R; Jones, D G

    2004-08-01

    Debate on the potential and uses of human stem cells tends to be conducted by two constituencies-ethicists and scientists. On many occasions there is little communication between the two, with the result that ethical debate is not informed as well as it might be by scientific insights. The aim of this paper is to highlight those scientific insights that may be of relevance for ethical debate. Environmental factors play a significant role in identifying stem cells and their various subtypes. Research related to the role of the microenvironment has led to emphasis upon "plasticity", which denotes the ability of one type of stem cell to undergo a transition to cells from other lineages. This could increase the value given to adult stem cells, in comparison with embryonic stem cell research. Any such conclusion should be treated with caution, however, since optimism of this order is not borne out by current research. The role of the environment is also important in distinguishing between the terms totipotency and pluripotency. We argue that blastocysts (early embryos) and embryonic stem cells are only totipotent if they can develop within an appropriate environment. In the absence of this, they are merely pluripotent. Hence, blastocysts in the laboratory are potentially totipotent, in contrast to their counterparts within the human body which are actually totipotent. This may have implications for ethical debate, suggesting as it does that arguments based on potential for life may be of limited relevance.

  3. Ideological toxicology: invalid logic, science, ethics about low-dose pollution.

    PubMed

    Shrader-Frechette, K

    2008-08-01

    As illustrated by the case of ethanol, claim H is that, for some biological endpoints, low-dose toxins and carcinogens exhibit hormesis, a beneficial or adaprive response characterized by biphasic dose responses and resulting from compensatory biological processes following an initial disruption in homeostasis. From this uncontroversial claim H, however, the paper argues that some toxicologists invalidly infer HG (that H is generalizable across biological model, endpoint measured, and chemical class) and HD (that a strong case can be made for the use of hormesis H as a default assumption in the risk-assessment/regulation process), Evaluating HG and HD, this paper argues for 5 claims. While (1) H is true, (2) HG falls victim to several logical fallacies and therefore is logically, scientifically, and ethically invalid. (3) Because it relies on logical fallacies, confuses necessary and sufficient conditions, and violates at least 5 sets of ethical norms, HD is logically, scientifically, and ethically invalid. (4) Five remedies could help address HG-HD flaws and failure to adequately assess low-dose exposures. (5) Three objections to these criticisms of HG and HD are easily answered.

  4. 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

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

    PubMed

    Dove, Edward S; Özdemir, Vural

    2015-09-01

    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.

  6. 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…

  7. 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)

  8. 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…

  9. 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.

  10. 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.

  11. 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

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

    PubMed Central

    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 (1024). 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. PMID:24904347

  13. 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…

  14. 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.

  15. 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

  16. [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.

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

    PubMed

    Shepard, Roger N

    2008-01-02

    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.

  18. Life Sciences Division and Center for Human Genome Studies Annual report 1989

    SciTech Connect

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

    1990-05-01

    This report summarizes the research and development activities of Los Alamos National Laboratory's Life Sciences Division and biological aspects of the Center for Human Genome Studies for the calendar year 1989. Future editions will include all human genome research projects. The technical portion of the report is divided into two parts: selected research highlights, and project descriptions and accomplishments. Research highlights provide a more detailed description of a select set of projects. A technical description of all projects is presented in sufficient detail to permit the informed reader to assess their scope and significance. 2 figs.

  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. Genome sequences published outside of Standards in Genomic Sciences, October - November 2012

    PubMed Central

    Nelson, Oranmiyan W.; Garrity, George M.

    2012-01-01

    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 subsequent versions of this list are invited to provide the bibliographic data for such references to the SIGS editorial office.

  1. Genome sequences published outside of Standards in Genomic Sciences, July - October 2012

    PubMed Central

    Nelson, Oranmiyan W.; Garrity, George M.

    2012-01-01

    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 subsequent versions of this list are invited to provide the bibliographic data for such references to the SIGS editorial office.

  2. Genome sequences published outside of Standards in Genomic Sciences, May-June 2012

    PubMed Central

    Nelson, Oranmiyan W.; Garrity, George M.

    2012-01-01

    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 subsequent versions of this list are invited to provide the bibliographic data for such references to the SIGS editorial office.

  3. 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.

  4. 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…

  5. 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…

  6. 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.

  7. UNESCO's activities in ethics.

    PubMed

    ten Have, Henk A M J

    2010-03-01

    UNESCO is an intergovernmental organization with 193 Member States. It is concerned with a broad range of issues regarding education, science and culture. It is the only UN organisation with a mandate in science. Since 1993 it is addressing ethics of science and technology, with special emphasis on bioethics. One major objective of the ethics programme is the development of international normative standards. This is particularly important since many Member States only have a limited infrastructure in bioethics, lacking expertise, educational programs, bioethics committees and legal frameworks. UNESCO has recently adopted the Universal Declaration on Bioethics and Human Rights. The focus of current activities is now on implementation of this Declaration. Three activities are discussed that aim at improving and reinforcing the ethics infrastructure in relation to science and technology: the Global Ethics Observatory, the Ethics Education Programme and the Assisting Bioethics Committees project.

  8. 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…

  9. 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.

  10. Compassionate use: a story of ethics and science in the development of a new drug.

    PubMed

    Buhles, William C

    2011-01-01

    This history chronicles the unusual development of the antiviral drug ganciclovir. The first compound with activity against human cytomegalovirus (CMV), ganciclovir was so clearly efficacious that a placebo-controlled clinical trial could not ethically be done, and the FDA rejected the first application to market the drug. Used to treat a blinding eye infection in patients with AIDS, the story of ganciclovir paralleled the spread of the AIDS epidemic. Both ganciclovir and AIDS caught the federal government off guard. Caught in a Catch-22 situation, the pharmaceutical company developing ganciclovir gave the drug away free for five years under compassionate use guidelines. The problems encountered in the development of ganciclovir provide guidance on how future drugs to treat life-threatening diseases can be developed.

  11. Luxury primary care, academic medical centers, and the erosion of science and professional ethics.

    PubMed

    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.

  12. An ethical issue in biodiversity science: The monitoring of penguins with flipper bands.

    PubMed

    Le Maho, Yvon; Saraux, Claire; Durant, Joël M; Viblanc, Vincent A; Gauthier-Clerc, Michel; Yoccoz, Nigel G; Stenseth, Nils C; Le Bohec, Céline

    2011-05-01

    Individual marking is essential to study the life-history traits of animals and to track them in all kinds of ecological, behavioural or physiological studies. Unlike other birds, penguins cannot be banded on their legs due to their leg joint anatomy and a band is instead fixed around a flipper. However, there is now detailed evidence that flipper-banding has a detrimental impact on individuals. It can severely injure flipper tissues, and the drag effect of their flipper bands results in a higher energy expenditure when birds are moving through the water. It also results in lower efficiency in foraging, since they require longer foraging trips, as well as in lower survival and lower breeding success. Moreover, due to the uncertainty of the rate of band loss, flipper bands induce a scientific bias. These problems, which obviously have serious ethical implications, can be avoided with alternative methods such as radiofrequency identification techniques.

  13. 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

  14. Belimumab Human Genome Sciences/Cambridge Antibody Technology/GlaxoSmithKline.

    PubMed

    Ding, Changhai; Jones, Graeme

    2006-05-01

    Belimumab, the lead in a series of human monoclonal antibodies against the human protein B-lymphocyte stimulator (BLyS), is under development by Human Genome Sciences, Cambridge Antibody Technology and GlaxoSmithKline for the potential treatment of autoimmune diseases, including systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). By January 2006, belimumab had completed phase II clinical trials in SLE and RA; a phase III clinical SLE trial is scheduled to begin later this year.

  15. 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

  16. Fruits of human genome project and private venture, and their impact on life science.

    PubMed

    Ikekawa, A; Ikekawa, S

    2001-12-01

    A small knowledge base was created by organizing the Human Genome Project (HGP) and its related issues in "Science" magazines between 1996 and 2000. This base revealed the stunning achievement of HGP and a private venture and its impact on today's biology and life science. In the mid-1990, they encouraged the development of advanced high throughput automated DNA sequencers and the technologies that can analyse all genes at once in a systematic fashion. Using these technologies, they completed the genome sequence of human and various other organisms. These fruits opened the door to comparative genomics, functional genomics, the interdisprinary field between computer and biology, and proteomics. They have caused a shift in biological investigation from studying single genes or proteins to studying all genes or proteins at once, and causing revolutional changes in traditional biology, drug discovery and therapy. They have expanded the range of potential drug targets and have facilitated a shift in drug discovery programs toward rational target-based strategies. They have spawned pharmacogenomics that could give rise to a new generation of highly effective drugs that treat causes, not just symptoms. They should also cause a migration from the traditional medications that are safe and effective for every members of the population to personalized medicine and personalized therapy.

  17. Ethics: A Selected Bibliography.

    DTIC Science & Technology

    1985-03-01

    Light of American Law. Bloomington: Indiana University Press, 1955. (JF423 C3) 53. Callahan, Daniel , and Bok, Sissela, eds. Ethics Teaching in Higher...Educa- tion. New York: Plenum Press, 1980. (BJ66 E84) 54. Callahan, Daniel , and Engelhardt, H. Tristram, eds. The Roots of Ethics: . Science, Religion...Missouri Press, 1966. (JX1416 C18) -" 56. Caplan, Arthur L., and Callahan, Daniel , eds. Ethics in Hard Times. New York: Plenum Press, 1981. (JA79 E825

  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. Everyday Ethics in Research: Translating Authorship Guidelines into Practice in the Bench Sciences

    ERIC Educational Resources Information Center

    Louis, Karen Seashore; Holdsworth, Janet M.; Anderson, Melissa S.; Campbell, Eric G.

    2008-01-01

    Peer-reviewed papers are the major currency in the realm of science. Without an appropriate number of publications in high-quality journals, scientists do not get university positions, are not promoted, and fail to get grants to fund their research. Decisions made about authorship are not always straightforward, as accepted practice sometimes…

  20. 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...

  1. 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.

  2. 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

  3. Ethics and fraud in science: a review of scientific misconduct and applications to craniofacial research.

    PubMed

    Eliades, Theodore; Athanasiou, Athanasios E; Papadopulos, Jannis S

    2005-01-01

    The purpose of this article is to review and discuss the occurrence of fraud in biomedical research and analyze the definition, origin, and various forms of scientific misconduct. Fraud in research most often involves reporting data for which no records of experiment or population are present; manipulating research materials, equipment, or procedures to arrive at the desirable result; adding, changing, or omitting results, which positively or negatively relate to the hypothesis that the research intends to test; and incorporating ideas, statements, procedures of others' work without permission and appropriate credit to the source. The etiologic factors contributing to this deviant behavior, and measures taken by relevant bodies to eliminate this phenomenon are discussed. Ethical and integrity aspects of craniofacial research are explored and a set of criteria to facilitate rigorous assessment of the integrity of clinical and basic research protocols is proposed. These include (1) an integrity-focused training of researchers to adhere to specific laboratory procedure and tactics which discourage fraud; (2) appointment of external reviewers to detect unusual and suspicious experimental process or data patterns; and (3) encouragement of multicenter trials. Although it is widely recognized that the sole determinant of scientific misconduct is the individual investigator's integrity, a number of precautions may effectively reduce the prevalence of this event, which may affect the status and trends of biomedical research in general.

  4. 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.

  5. 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

  6. 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.

  7. 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.

  8. 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

  9. What is data ethics?

    PubMed

    Floridi, Luciano; Taddeo, Mariarosaria

    2016-12-28

    This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data ethics builds on the foundation provided by computer and information ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations-the interactions among hardware, software and data-rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments.This article is part of the themed issue 'The ethical impact of data science'.

  10. 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…

  11. 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…

  12. 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

  13. 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.

  14. 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.

  15. 'Mind genomics': the experimental, inductive science of the ordinary, and its application to aspects of food and feeding.

    PubMed

    Moskowitz, Howard R

    2012-11-05

    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. 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

  17. 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.

  18. 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

  19. 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…

  20. Medical Ethics Training: A Clinical Partnership.

    ERIC Educational Resources Information Center

    Thomasma, David C.

    1979-01-01

    The ethics training program at the University of Tennessee Center for the Health Sciences involves a four-way dialogue among clinical faculty and house staff, ethics faculty and fellows, the medical students, and philosophy ethics students. The program's clinical basis allows participants to become sophisticated about ethical issues in practice.…

  1. Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization--the case of genetic testing for autism.

    PubMed

    Jordan, Bertrand R; Tsai, Daniel Fu Chang

    2010-07-01

    This paper examines some ethical issues arising from whole-genome association studies for multigenic diseases, focusing on the case of autism. Events occurring following the announcement of a genetic test for autism in France (2005-2009) are described to exemplify the ethical controversies that can arise when genetic testing for autism is applied prematurely and inappropriately promoted by biotech companies. The authors argue that genetic tests assessing one or a few genes involved in highly multigenic disorders can only be useful if: (1) the genetic linkage found in the scientific study must be statistically convincing, reproducible and also applicable to the population to which the individual considered belongs (scientific validity); (2) the relative risk conferred by the 'high-risk' allele should be high enough to be significant to the patient (significant impact); (3) use of the test should lead to some improvement of outcome for the patient, resulting from adapted treatment if available, or at least from adjustment of lifestyle (or life goals) prompted by the new knowledge generated (clinical utility). Decisions concerning genetic testing for autism involve scientific judgement, value judgement and good knowledge of a constantly evolving therapeutic environment. The implementation of genetic tests for highly multigenic diseases thus requires strong mechanisms to ensure that they are used in a fashion that can benefit patients, and these mechanisms must be able to cope with rapid progress in scientific knowledge and therapeutic intervention.

  2. [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.

  3. Lessons from Fraxinus, a crowd-sourced citizen science game in genomics.

    PubMed

    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; MacLean, Dan

    2015-07-29

    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.

  4. What is data ethics?

    PubMed Central

    2016-01-01

    This theme issue has the founding ambition of landscaping data ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing and use), algorithms (including artificial intelligence, artificial agents, machine learning and robots) and corresponding practices (including responsible innovation, programming, hacking and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data ethics builds on the foundation provided by computer and information ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the level of abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations—the interactions among hardware, software and data—rather than on the variety of digital technologies that enable them. And it emphasizes the complexity of the ethical challenges posed by data science. Because of such complexity, data ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of data science and its applications within a consistent, holistic and inclusive framework. Only as a macroethics will data ethics provide solutions that can maximize the value of data science for our societies, for all of us and for our environments. This article is part of the themed issue ‘The ethical impact of data science’. PMID:28336805

  5. 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.

  6. 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.

  7. 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

  8. 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.

  9. 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...

  10. [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.

  11. Nursing Advocacy in a Post-Genomic Age

    PubMed Central

    Hamilton, Rebekah

    2009-01-01

    Synopsis The Human Genome Project will change how health is defined and how disease is prevented, diagnosed and treated. As the largest group of health care providers in contact with patients nurses need to be competent in the science of genetics. Beyond this nurses need to understand the complexities that arise in genomic health care. Ethical, legal and social issues are integral to the delivery of genomic health care and nurses must have an astute understanding of such complexities. What it means to know, to reason and to act in this post-genomic age is explored. PMID:19850180

  12. Genomics, "Discovery Science," Systems Biology, and Causal Explanation: What Really Works?

    PubMed

    Davidson, Eric H

    2015-01-01

    Diverse and non-coherent sets of epistemological principles currently inform research in the general area of functional genomics. Here, from the personal point of view of a scientist with over half a century of immersion in hypothesis driven scientific discovery, I compare and deconstruct the ideological bases of prominent recent alternatives, such as "discovery science," some productions of the ENCODE project, and aspects of large data set systems biology. The outputs of these types of scientific enterprise qualitatively reflect their radical definitions of scientific knowledge, and of its logical requirements. Their properties emerge in high relief when contrasted (as an example) to a recent, system-wide, predictive analysis of a developmental regulatory apparatus that was instead based directly on hypothesis-driven experimental tests of mechanism.

  13. Bridging theory and practice: Mixed methods approach to instruction of law and ethics within the pharmaceutical sciences.

    PubMed

    Wilby, Kyle John; Nasr, Ziad Ghantous

    2016-11-01

    Background: Professional responsibilities are guided by laws and ethics that must be introduced and mastered within pharmaceutical sciences training. Instructional design to teaching typically introduces concepts in a traditional didactic approach and requires student memorization prior to application within practice settings. Additionally, many centers rely on best practices from abroad, due to lack of locally published laws and guidance documents. Objectives: The aim of this paper was to summarize and critically evaluate a professional skills laboratory designed to enhance learning through diversity in instructional methods relating to pharmacy law and best practices regarding narcotics, controlled medications, and benzodiazepines. Setting: This study took place within the Professional Skills Laboratory at the College of Pharmacy at Qatar University. Method: A total of 25 students participated in a redesigned laboratory session administered by a faculty member, clinical lecturer, teaching assistant, and a professional skills laboratory technician. The laboratory consisted of eight independent stations that students rotated during the 3-h session. Stations were highly interactive in nature and were designed using non-traditional approaches such as charades, role-plays, and reflective drawings. All stations attempted to have students relate learned concepts to practice within Qatar. Main outcome measures: Student perceptions of the laboratory were measured on a post-questionnaire and were summarized descriptively. Using reflection and consensus techniques, two faculty members completed a SWOC (Strengths, Weaknesses, Opportunities, and Challenges) analysis in preparation for future cycles. Results: 100% (25/25) of students somewhat or strongly agreed that their knowledge regarding laws and best practices increased and that their learning experience was enhanced by a mixed-methods approach. A total of 96% (24/25) of students stated that the mixed

  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. 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.

  16. [Ethical dilemmas in health].

    PubMed

    Boléo-Tomé, J

    2009-01-01

    It is difficult to speak of ethic dilemmas in a society that has relativism as the oficial philosophical and political doctrine, i.e., stable values and behavior references, are denied, both in health care and in any other area of human knowledge. In the field of medical sciences it is even pretended to pass from the observational methodology to a field of manipulation and manipulability. It is the very Ethic that is presented as a dilemma. In these conditions one needs to know the lines of thought that are defended, to replace and make disappear the stable ethic references: ecletism, historicism, scientificism, pragmatism, and nihilism itself, that lead to the 'new ethic paradigm', that has created by itself a pseudo-spirituality. The truth is we are adrift in the 'Ethic of Convenience' which changes according to the majorities. In this setting the way to go is to rediscover the abandoned ethic values: only with an objective ethic, with sound references and foundations, it is possible to re-establish and perfect the patient-physician relationship, for a better social health. And this begins with the ethic problem of human life.

  17. 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

  18. 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.

  19. Cultural diversity in nanotechnology ethics.

    PubMed

    Schummer, Joachim

    2011-01-01

    Along with the rapid worldwide advance of nanotechnology, debates on associated ethical issues have spread from local to international levels. However unlike science and engineering issues, international perceptions of ethical issues are very diverse. This paper provides an analysis of how sociocultural factors such as language, cultural heritage, economics and politics can affect how people perceive ethical issues of nanotechnology. By attempting to clarify the significance of sociocultural issues in ethical considerations my aim is to support the ongoing international dialogue on nanotechnology. At the same time I pose the general question of ethical relativism in engineering ethics, that is to say whether or not different ethical views are irreconcilable on a fundamental level.

  20. The Art and Science of Thyroid Surgery in the Age of Genomics: 100 years after Theodor Kocher

    PubMed Central

    Gulec, Seza

    2017-01-01

    Cancer is a disorder of the genome. The thyroid cancer genome is being decoded. Recent studies have identified a mutation or a genetic alteration in 95% of thyroid cancers. The National Cancer Institute initiated the Cancer Genome Atlas project in 2006 to catalogue genetic mutations associated with cancer, using genome sequencing and bioinformatics. The project has expanded to carry out genomic characterization and sequence analysis of thyroid cancer. The concept of risk stratification based on traditional parameters will soon vacate their role for clear molecular markers of non-invasive/focal, invasive/metastatic and systemic stages/phases of neoplastic disorder. A refined classification scheme based on genomics and its phenotypic expressions will accurately reflect the biologic differences between the different morphologic definitions we use today. Tumor differentiation/de-differentiation, and clinical behavior of an individual cancer will be defined by molecular markers, in addition to standard morpho-pathology. Empiricism in science of medicine and surgery has acquired a new method for testing the appropriate treatment for individual patients; that is molecular pathology, governed by genomics. The technology is present and rapidly evolving. The surgeons will determine the extent of interventions with molecular evidence and guidance. PMID:28117284

  1. 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…

  2. 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

  3. 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.

  4. 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

  5. Toward a Taxonomy for Multi-Omics Science? Terminology Development for Whole Genome Study Approaches by Omics Technology and Hierarchy.

    PubMed

    Pirih, Nina; Kunej, Tanja

    2017-01-01

    Omics is a form of high-throughput systems science. However, taxonomies for omics studies are limited, inviting us to rethink new ways in which we classify, prioritize, and rank various omics systems science studies. In this overarching context, the genome-wide study approaches have proliferated in number and popularity over the past decade. However, their hierarchy is not well organized and the development of attendant terminology is not controlled. In the present study, we searched the literature in PubMed and the Web of Science databases published from March 1999 to September 2016 using the keywords, including genome-wide, association, whole genome, transcriptome-wide, metabolome, epigenome, and phenome. We identified the whole genome study approaches and sorted them according to the omics technology types (genomics, proteomics, and so on) and hierarchy. Thirty-four studies from over 90 publications were sorted into 10 omics groups: DNA level, transcriptomics, proteomics, interactomics, metabolomics, epigenomics, miRNomics/ncRNomics, phenomics, environmental omics, and pharmacogenomics. We suggest here modifications of terminology for study approaches, which share the same acronyms such as EWAS for epigenome-wide association and environment-wide association studies, and MWAS for methylome-wide association and metabolome-wide association studies. Taken together, our study presented here provides the first systematic review and analyses of whole genome approaches and presents a baseline for further controlled terminology development, with a view to a new taxonomy for omics and multi-omics studies in the future. Finally, we call for greater dialogue and collaboration across diverse omics knowledge domains and applications, for example, across plants, animals, clinical medicine, and ecology.

  6. 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

  7. All the World's a Stage: Facilitating Discovery Science and Improved Cancer Care through the Global Alliance for Genomics and Health.

    PubMed

    Lawler, Mark; Siu, Lillian L; Rehm, Heidi L; Chanock, Stephen J; Alterovitz, Gil; Burn, John; Calvo, Fabien; Lacombe, Denis; Teh, Bin Tean; North, Kathryn N; Sawyers, Charles L

    2015-11-01

    The recent explosion of genetic and clinical data generated from tumor genome analysis presents an unparalleled opportunity to enhance our understanding of cancer, but this opportunity is compromised by the reluctance of many in the scientific community to share datasets and the lack of interoperability between different data platforms. The Global Alliance for Genomics and Health is addressing these barriers and challenges through a cooperative framework that encourages "team science" and responsible data sharing, complemented by the development of a series of application program interfaces that link different data platforms, thus breaking down traditional silos and liberating the data to enable new discoveries and ultimately benefit patients.

  8. Ethical Research and Pedagogical Gaps

    ERIC Educational Resources Information Center

    Schneider, Barbara

    2006-01-01

    "Guidelines for the Ethical Treatment of Students and Student Writing in Composition Studies" signals our increased awareness of the ethical obligations that attend our scholarship and research. Our adoption of research methods from other fields, particularly the social sciences, has heightened that concern. We must now consider the ethical…

  9. 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…

  10. 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

  11. The old faith and the new science: the Nuremberg Code and human experimentation ethics in Britain, 1946-73.

    PubMed

    Hazelgrove, Jenny

    2002-04-01

    This article explores the impact of the Nuremberg Code on post-Second World War research ethics in Britain. Against the background of the Nuremberg Medical Trial, the Code received international endorsement, but how much did its ethical percepts influence actual research? This paper shows that, despite British involvement in the formulation of the Code, the experience of war-time and changing career structures were more influential in shaping the approach of investigators to their subjects. Where medical debates ensued, primarily over controversial research practices at the British Postgraduate Medical School, Hammersmith Hospital, they were set in the context of a much older division between 'bedside' and 'scientific' medicine. But whatever differences there may have been between those physicians who advocated research and those who questioned its use and ethical basis, most clung to the paternalist assumption that it was the doctor's place to decide what was best for his patients. Faced with rising public and medical criticism of contemporary research practices, the medical élite of the 1960s and 1970s safeguarded the reputation of the profession and medical control of research by negotiating new voluntary codes. In a similar move, their predecessors had helped to negotiate the Nuremberg Code in anticipation of public criticism of experimentation arising from the Nuremberg Medical Trial.

  12. The Path to Clinical Proteomics Research: Integration of Proteomics, Genomics, Clinical Laboratory and Regulatory Science

    PubMed Central

    Boja, Emily S.

    2011-01-01

    Better biomarkers are urgently needed to cancer detection, diagnosis, and prognosis. While the genomics community is making significant advances in understanding the molecular basis of disease, proteomics will delineate the functional units of a cell, proteins and their intricate interaction network and signaling pathways for the underlying disease. Great progress has been made to characterize thousands of proteins qualitatively and quantitatively in complex biological systems by utilizing multi-dimensional sample fractionation strategies, mass spectrometry and protein microarrays. Comparative/quantitative analysis of high-quality clinical biospecimen (e.g., tissue and biofluids) of human cancer proteome landscape has the potential to reveal protein/peptide biomarkers responsible for this disease by means of their altered levels of expression, post-translational modifications as well as different forms of protein variants. Despite technological advances in proteomics, major hurdles still exist in every step of the biomarker development pipeline. The National Cancer Institute's Clinical Proteomic Technologies for Cancer initiative (NCI-CPTC) has taken a critical step to close the gap between biomarker discovery and qualification by introducing a pre-clinical "verification" stage in the pipeline, partnering with clinical laboratory organizations to develop and implement common standards, and developing regulatory science documents with the US Food and Drug Administration to educate the proteomics community on analytical evaluation requirements for multiplex assays in order to ensure the safety and effectiveness of these tests for their intended use. PMID:21474978

  13. The path to clinical proteomics research: integration of proteomics, genomics, clinical laboratory and regulatory science.

    PubMed

    Boja, Emily S; Rodriguez, Henry

    2011-04-01

    Better biomarkers are urgently needed to cancer detection, diagnosis, and prognosis. While the genomics community is making significant advances in understanding the molecular basis of disease, proteomics will delineate the functional units of a cell, proteins and their intricate interaction network and signaling pathways for the underlying disease. Great progress has been made to characterize thousands of proteins qualitatively and quantitatively in complex biological systems by utilizing multi-dimensional sample fractionation strategies, mass spectrometry and protein microarrays. Comparative/quantitative analysis of high-quality clinical biospecimen (e.g., tissue and biofluids) of human cancer proteome landscape has the potential to reveal protein/peptide biomarkers responsible for this disease by means of their altered levels of expression, post-translational modifications as well as different forms of protein variants. Despite technological advances in proteomics, major hurdles still exist in every step of the biomarker development pipeline. The National Cancer Institute's Clinical Proteomic Technologies for Cancer initiative (NCI-CPTC) has taken a critical step to close the gap between biomarker discovery and qualification by introducing a pre-clinical "verification" stage in the pipeline, partnering with clinical laboratory organizations to develop and implement common standards, and developing regulatory science documents with the US Food and Drug Administration to educate the proteomics community on analytical evaluation requirements for multiplex assays in order to ensure the safety and effectiveness of these tests for their intended use.

  14. BioCreative Workshops for DOE Genome Sciences: Text Mining for Metagenomics

    SciTech Connect

    Wu, Cathy H.; Hirschman, Lynette

    2016-10-29

    The objective of this project was to host BioCreative workshops to define and develop text mining tasks to meet the needs of the Genome Sciences community, focusing on metadata information extraction in metagenomics. Following the successful introduction of metagenomics at the BioCreative IV workshop, members of the metagenomics community and BioCreative communities continued discussion to identify candidate topics for a BioCreative metagenomics track for BioCreative V. Of particular interest was the capture of environmental and isolation source information from text. The outcome was to form a “community of interest” around work on the interactive EXTRACT system, which supported interactive tagging of environmental and species data. This experiment is included in the BioCreative V virtual issue of Database. In addition, there was broad participation by members of the metagenomics community in the panels held at BioCreative V, leading to valuable exchanges between the text mining developers and members of the metagenomics research community. These exchanges are reflected in a number of the overview and perspective pieces also being captured in the BioCreative V virtual issue. Overall, this conversation has exposed the metagenomics researchers to the possibilities of text mining, and educated the text mining developers to the specific needs of the metagenomics community.

  15. 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.

  16. 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)

  17. 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)

  18. [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.

  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. 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

  1. 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…

  2. 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

  3. 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.

  4. Ethics, evolution and culture.

    PubMed

    Mesoudi, Alex; Danielson, Peter

    2008-08-01

    Recent work in the fields of evolutionary ethics and moral psychology appears to be converging on a single empirically- and evolutionary-based science of morality or ethics. To date, however, these fields have failed to provide an adequate conceptualisation of how culture affects the content and distribution of moral norms. This is particularly important for a large class of moral norms relating to rapidly changing technological or social environments, such as norms regarding the acceptability of genetically modified organisms. Here we suggest that a science of morality/ethics can benefit from adopting a cultural evolution or gene-culture coevolution approach, which treats culture as a second, separate evolutionary system that acts in parallel to biological/genetic evolution. This cultural evolution approach brings with it a set of established theoretical concepts (e.g. different cultural transmission mechanisms) and empirical methods (e.g. evolutionary game theory) that can significantly improve our understanding of human morality.

  5. The limits of the Buddhist embrace of science. Commentary on "Compassion, ethics, and neuroscience: neuroethics through Buddhist eyes".

    PubMed

    Cho, Francisca

    2012-09-01

    The readiness of Buddhists to dialogue with and embrace modern science has caused some to worry that this encounter will deform Buddhist traditions for the sake of acceptance by the West. But their strong tradition of epistemological skepticism and intellectual pluralism makes it unlikely that Buddhists will embrace scientific positivism. Given the tensions between religion and science in contemporary western society, it is perhaps this feature of Buddhism that can make the most fruitful contribution in its dialogue with science.

  6. Fund my treatment!: A call for ethics-focused social science research into the use of crowdfunding for medical care.

    PubMed

    Snyder, Jeremy; Mathers, Annalise; Crooks, Valorie A

    2016-11-01

    Crowdfunding involves raising money from large groups of individuals, often through the use of websites dedicated to this purpose. Crowdfunding campaigns aimed at raising money to pay for expenses related to receiving medical treatment are receiving increased media attention and there is evidence that medical crowdfunding websites are heavily used. Nonetheless, virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals' relationships to their health systems. Ethical concerns have been raised in relation to these campaigns, focusing on issues for campaigners and donors such as exposure to fraudulent campaigns, loss of privacy, and fairness in how medical crowdfunding funds are distributed. Medical crowdfunding websites themselves have not been systematically studied, despite their significant influence on how these campaigns are developed and promoted. In this paper, we identify three very broad and pressing ethical questions regarding medical crowdfunding for social scientists to address and offer some preliminary insights into key issues informing future answers to each: Who benefits the most from medical crowdfunding and how does medical crowdfunding affect access to medical care; How does medical crowdfunding affect our understanding of the causes of inadequate access to medical care; and How are campaigner and donor privacy affected by website design? Our observations indicate the need for increased scholarly attention to the ethical and practical effects of medical crowdfunding for campaigners, recipients, donors, and the health system as a whole.

  7. [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.

  8. 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…

  9. 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.

  10. 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

  11. 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.

  12. 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

  13. 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…

  14. 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…

  15. 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…

  16. 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

  17. 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…

  18. 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.…

  19. 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

  20. 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.

  1. Ethics: Can Public Land Management Agencies Learn from the Military

    DTIC Science & Technology

    1990-03-07

    the "conservation ethic." Aldo Leopold , one of the great fathers of the conservation movement in the United States, was also one of the first to...the science of land conservation and utilization. They 32 do need to have a land ethic, the kind espoused by Aldo Leopold . Hiding behind an ethic that...suggest the concept of a land ethic. James E. Coufal, in his article "The Land Ethic Question", describes Leopold’s philosophy: Leopold believed that

  2. Ethics in Trichology

    PubMed Central

    Padmanabhan, Parvathi

    2010-01-01

    Today, trichology as a science is offered by reputed institutes worldwide with a planned curriculum of theory and clinical exposure. Non-medical trichologists, with rare exceptions, continue to lure the public with unscientific methods. A qualified dermatologist equipped with knowledge of hair biology is undoubtedly the most competent to deal with hair problems. We are all indisputably governed by a basic code of medical ethics as we are doctors first and last. Hence, a dermatologist/trichologist cannot have another set of ethics. Having said that, we cannot discount the fact that there are special clinical situations where guidelines already exist or need to be established with compliance to the base code of ethics. PMID:21188023

  3. The Ethics of Science and/as Research: Deconstruction and the Orientations of a New Academic Responsibility

    ERIC Educational Resources Information Center

    Trifonas, Peter

    2003-01-01

    The principle of reason "as principle of grounding, foundation or institution" has tended to guide the science of research toward techno-practical ends. From this epistemic superintendence of the terms of knowledge and inquiry, there has arisen the traditional notion of academic responsibility that is tied to the pursuit of truth via a conception…

  4. 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…

  5. 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…

  6. 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.

  7. 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

  8. Rational accountability and rational autonomy in academic practice: An extended case study of the communicative ethic of interdisciplinary science

    NASA Astrophysics Data System (ADS)

    Robertson, Susan Margaret

    The dissertation investigates the interaction of rational accountability and rational autonomy in interdisciplinary science within the lifeworld of the university. It focuses on the cultural, social and motivational forces that university researchers draw on, and develop, to constitute and regulate interdisciplinary science. Findings are analyzed within an applied critical social theory framework that attends to the interaction of instrumental and communicative rational action within the public spaces that constitute the lifeworld of the university as a public sphere in society. The research raises questions of how academics practice interdisciplinary science and how these practices relate to the reproduction of the regulative ideal of the university as a community that practices public reason. The conceptual framework informing the research is Habermas' (1984) theory of communicative action. Using Burawoy's (1991) extended case study method as an operational strategy, two modes of constituting and regulating interdisciplinary science were found. Instrumental rational modes dominated in social contexts of interdisciplinary science where consensus on the normative goals and purposes of rational academic action were pre-existing and pre-supposed by participants. Communicative rational modes dominated in social contexts of interdisciplinary science where the normative goals and purposes of rational academic action entered a contested domain. Endorsements for interdisciplinary science policies are coinciding with demands for increased accountability and relevance of Canada's university system. At the same time that the university system must respond to external demands, it must reproduce itself as a public institution open to the discursive redemption of factual and normative validity claims. The study found that academics participate in, but also contest the instrumental regulation of academic inquiry and conduct by using their constitutional autonomy and freedom to

  9. 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

  10. 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…

  11. Population Control and Scientific Ethics.

    ERIC Educational Resources Information Center

    Stern, Zev

    1978-01-01

    Garrett Hardin, a trained biologist, made a plea for coercive population control in a prestigious scientific journal (Science, 1968). His theory on how to control population is examined, the net effects of a situational vs an absolute ethics is weighed, and the limits to science and its methodology are evaluated. (Author/RK)

  12. 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.

  13. Internet Ethics.

    ERIC Educational Resources Information Center

    Emmans, Cindy

    2000-01-01

    Focuses on the issue of ethical use of the Internet in schools, and suggests that by devising and implementing acceptable use policies, and providing students with a set of ethical guidelines, schools and libraries can deal with the situation before it becomes a problem. Discusses and the need for parents to be included in policy formation and to…

  14. "Ethics Shock."

    ERIC Educational Resources Information Center

    Knefelkamp, L. Lee

    1990-01-01

    Four books focusing on ethical issues in collegiate sports are reviewed: "Paterno by the Book,""Personal Fouls,""Never Too Young to Die: The Death of Len Bias," and "Rules of the Game: Ethics in College Sport." The themes of academic standards, student responsibility, the coach's role and responsibilities,…

  15. 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.

  16. 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

  17. [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.

  18. Finding people who will tell you their thoughts on genomics-recruitment strategies for social sciences research.

    PubMed

    Middleton, A; Bragin, E; Parker, M

    2014-10-01

    This paper offers a description of how social media, traditional media and direct invitation were used as tools for the recruitment of 6,944 research participants for a social sciences study on genomics. The remit was to gather the views of various stakeholders towards sharing incidental findings from whole genome studies. This involved recruiting members of the public, genetic health professionals, genomic researchers and non-genetic health professionals. A novel survey was designed that contained ten integrated films; this was made available online and open for completion by anyone worldwide. The recruitment methods are described together with the convenience and snowballing sampling framework. The most successful strategy involved the utilisation of social media; Facebook, Blogging, Twitter, LinkedIn and Google Ads led to the ascertainment of over 75 % of the final sample. We conclude that the strategies used were successful in recruiting in eclectic mix of appropriate participants. Design of the survey and results from the study are presented separately.

  19. Personal Ethics versus Professional Ethics

    DTIC Science & Technology

    1996-01-01

    Colorado Springs, Colo.: Navpress, 1978). 2. Quoted in Andrew Stark, “What’s the Matter with Business Ethics?” Harvard Business Review , May–June 1993...39. 3. Ibid., 40. 4. Kenneth R. Andrews, “Ethics in Practice,” Harvard Business Review , September–October 1989, 99. 5. Quoted in Perspective: A

  20. Abortion, ethics, and biology.

    PubMed

    Wind, J

    1978-01-01

    An argument is made for applying the principles of evolutionary biology to abortion behavior, based on the idea that long-lasting behavior (including ethical behavior) has a positive selective value which theoretically can be translated into population numbers. The approach verges on utilitarianism; it is argued that such an approach could reduce or avoid the emotionality and subjectivity of arguments for and against induced abortion. Actual application of evolutionary biology principles is limited by the rudimentary present state of behavioral science.

  1. 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)

  2. 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.

  3. 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.

  4. 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

  5. "Harnessing genomics to improve health in India" – an executive course to support genomics policy

    PubMed Central

    Acharya, Tara; Kumar, Nandini K; Muthuswamy, Vasantha; Daar, Abdallah S; Singer, Peter A

    2004-01-01

    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 into

  6. "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

  7. What's philosophically interesting about engineering ethics?

    PubMed

    Davis, Michael

    2003-07-01

    What makes a subject philosophically interesting is hard-to-resolve confusion about fundamental concepts. Engineering ethics suffers from at least three such fundamental confusions. First, there is confusion about what the "ethics" in engineering ethics is (ordinary morality, philosophical ethics, special standards, or something else?) Second, there is confusion about what the profession of engineering is (a function, discipline, occupation, kind of organization, or something else?) Third, there is confusion about what the discipline of engineering is. These fundamental confusions in engineering ethics connect with philosophically interesting work in moral theory, political philosophy, and philosophy of science. Work in these areas may help with the philosophical problems of engineering ethics. But, equally important, work in engineering ethics may help with the philosophical problems in these others fields.

  8. Moral and Ethical Decision Making: Literature Review

    DTIC Science & Technology

    2005-08-08

    articles et ouvrages . Ces titres proviennent de la recherche dans des domaines comme les sciences du comportement, la théorie des organisations, la...Operations DND Department of National Defence DNDEQ Department of National Defence Ethics Questionnaire EAB Ethics Advisory Board ECS...pilot test of the questionnaire , the Department of National Defence Ethics Questionnaire (DNDEQ). Phase II involved the administration of the

  9. 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

  10. As Ethics is a Core Attribute of Science, So Geoethics Must Be at the Core of Geoscience

    NASA Astrophysics Data System (ADS)

    Cronin, V. S.; Bank, C.; Bobrowsky, P. T.; Geissman, J. W.; Kieffer, S. W.; Mogk, D. W.; Palinkas, C. M.; Pappas Maenz, C.; Peppoloni, S.; Ryan, A. M.

    2015-12-01

    The daily quest of a geoscientist is to seek reliable information about Earth: its history, nature, materials, processes, resources and hazards. In science, reliable information is based on reproducible observations (scientific facts), and includes an estimate of uncertainty. All geoscientists share that basic quest, regardless of whether they wear a lab coat, business suit or field boots at work. All geoscientists also share a responsibility to serve society - the same society that invested in science and education, and thereby enabled the development of geoscience as well as the commercial ventures that utilize geoscience. What does society expect in return for that investment? It just wants the truth, along with a clear indication of the uncertainty. Society needs reliable geoscience information and expertise so that it can make good, informed decisions about resources, risk and our shared environment. Unreliable geoscience information, if represented as valid, might do irreparable harm. The authors represent the International Association for Promoting Geoethics (IAPG, www.geoethics.org), which seeks to develop and advance geoethics worldwide. Geoethics is based on the moral imperative for geoscientists to use our knowledge and expertise about Earth for the benefit of humankind. Informed by the geologic record of the intertwined history of life and our planet, that moral imperative extends beyond our time, our culture, and even our species. Ultimately, Earth is a small lifeboat in space. Geoscientists form the essential interface between our human society and Earth, and we must act for the health and benefit of both. Einstein wrote, "Truth is what stands the test of experience." If geoscientists are unwilling to engage the public and to speak the truth about Earth, who else will assume that role? The challenges we face together - resources, energy, potable water, soil conservation, sea-level rise - are too serious for geoscientists to be mute. Voices motivated

  11. 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.

  12. Ethics in Nanotechnology: Starting from Scratch?

    ERIC Educational Resources Information Center

    Ebbesen, Mette; Andersen, Svend; Besenbacher, Flemming

    2006-01-01

    Research in nanotechnology has advanced rapidly in recent years. Several researchers, however, warn that there is a paucity of research on the ethical, legal, and social implications of nanotechnology, and they caution that ethical reflections on nanotechnology lag behind this fast developing science. In this article, the authors question this…

  13. Ethics Today: Are Our Principles Still Relevant?

    ERIC Educational Resources Information Center

    Garnar, Martin

    2015-01-01

    In 1939 technological advances included the first handheld electric slicing knife, the first mass-produced helicopter, and the first transmission of a picture via a cable system (Science and Technology 2001). That year also saw the first Code of Ethics adopted by the American Library Association (ALA OIF 2010, 311). Can an ethical code first…

  14. Conversing on Ethics, Morality and Education

    ERIC Educational Resources Information Center

    McGavin, P. A.

    2013-01-01

    In philosophical use, "ethics" and "moral philosophy" are more closely synonymous--one deriving from Greek, "ethike" and the other from Latin "moralis." In typical social science paradigms, there generally prevails a consensual sense of contemporary everyday use of "ethics," except where earlier…

  15. Ethics in Distance Education: Developing Ethical Policies.

    ERIC Educational Resources Information Center

    Gearhart, Deb

    2001-01-01

    Examines the changing world of education through distance education and discusses the need for ethics in distance education. Explains how to ethically develop policy for distance education, including Internet ethics, good practices guidelines, and involving faculty. (LRW)

  16. Scientific Ethics in Chemical Education

    NASA Astrophysics Data System (ADS)

    Kovac, Jeffrey

    1996-10-01

    Scientific ethics is a subset of professional ethics, the special rules of conduct adhered to by people engaged in those pursuits called professions. It is distinct from, but consistent with, both ordinary morality and moral theory. The codes of professional ethics derive from the two bargains that define a profession: the internal code of practice and the external bargain between the profession and society. While the informal code of professional conduct is well understood by working scientists, it is rarely explicitly included in the chemistry curriculum. Instead, we have relied on informal methods to teach students scientific ethics, a strategy that is haphazard at best. In this paper I argue that scientific ethics can and must be taught as part of the chemistry curriculum and that this is the best done through the case-study method. Many decisions made by working scientists have both a technical and an ethical component. Students need to learn how to make good decisions in professional ethics. The alternative is, at best, sloppy science and, at worst, scientific misconduct.

  17. Technology and Ethics: Some Lessons in Puerto Rico.

    ERIC Educational Resources Information Center

    Frey, William J.

    1998-01-01

    Describes the efforts to integrate ethics across the curriculum, especially in business, science, and engineering, at the University of Puerto Rico at Mayaguez. Explains why the integration of ethics across the curriculum is better than application when teaching ethics to students. Discusses the use of participatory case studies in engineering…

  18. Confessions of a Shoveler: STS Subcultures and Engineering Ethics

    ERIC Educational Resources Information Center

    Herkert, Joseph R.

    2006-01-01

    Mainstream science, technology, and society scholars have shown little interest in engineering ethics, one going so far as to label engineering ethics activists as "shit shovelers." Detachment from engineering ethics on the part of most STS scholars is related to a broader and long-standing split between the scholar-oriented and activist-oriented…

  19. Homogeneity and heterogeneity as situational properties: producing--and moving beyond?--race in post-genomic science.

    PubMed

    Shim, Janet K; Darling, Katherine Weatherford; Lappe, Martine D; Thomson, L Katherine; Lee, Sandra Soo-Jin; Hiatt, Robert A; Ackerman, Sara L

    2014-08-01

    In this article, we explore current thinking and practices around the logics of difference in gene-environment interaction research in the post-genomic era. We find that scientists conducting gene-environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing populations not as inherently homogeneous or heterogeneous, but rather by actively working to produce homogeneity along some dimensions and heterogeneity along others in their study populations. Thus we argue that homogeneity and heterogeneity are situational properties--properties that scientists seek to achieve in their study populations, the available data, and other aspects of the research situation they are confronting, and then leverage to advance post-genomic science. Pointing to the situatedness of homogeneity and heterogeneity in gene-environment interaction research underscores the work that these properties do and the contingencies that shape decisions about research procedures. Through a focus on the situational production of homogeneity and heterogeneity more broadly, we find that gene-environment interaction research attempts to shift the logic of difference from solely racial terms as explanatory ends unto themselves, to racial and other dimensions of difference that may be important clues to the causes of complex diseases.

  20. Homogeneity and heterogeneity as situational properties: Producing – and moving beyond? – race in post-genomic science

    PubMed Central

    Shim, Janet K; Darling, Katherine Weatherford; Lappe, Martine D; Thomson, L Katherine; Lee, Sandra Soo-Jin; Hiatt, Robert A; Ackerman, Sara L

    2015-01-01

    In this article, we explore current thinking and practices around the logics of difference in gene–environment interaction research in the post-genomic era. We find that scientists conducting gene–environment interaction research continue to invoke well-worn notions of racial difference and diversity, but use them strategically to try to examine other kinds of etiologically significant differences among populations. Scientists do this by seeing populations not as inherently homogeneous or heterogeneous, but rather by actively working to produce homogeneity along some dimensions and heterogeneity along others in their study populations. Thus we argue that homogeneity and heterogeneity are situational properties – properties that scientists seek to achieve in their study populations, the available data, and other aspects of the research situation they are confronting, and then leverage to advance post-genomic science. Pointing to the situatedness of homogeneity and heterogeneity in gene–environment interaction research underscores the work that these properties do and the contingencies that shape decisions about research procedures. Through a focus on the situational production of homogeneity and heterogeneity more broadly, we find that gene–environment interaction research attempts to shift the logic of difference from solely racial terms as explanatory ends unto themselves, to racial and other dimensions of difference that may be important clues to the causes of complex diseases. PMID:25272613

  1. Big Data in Plant Science: Resources and Data Mining Tools for Plant Genomics and Proteomics.

    PubMed

    Popescu, George V; Noutsos, Christos; Popescu, Sorina C

    2016-01-01

    In modern plant biology, progress is increasingly defined by the scientists' ability to gather and analyze data sets of high volume and complexity, otherwise known as "big data". Arguably, the largest increase in the volume of plant data sets over the last decade is a consequence of the application of the next-generation sequencing and mass-spectrometry technologies to the study of experimental model and crop plants. The increase in quantity and complexity of biological data brings challenges, mostly associated with data acquisition, processing, and sharing within the scientific community. Nonetheless, big data in plant science create unique opportunities in advancing our understanding of complex biological processes at a level of accuracy without precedence, and establish a base for the plant systems biology. In this chapter, we summarize the major drivers of big data in plant science and big data initiatives in life sciences with a focus on the scope and impact of iPlant, a representative cyberinfrastructure platform for plant science.

  2. Some Ethical Considerations in Astronomy Research and Practice

    NASA Astrophysics Data System (ADS)

    Koepsell, David

    2012-08-01

    Research ethics as an applied field has evolved due to a number of contentious and public lapses in ethical judgment over the past hundred years. But the main principles underlying good, ethical behavior in all of the sciences are rooted in what Robert Merton calls the ethos of science. Values and virtues, including the universal nature of its underlying objects, communal nature of scientific research, the necessity for individual disinterestedness on the part of researchers, and science's nature as organized skepticism, provide a foundation for conducting ethical research. Scientific integrity, the relation between basic science and the general public, and the social role of science all argue for adopting virtues, guiding behavior, and pursing science in ways we can now characterize as ethical in themselves. Being a good scientist and doing good science overlaps significantly with being a good person.

  3. Genome editing: Bioethics shows the way

    PubMed Central

    Caplan, Arthur L.

    2017-01-01

    When some scientists hear the word “bioethics,” they break out in intellectual hives. They shouldn’t. Good bioethics is about enabling science to move forward. Bioethics pushes scientists to acknowledge that they operate not within a vacuum but within a society in which diverse perspectives and values must be engaged. Bioethicists give voice to those divergent perspectives and provide a framework to facilitate informed and inclusive discussions that spur progress, rather than stall it. The field is needed to advance cutting-edge biomedical research in domains in which the benefits to be had are enormous, such as genome editing, but ethical concerns persist. PMID:28301466

  4. Genome editing: Bioethics shows the way.

    PubMed

    Neuhaus, Carolyn P; Caplan, Arthur L

    2017-03-01

    When some scientists hear the word "bioethics," they break out in intellectual hives. They shouldn't. Good bioethics is about enabling science to move forward. Bioethics pushes scientists to acknowledge that they operate not within a vacuum but within a society in which diverse perspectives and values must be engaged. Bioethicists give voice to those divergent perspectives and provide a framework to facilitate informed and inclusive discussions that spur progress, rather than stall it. The field is needed to advance cutting-edge biomedical research in domains in which the benefits to be had are enormous, such as genome editing, but ethical concerns persist.

  5. A quantitative analysis of the mass media coverage of genomics medicine in China: a call for science journalism in the developing world.

    PubMed

    Zhao, Feifei; Chen, Yan; Ge, Siqi; Yu, Xinwei; Shao, Shuang; Black, Michael; Wang, Youxin; Zhang, Jie; Song, Manshu; Wang, Wei

    2014-04-01

    Science journalism is a previously neglected but rapidly growing area of scholarship in postgenomics medicine and socio-technical studies of knowledge-based innovations. Science journalism can help evaluate the quantity and quality of information flux between traditional scientific expert communities and the broader public, for example, in personalized medicine education. Newspapers can play a crucial role in science and health communication, and more importantly, in framing public engagement. However, research on the role of newspaper coverage of genomics-related articles has not been readily available in resource-limited settings. As genomics is rapidly expanding worldwide, this gap in newspaper reportage in China is therefore an important issue. In order to bridge this gap, we investigated the coverage of genomics medicine in eight major Chinese national newspapers, using the China Core Newspapers Full-text Database (CCND) and articles in scientific journals in PubMed from 2000 to 2011. Coverage of genomics medicine in these eight official government Chinese newspapers has remained low, with only 12 articles published per newspaper per year between 2000 and 2011. Between 2000 and 2011, over a 40-fold difference was observed in the number of genomics medicine-related articles in PubMed, as compared to that in newspapers. The numbers of genomics-related articles among the eight major newspapers from 2000 to 2011 were significantly different (p=0.001). Commentary/mini reviews and articles about gene therapy for specific diseases were most frequently published in 2006 and 2011. In parallel, we observed that "cancer gene therapy," "new susceptibility gene locus," and "gene technology revolution" were the top three thematic strands addressed in the newspapers, even though their volume remained low. This study reports on the under-representation of newspaper coverage of genomics medicine in China, despite the vast growth of scientific articles in journals in this

  6. An Investigation of Students' Perceptions of Ethical Practice: Engaging a Reflective Dialogue about Ethics Education in the Health Professions

    ERIC Educational Resources Information Center

    Kinsella, Elizabeth Anne; Phelan, Shanon K.; Lala, Anna Park; Mom, Vanna

    2015-01-01

    The ethical climate in which occupational therapists, and other health practitioners, currently practice is increasingly complex. There have been a number of calls for greater attention to ethics education within health science curricula. This study investigated occupational therapy students' perceptions of the meaning of ethical practice as a…

  7. The genetics of loneliness: linking evolutionary theory to genome-wide genetics, epigenetics, and social science.

    PubMed

    Goossens, Luc; van Roekel, Eeske; Verhagen, Maaike; Cacioppo, John T; Cacioppo, Stephanie; Maes, Marlies; Boomsma, Dorret I

    2015-03-01

    As a complex trait, loneliness is likely to be influenced by the interplay of numerous genetic and environmental factors. Studies in behavioral genetics indicate that loneliness has a sizable degree of heritability. Candidate-gene and gene-expression studies have pointed to several genes related to neurotransmitters and the immune system. The notion that these genes are related to loneliness is compatible with the basic tenets of the evolutionary theory of loneliness. Research on gene-environment interactions indicates that social-environmental factors (e.g., low social support) may have a more pronounced effect and lead to higher levels of loneliness if individuals carry the sensitive variant of these candidate genes. Currently, there is no extant research on loneliness based on genome-wide association studies, gene-environment-interaction studies, or studies in epigenetics. Such studies would allow researchers to identify networks of genes that contribute to loneliness. The contribution of genetics to loneliness research will become stronger when genome-wide genetics and epigenetics are integrated and used along with well-established methods in psychology to analyze the complex process of gene-environment interplay.

  8. Professional Ethics for Climate Scientists

    NASA Astrophysics Data System (ADS)

    Peacock, K.; Mann, M. E.

    2014-12-01

    Several authors have warned that climate scientists sometimes exhibit a tendency to "err on the side of least drama" in reporting the risks associated with fossil fuel emissions. Scientists are often reluctant to comment on the implications of their work for public policy, despite the fact that because of their expertise they may be among those best placed to make recommendations about such matters as mitigation and preparedness. Scientists often have little or no training in ethics or philosophy, and consequently they may feel that they lack clear guidelines for balancing the imperative to avoid error against the need to speak out when it may be ethically required to do so. This dilemma becomes acute in cases such as abrupt ice sheet collapse where it is easier to identify a risk than to assess its probability. We will argue that long-established codes of ethics in the learned professions such as medicine and engineering offer a model that can guide research scientists in cases like this, and we suggest that ethical training could be regularly incorporated into graduate curricula in fields such as climate science and geology. We recognize that there are disanalogies between professional and scientific ethics, the most important of which is that codes of ethics are typically written into the laws that govern licensed professions such as engineering. Presently, no one can legally compel a research scientist to be ethical, although legal precedent may evolve such that scientists are increasingly expected to communicate their knowledge of risks. We will show that the principles of professional ethics can be readily adapted to define an ethical code that could be voluntarily adopted by scientists who seek clearer guidelines in an era of rapid climate change.

  9. Solar Ethics: A New Paradigm for Environmental Ethics and Education?

    ERIC Educational Resources Information Center

    Peters, Michael A.; Hung, Ruyu

    2009-01-01

    This article provides grounds for a new paradigm of environmental ethics and education based on the centrality of the sun and solar system--a shift from anthropocentrism to solar systemism. The article provides some grounds for this shift from the physical sciences that considers the planet Earth as part of a wider system that is dependent upon…

  10. Engineering ethics beyond engineers' ethics.

    PubMed

    Basart, Josep M; Serra, Montse

    2013-03-01

    Engineering ethics is usually focused on engineers' ethics, engineers acting as individuals. Certainly, these professionals play a central role in the matter, but engineers are not a singularity inside engineering; they exist and operate as a part of a complex network of mutual relationships between many other people, organizations and groups. When engineering ethics and engineers' ethics are taken as one and the same thing the paradigm of the ethical engineer which prevails is that of the heroic engineer, a certain model of the ideal engineer: someone both quite individualistic and strong enough to deal with all the moral challenges that could arise. We argue that this is not the best approach, at least today in our interrelated world. We have achieved a high degree of independence from nature by means of technology. In exchange for this autonomy we have become increasingly tied up with very complex systems to which we constantly delegate new tasks and powers. Concerns about safety keep growing everywhere due to the fact that now we have a sensitive awareness of the huge amount of power we are both consuming and deploying, thus, new forms of dialogue and consensus have to be incorporated at different levels, in different forums and at different times. Within these democratic channels of participation not just the needs and interests, but also the responsibilities and mutual commitments of all parties should be taken into account.

  11. Race and Ancestry in the Age of Inclusion: Technique and Meaning in Post-Genomic Science

    PubMed Central

    Shim, Janet K.; Ackerman, Sara L.; Darling, Katherine Weatherford; Hiatt, Robert A.; Lee, Sandra Soo-Jin

    2015-01-01

    This paper examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongside ancestry informative markers (AIMs) to ascertain genetic ancestry. Our participants assess the utility of these two techniques in relative terms, downplaying the accuracy and value of SIRE compared to the precision and necessity of AIMs. In doing so, we argue that post-genomic scientists seeking to understand the interactions of genetic and environmental disease determinants actually undermine their ability to do so, by valorizing precise characterizations of individuals’ genetic ancestry over measurement of the social processes and relations that differentiate social groups. PMID:25378251

  12. Ethical considerations in chimera research.

    PubMed

    Hermerén, Göran

    2015-01-01

    The development of human pluripotent stem cells has opened up the possibility to analyse the function of human cells and tissues in animal hosts, thus generating chimeras. Although such lines of research have great potential for both basic and translational science, they also raise unique ethical issues that must be considered.

  13. Research ethics consultation: ethical and professional practice challenges and recommendations.

    PubMed

    Sharp, Richard R; Taylor, Holly A; Brinich, Margaret A; Boyle, Mary M; Cho, Mildred; Coors, Marilyn; Danis, Marion; Havard, Molly; Magnus, David; Wilfond, Benjamin

    2015-05-01

    The complexity of biomedical research has increased considerably in the last decade, as has the pace of translational research. This complexity has generated a number of novel ethical issues for clinical investigators, institutional review boards (IRBs), and other oversight committees. In response, many academic medical centers have created formal research ethics consultation (REC) services to help clinical investigators and IRBs navigate ethical issues in biomedical research. Key functions of a REC service include assisting with research design and implementation, providing a forum for deliberative exploration of ethical issues, and supplementing regulatory oversight. As increasing numbers of academic research institutions establish REC services, there is a pressing need for consensus about the primary aims and policies that should guide these activities. Establishing clear expectations about the aims and policies of REC services is important if REC programs are to achieve their full potential. Drawing on the experiences of a Clinical and Translational Science Award Research Ethics Consultation Working Group, this article describes three major ethical and professional practice challenges associated with the provision of REC: (1) managing multiple institutional roles and responsibilities, (2) managing sensitive information, and (3) communicating with consultation requestors about how these issues are managed. The paper also presents several practical strategies for addressing these challenges and enhancing the quality of REC services.

  14. Ethical Questions

    ERIC Educational Resources Information Center

    Whiteley, John M.

    1970-01-01

    Eight key areas suggested for discussion by the APA and APGA as bases for formulation of ethical standards are: (1) leader qualifications; (2) limits on procedure; (3) confidentiality of group participants; (4) participant selection; (5) informed consent of participants; (6) freedom of client to withdraw; (7) safeguards for participants against…

  15. Ethical coding.

    PubMed

    Resnik, Barry I

    2009-01-01

    It is ethical, legal, and proper for a dermatologist to maximize income through proper coding of patient encounters and procedures. The overzealous physician can misinterpret reimbursement requirements or receive bad advice from other physicians and cross the line from aggressive coding to coding fraud. Several of the more common problem areas are discussed.

  16. Medical Ethics

    MedlinePlus

    ... donate an organ to a sick relative? Your personal health information: who has access to your records? Patient rights: Do you have the right to refuse treatment? When you talk with your doctor, is it ethical for her to withhold information from you or your family?

  17. Ethical Challenges.

    ERIC Educational Resources Information Center

    Morris, Michael; Posavac, Emil; Russ-Eft, Darlene

    1999-01-01

    The article and commentary in this special section consider the ethical implications of a remark by an employee in a business being evaluated that employees have been advised to make the program look good. Explores the implications for the evaluation and its usefulness. (SLD)

  18. The "contemporary synthesis": when politically inclusive genomic science relies on biological notions of race.

    PubMed

    Fullwiley, Duana

    2014-12-01

    This essay outlines the emergence of a contemporary synthesis regarding racial thinking in genetic science and in society more broadly. A departure from what Julian Huxley in 1942 termed the "modern synthesis," the contemporary version does not purport to leave race thinking behind in favor of evolution, population genetics, and population-based accounts of natural selection and human diversity. Specifically, the contemporary synthesis blends old concepts (such as that of pure human "types," located within continental land masses) with new attitudes (democratic inclusion, multicultural diversity, and anti-racism). Through various examples, the essay shows how this new synthesis combines ideas about human biological difference that draw on measures of physical characteristics and human genetic material that are both race and population based, yet conflated. This specific amalgam allows old notions of racial types to thrive through conceptual framings that comprise ideas that were once imagined to have the potential to liberate society from racial thinking--and that today remain attached to ideas of progress. As an emergent dynamic, the contemporary synthesis holds the possibility of reinvigorating racism, while simultaneously possessing the potential to promote antiracist science education, disease awareness, and social justice efforts.

  19. Science for Real Life

    ERIC Educational Resources Information Center

    Hammerman, Elizabeth

    2008-01-01

    State and national standards identify what students should know and be able to do, including what it means to "do" science, the historical significance of science achievement and its ethical underpinnings, and science from the human perspective. Middle level science programs that address the full range of science standards and connect learning to…

  20. Disclosure of research results from cancer genomic studies: state of the science.

    PubMed

    Dressler, Lynn G

    2009-07-01

    Although the cancer research community has supported a "nondisclosure" position about the return of individual results to research subjects, new technologies, such as genome wide association studies, will reveal clinically relevant findings, some of which cannot be ignored. What recommendations exist that can guide researchers and Institutional Review Boards (IRBs) about this issue? This article summarizes the relevant public documents about the disclosure of individual research results to inform policy development. Four stakeholder groups were selected to make this comparison: federal, professional, advisory, and advocacy groups. Regardless of a group's position on disclosure, there was consensus that if research results were to be disclosed under any condition, the results must be analytically and clinically validated and that the researcher should not make this decision alone, but in conjunction with the IRB. There was no consensus, however, on the specific determinants for disclosure or what constitutes clinical validity. Although sufficient agreement exists to begin developing general guidelines about the process for disclosure of individual research results, the actual determinants with which to guide this decision remain challenging. An alternate framework that addresses the threshold of uncertainty a stakeholder is willing to accept, the positive predictive value of the research finding, and the magnitude of harm of returning results may be more effective to guide decision making. These assessments, along with what is considered useful information, requires the involvement of the research subject community to inform decision-making and move the policy process forward.

  1. Medical ethics in the media.

    PubMed

    Raman, Usha

    2009-01-01

    The mass media function both as reflector and a shaper of a society's attitudes and values and as such represent a forum within which one may understand and influence public opinion. While questions of medical ethics may be largely confined to academic and scientific spaces, their importance to society at large cannot be denied, and how issues of medical ethics play out--if at all--in the media could tell us how society understands and processes these questions. This paper uses the techniques of framing analysis and textual analysis to examine how the print media, represented by two major Indian newspapers, cover medical ethics. The study looked at all articles related to medical research over a three-month period (January-March 2007) and considered how the story was framed, what were the key threads followed, and the dominant themes focused on. The ethical frame is notable by its absence, even in articles related to controversial themes such as drug research and genetics. Discussion of ethics appears to be problematic given the adherence to traditional "news values" when covering science and medicine. The research community and the media need to pay more attention to explicitly focusing on ethics in their interactions.

  2. Foundations for Ethical Standards and Codes: The Role of Moral Philosophy and Theory in Ethics

    ERIC Educational Resources Information Center

    Freeman, Stephen J.; Engels, Dennis W.; Altekruse, Michael K.

    2004-01-01

    Ethical practice is a concern for all who practice in the psychological, social, and behavioral sciences. A central problem is discerning what action is ethically correct in a particular situation. It has been said that there is nothing so practical as good theory, because theory can help counselors organize and integrate knowledge. It seems,…

  3. The "Ethics Committee": A Practical Approach to Introducing Bioethics and Ethical Thinking

    ERIC Educational Resources Information Center

    Goodwin, Mark; Kramer, Cas; Cashmore, Annette

    2012-01-01

    Bioethics is an increasingly important part of the biosciences curriculum at school and in higher education, but few science teachers have much experience of teaching the subject in an engaging or interactive manner. This article sets out a session that allows students to practise the skills of ethical thinking and ethical debate in a relevant…

  4. Do Ethics Classes Teach Ethics?

    ERIC Educational Resources Information Center

    Curzer, Howard J.; Sattler, Sabrina; DuPree, Devin G.; Smith-Genthôs, K. Rachelle

    2014-01-01

    The ethics assessment industry is currently dominated by the second version of the Defining Issues Test (DIT2). In this article, we describe an alternative assessment instrument called the Sphere-Specific Moral Reasoning and Theory Survey (SMARTS), which measures the respondent's level of moral development in several respects. We describe eight…

  5. The Ethic of Community

    ERIC Educational Resources Information Center

    Furman, Gail C.

    2004-01-01

    This article proposes the concept of an ethic of community to complement and extend other ethical frames used in education e.g. the ethics of justice, critique, and care. Proceeding from the traditional definition of ethics as the study of moral duty and obligation, ethic of community is defined as the moral responsibility to engage in communal…

  6. Genomics and Health Impact Update

    MedlinePlus

    ... Publications Birth Defects/ Child Health Cancer Cardiovascular Diseases Chronic Disease Ethics, Policy and Law Genomics in Practice Newborn Screening Pharmacogenomics Reproductive Health Tools/ Databases AMD Clips News Concepts/ Comments Pathogenicity/ Antimicrobial Resistance Epidemiology/ ...

  7. Eer ethics

    SciTech Connect

    Orwant, C.J.

    1994-12-31

    Intelligent agents are personified as epers, electronic personas. Epers can take on various roles as business representatives, financial agents, game players, teachers or civil servants. The ethical deployment of epers requires that they be accountable to their originators, who, in turn, are responsible to the cyberspace communities in which they are involved. Epers must maintain integrity of information, carry out tasks as directed and report accurately on task status. Epers can be custodians of the truth, responsible for certifying that data has not been altered. Public service epers could chair electronic meetings, collect and validate votes on local issues and referee online {open_quotes}flame{close_quotes} wars. Epers` rights include those of privacy, autonomy and anonymity. They could decline to produce information aside from key identifiers and have the right to be protected from arbitrary deletion. Ethical issues include privacy protections, maintenance of appropriate access restrictions, and carrying out business in a secure and trustworthy manner.

  8. Biomedical ethics.

    PubMed

    Walters, LeRoy

    1985-10-25

    An overview is provided of bioethical issues recently under discussion in the United States. Six topics dominated the field in 1984 and early 1985: human gene therapy; in vitro fertilization and research with human embryos; appropriate care for dying patients, both adults and newborns; organ transplantation; resource allocation and payment for health care services; and the role of hospital ethics committees in medical decision making. Walters focuses on three of these topics: (1) the issuing of standards for somatic-cell gene therapy; (2) developments in the death and dying arena, including state living will legislation, the emergence of a viewpoint that artificial nutrition and hydration are not qualitatively different from respiratory life-support systems, and federal efforts to regulate appropriate treatment for handicapped newborns; and (3) the growing support among medical organizations for hospital ethics committees.

  9. Mapping the human genome

    SciTech Connect

    Annas, G.C.; Elias, S.

    1992-01-01

    This article is a review of the book Mapping the Human Genome: Using Law and Ethics as Guides, edited by George C. Annas and Sherman Elias. The book is a collection of essays on the subject of using ethics and laws as guides to justify human gene mapping. It addresses specific issues such problems related to eugenics, patents, insurance as well as broad issues such as the societal definitions of normality.

  10. A comparative analysis of moral principles and behavioral norms in eight ethical codes relevant to health sciences librarianship, medical informatics, and the health professions

    PubMed Central

    Byrd, Gary D.; Winkelstein, Peter

    2014-01-01

    Objective: Based on the authors' shared interest in the interprofessional challenges surrounding health information management, this study explores the degree to which librarians, informatics professionals, and core health professionals in medicine, nursing, and public health share common ethical behavior norms grounded in moral principles. Methods: Using the “Principlism” framework from a widely cited textbook of biomedical ethics, the authors analyze the statements in the ethical codes for associations of librarians (Medical Library Association [MLA], American Library Association, and Special Libraries Association), informatics professionals (American Medical Informatics Association [AMIA] and American Health Information Management Association), and core health professionals (American Medical Association, American Nurses Association, and American Public Health Association). This analysis focuses on whether and how the statements in these eight codes specify core moral norms (Autonomy, Beneficence, Non-Maleficence, and Justice), core behavioral norms (Veracity, Privacy, Confidentiality, and Fidelity), and other norms that are empirically derived from the code statements. Results: These eight ethical codes share a large number of common behavioral norms based most frequently on the principle of Beneficence, then on Autonomy and Justice, but rarely on Non-Maleficence. The MLA and AMIA codes share the largest number of common behavioral norms, and these two associations also share many norms with the other six associations. Implications: The shared core of behavioral norms among these professions, all grounded in core moral principles, point to many opportunities for building effective interprofessional communication and collaboration regarding the development, management, and use of health information resources and technologies. PMID:25349543

  11. Positioning a medical school for modern biomedical research: the department of genome sciences at the University of Washington School of Medicine.

    PubMed

    Fields, Stanley; Nickerson, Deborah A; Waterston, Robert H; Ramsey, Paul G

    2006-10-01

    The availability of genome sequences from a multitude of organisms, which began about a decade ago, has had enormous impact throughout the biomedical sciences. These sequence data have changed the way research studies are carried out and have led to the explosive growth of computational biology as an approach to analyze biological processes and evolution. In medicine, the completion of the human genome sequence has illuminated the function of many genes, facilitated the correlation of mutant genes to disease phenotypes, and provided a basis for the study of human variation. At the University of Washington, the two academic departments whose overall programs were most centrally affected by the sequencing revolution were Genetics and Molecular Biotechnology. These departments were fused in 2001 to form the Department of Genome Sciences in order to best exploit these developments and to become a prototype for the basic biomedical science department of the future. The department's goal is to address leading-edge questions in biology and medicine through the application of genetics, genomics, proteomics, and computational approaches to the increasing collection of known genome sequences and their encoded products. The authors review the events that led up to the founding of this department and discuss the initiatives that have been undertaken, which include the recruitment of faculty, the establishment of a new interdisciplinary graduate program, the continued development of an outreach program, and the construction of a building to house the department. Lessons learned in crafting this department are also discussed, as well as how these might apply to other medical schools.

  12. Focus on Teaching: Ethics.

    ERIC Educational Resources Information Center

    Worley, Rebecca B.; Dyrud, Marilyn A.

    1998-01-01

    Notes that business today is concerned with the translation and application of ethical principles into everyday business life. Offers a list of Web sites on ethics and business ethics at various colleges and universities. (SR)

  13. GENOMICS AND ENVIRONMENTAL RESEARCH

    EPA Science Inventory

    The impact of recently developed and emerging genomics technologies on environmental sciences has significant implications for human and ecological risk assessment issues. The linkage of data generated from genomics, transcriptomics, proteomics, metabalomics, and ecology can be ...

  14. Science.

    ERIC Educational Resources Information Center

    Roach, Linda E., Ed.

    This document contains the following papers on science instruction and technology: "A 3-D Journey in Space: A New Visual Cognitive Adventure" (Yoav Yair, Rachel Mintz, and Shai Litvak); "Using Collaborative Inquiry and Interactive Technologies in an Environmental Science Project for Middle School Teachers: A Description and…

  15. The Ethics of Human Spaceflight

    NASA Technical Reports Server (NTRS)

    Zoloth, Laurie

    2005-01-01

    This chapter intends to lay out some essential ethics questions that might frame the next step of space exploration. In this, I undertake two sorts of tasks. The first is to respond to the core ethic question: Is it ethical to travel in space? The second, assuming for the moment that I can convince you that the first premise can be justified, is to comment on what ethical challenges will face us there. It is appropriate to have a philosopher comment on this at the fortieth anniversary celebration, since it was also in 1962 that the National Academy of Science first convened a panel of philosophers to comment on space travel. They asked at that time whether it was indeed a worthwhile pursuit to travel in space and what might be expected of such an effort. What is at stake in any such boundary crossing is how the changing of essential human perimeters changes our own moral status. Will such boundary crossing worsen our human condition, or will it enhance it? In this way, the geopolitical quest is then linked to the quest for ontology, Pisarro hunting for the fountain of youth, for gold, and for territory. What follows are a series of ethical claims that link the problem of discovery in the larger world and the attendant ethical dilemmas of our explorations, as well as how this exploration alters our concepts of life on Earth. In this, the role of the ethicist is to function as both a skeptic and a stranger, aware of the optimism of science and the pessimism of philosophy.

  16. A procedural, pragmatist account of ethical objectivity.

    PubMed

    Roth, Amanda

    2013-06-01

    This article offers a procedural, pragmatist account of objectivity in the domain of the good that is inspired by pragmatic and feminist critiques of objectivity in philosophy of science and epistemology. I begin by asking first what we want to capture--or ought to want to capture--with a notion of ethical objectivity and in answer to this question I identify four "points" to ethical objectivity: undergirding the possibility of mistakenness, making genuine disagreement possible, making sense of our appreciation of the ethical perspectives of others, and making possible a sense of ethical improvement or learning. I then lay out a process-based account of objectivity in ethics that makes good on the four points I have identified. Finally, I consider worries related to convergence, bias, and ontology and defend the procedural, pragmatist account in light of those potential objections.

  17. Developing Resources for Teaching Ethics in Geoscience

    NASA Astrophysics Data System (ADS)

    Mogk, David W.; Geissman, John W.

    2014-11-01

    Ethics education is an increasingly important component of the pre-professional training of geoscientists. Geoethics encompasses the values and professional standards required of geoscientists to work responsibly in any geoscience profession and in service to society. Funding agencies (e.g., the National Science Foundation, the National Institutes of Health) require training of graduate students in the responsible conduct of research; employers are increasingly expecting their workers to have basic training in ethics; and the public demands the highest standards of ethical conduct by scientists. However, there is currently no formal course of instruction in ethics in the geoscience curriculum, and few faculty members have the experience, resources, and sometimes willingness required to teach ethics as a component of their geoscience courses.

  18. Ethics consultation.

    PubMed

    Kelly, D F; Hoyt, J W

    1996-01-01

    This article comprehensively addresses the composition, role, and functions of a hospital ethics committee (HEC). HECs are of particular interest to critical care specialists because they often participate in or lead such committees, extending their commitment to communication and caring beyond the borders of the intensive care unit (ICU). This article also demonstrates that a well-run ICU in a hospital with a strong HEC automatically will include many of the services that the HEC normally would provide, without the need for HEC assistance.

  19. Ethics in 15-minutes per Week

    PubMed Central

    Peiffer, Ann M.; Hugenschmidt, Christina E.; Laurienti, Paul J.

    2013-01-01

    The demand for science trainees to have appropriate responsible conduct of research instruction continues to increase the attention shown by federal agencies and graduate school programs to the development of effective ethics curriculums. However, it is important to consider that the main learning environment for science graduate students and post-doctoral research fellows is within a laboratory setting. Here we discuss an internal laboratory program of weekly 15-minute ethics discussions implemented and used over the last three years in addition to the graduate school's program of scientific integrity training. During this time, the environment and culture within our laboratory has changed to place greater emphasis on the ethical implications of our own research and the research we evaluate. We still struggle with how to accurately assess this behavioral change; although, we present preliminary survey results on the evaluation and impact of this style of curriculum for ethics instruction in our laboratory. PMID:20213534

  20. Behavioral Ethics and Teaching Ethical Decision Making

    ERIC Educational Resources Information Center

    Drumwright, Minette; Prentice, Robert; Biasucci, Cara

    2015-01-01

    Business education often renders students less likely to act ethically. An infusion of liberal learning in the form of behavioral ethics could improve this situation by prompting students to develop higher levels of professionalism that encompass ethics, social responsibility, self-critical reflection, and personal accountability. More…