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Sample records for research participants undergoing

  1. Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation.

    PubMed

    Keusch, Florian; Rao, Rohini; Chang, Lawrence; Lepkowski, James; Reddy, Pavan; Choi, Sung Won

    2014-10-01

    Despite major improvements over the past several decades, many patients undergoing hematopoietic stem cell transplantations (HSCT) continue to suffer from significant treatment-related morbidity and mortality. Clinical research studies (trials) have been integral to advancing the standard of care in HSCT. However, 1 of the biggest challenges with clinical trials is the low participation rate. Although barriers to participation in cancer clinical trials have been previously explored, studies specific to HSCT are lacking. The current study was undertaken to examine the knowledge, attitudes, and perceptions of HSCT patients regarding clinical trials. As members of focus groups, participants responded to open-ended questions that assessed factors influencing decision-making about HSCT clinical trials. Suggestions for improvements in the recruitment process were also solicited among participants. Seventeen adult HSCT patients and 6 parents of pediatric HSCT patients participated in the study. The median age was 56 years (range, 18 to 70) and 44 years (range, 28 to 54) for adult patients and parents, respectively. Participants universally indicated that too much information was provided within the informed consents and they were intimidated by the medical and legal language. Despite the large amount of information provided to them at the time of study enrollment, the participants had limited knowledge retention and recall of study details. Nevertheless, participants reported overall positive experiences with clinical trial participation and many would readily choose to participate again. A common concern among participants was the uncertainty of study outcome and general lack of feedback about results at the end of the study. Participants suggested that investigators provide more condensed and easier to understand informed consents and follow-up of study findings. These findings could be used to help guide the development of improved consent documents and enhanced

  2. [Discussion paper participation research].

    PubMed

    Farin, Erik

    2012-12-01

    This contribution introduces the "Diskussionspapier Teilhabeforschung" (discussion paper participation research) of the German Association for Rehabilitation (DVfR) and German Society for Rehabilitation Science (DGRW). The aim of this paper is to more clearly define current scientific research activity on the subject of participation and the significance of interdisciplinary participation research. The authors emphasise the desirability of a stronger scientific basis for instruments designed to improve the participation of disabled individuals. The paper is meant to be understood as an initial basis for the discussion about participation research development, and the authors are open to suggestions and elaboration.Participation research is understood in this discussion paper as an interdisciplinary research field with 7 goals and characteristics: 1. focussing on participation and self-determination; 2. contextual approach (taking environmental and personal factors into consideration that affect participation); 3. the participation of disabled persons in participation research; 4. interdisciplinary cooperation; 5. involving organisations and institutions whose approaches to participation research overlap; 6. referring to social and healthcare policies; 7. national and international orientations.The authors discuss the rationale behind increasing the support for participation research and theoretical models thereof. Fundamental concepts with high relevance to participation research include the biopsychosocial model of the International Classification of Functionality, Disability and Health (ICF), the inclusion concept, empowerment concept, and capabilities concept. The authors conclude their paper with recommendations for strengthening the research funding for participation research, and specify concrete steps toward greater participation research. PMID:23235948

  3. Explanations of AD in ethnic minority participants undergoing cognitive screening.

    PubMed

    Tappen, Ruth M; Gibson, Sandra E; Williams, Christine L

    2011-06-01

    The purpose of this study was to describe and compare explanations of Alzheimer's disease (AD) of African American, Afro-Caribbean, and European American older adults undergoing cognitive screening. Participants were asked a series of open-ended questions regarding what they knew about AD and if they were experiencing memory problems. Responses were coded and quantized for analysis. Forty percent reported experiencing memory problems. Afro-Caribbeans made significantly more incorrect statements about AD and were less likely to identify memory loss as a symptom. Half the participants said they would seek their physician's advice if the screening was positive; none mentioned a memory disorder center. Misconceptions about AD included the effect of aluminum, brain collapse, relaxed brain, shaking, tremors, and physical illness. More Afro-Caribbeans, all of whom were first generation, had misconceptions about AD. Campaigns to educate the public about AD need to provide culturally sensitive and appropriate information to ethnic minority populations. PMID:21697141

  4. Researching participant recruitment times.

    PubMed

    O'Brien, Rachel; Black, Polly

    2015-11-01

    Conducting research in emergency departments is relatively new, and there are a number of ethical and practical challenges to recruiting patients in these settings. In 2008, the Emergency Medicine Research Group Edinburgh (EMERGE) was set up at the Royal Infirmary of Edinburgh emergency department to support researchers and encourage the growth of research in emergency medicine. As part of a review of their working methods, the group's clinical nurse researchers undertook a small study to identify participant recruitment times. The results showed a significant difference between perceived and actual recruitment times, which has implications for planning staff numbers and budgets. This article describes the evaluation process and methods of data collection, and discusses the results. PMID:26542924

  5. Undergraduate Research Summer Fellowships Undergo Change

    NASA Astrophysics Data System (ADS)

    Elgren, Timothy E.

    2000-09-01

    At the 22nd Annual Council Meeting of Council on Undergraduate Research (CUR), held this past June at the College of Wooster, the general council voted to make fundamental changes to the Undergraduate Research Summer Fellowship Program. The most important change is that awards will no longer be made to individual students. Instead, awards will be made to individual faculty member on the basis of applications written by faculty members comprised of a curriculum vitae, a description of the proposed research project, and the role of undergraduate collaborators in the proposed research activities. This change brings the program more in line with the overall CUR objective to support faculty in their efforts to provide research experiences for undergraduate students. Faculty members selected for awards will be asked to designate a student recipient at the time the funds are awarded, a key change to the fellowship program.

  6. Individualized Comprehensive Lifestyle Intervention in Patients Undergoing Chemotherapy with Curative or Palliative Intent: Who Participates?

    PubMed Central

    Vassbakk-Brovold, Karianne; Lian, Henrik; Mjåland, Odd; Seiler, Stephen

    2015-01-01

    Objective Knowledge about determinants of participation in lifestyle interventions in cancer patients undergoing chemotherapy, particularly with palliative intent, remains poor. The objective of the present study was to identify determinants of participating in a 12 month individualized, comprehensive lifestyle intervention, focusing on diet, physical activity, mental stress and smoking cessation, in cancer patients receiving chemotherapy with curative or palliative intent. The secondary objective was to identify participation determinants 4 months into the study. Methods Newly diagnosed cancer patients starting chemotherapy at the cancer center in Kristiansand/Norway (during a 16 month inclusion period) were screened. Demographic and medical data (age, sex, body mass index, education level, marital status, smoking status, Eastern Cooperative Oncology Group performance status (ECOG), diagnosis, tumor stage and treatment intention) was analyzed for screened patients. Results 100 of 161 invited patients participated. There were more females (69 vs. 48%; P = 0.004), breast cancer patients (46 vs. 25%; P = 0.007), non-smokers (87 vs. 74%; P = 0.041), younger (mean age 60 vs. 67 yrs; P < 0.001) and fitter (82 vs. 64% with EGOC 0; P = 0.036) participants vs. non-participants included. In multivariate logistic regression analyses, age (Odds Ratio 0.94, 95% Confidence Interval 0.91, 0.97) and smoking (0.42, 0.18, 0.99) were negatively associated with participation. After 4 months, 63 participants were still participating. Cancer type, smoking and age increased the probability of dropping out. Multivariate logistic regression revealed that age was the only significant determinant of 4 month participation (0.95, 0.91, 0.99). Patients aged >70 years were less likely to participate at baseline and 4 months. Conclusion Individualized lifestyle interventions in cancer patients undergoing chemotherapy appear to facilitate a high participation rate that declines with increasing

  7. Optimizing Clinical Research Participant Selection with Informatics

    PubMed Central

    Weng, Chunhua

    2015-01-01

    Clinical research participants are often not reflective of the real-world patients due to overly restrictive eligibility criteria. Meanwhile, unselected participants introduce confounding factors and reduce research efficiency. Biomedical Informatics, especially Big Data increasingly made available from electronic health records, offers promising aids to optimize research participant selection through data-driven transparency. PMID:26549161

  8. Racial disparities in participation in biomedical research.

    PubMed Central

    Kressin, N. R.; Meterko, M.; Wilson, N. J.

    2000-01-01

    To determine whether minority patients were less likely to participate in biomedical research, perceive positive benefits from such participation, or to recommend research participation to other patients, an observational study was conducted. Sociodemographic and survey data were collected from 5436 users of Department of Veterans Affairs (VA) Ambulatory Care, which included questions about veterans' research participation and related attitudes. Bivariate and multivariate analyses were performed to determine if there were racial differences in the outcomes of interest, controlling for relevant sociodemographic factors. Bivariate and multivariate analyses indicated that there were no racial differences in self-reported research participation, but minority veterans were more likely to perceive a positive effect of research and less likely to recommend research to other veterans. However, subgroup analyses indicated that, of those veterans having negative attitudes about research, minority and less educated veterans were disproportionately represented. In the VA system, racial differences in research participation may dissipate because many sociodemographic factors are controlled. Although we did not observe consistent racial differences in research participation or attitudes, the fact that minority veterans were disproportionately represented among the group with the most negative attitudes about research suggests that further research is necessary to fully understand the racial dynamics of research participation in the VA. PMID:10800293

  9. Developing Informed Research Participants in an Introductory Psychology Participant Pool

    ERIC Educational Resources Information Center

    Sullivan, Michael P.; Lashley, Sarah L.

    2009-01-01

    This activity offers a way to use the informed consent procedure to help students better understand the responsibilities of research participants. During a class activity, students completed a brief study. The study included presentation of consent forms and questionnaires before a surprise quiz over material from the consent form and a discussion…

  10. Assessing the Perceived Value of Research Participation

    ERIC Educational Resources Information Center

    VanWormer, Lisa A.; Jordan, Erica F.; Blalock, Lisa Durrance

    2014-01-01

    Undergraduate psychology majors are encouraged to engage in research to improve understanding of research methods and increase research skills. This study examines the potential of volunteering as a research participant to increase student perceptions of knowledge and interest in research. Undergraduate students completed a survey regarding the…

  11. The Obligation to Participate in Biomedical Research

    PubMed Central

    Schaefer, G. Owen; Emanuel, Ezekiel J.; Wertheimer, Alan

    2009-01-01

    The prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support that important public good. Consequently, we all have a duty to participate. The current social norm is that people participate only if they have a good reason to do so. The public goods argument implies that people should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making our society significantly healthier and longer-lived. PMID:19567441

  12. On Measuring Community Participation in Research

    ERIC Educational Resources Information Center

    Khodyakov, Dmitry; Stockdale, Susan; Jones, Andrea; Mango, Joseph; Jones, Felica; Lizaola, Elizabeth

    2013-01-01

    Active participation of community partners in research aspects of community-academic partnered projects is often assumed to have a positive impact on the outcomes of such projects. The value of community engagement in research, however, cannot be empirically determined without good measures of the level of community participation in research…

  13. Child Participant Roles in Applied Linguistics Research

    ERIC Educational Resources Information Center

    Pinter, Annamaria

    2014-01-01

    Children's status as research participants in applied linguistics has been largely overlooked even though unique methodological and ethical concerns arise in projects where children, rather than adults, are involved. This article examines the role of children as research participants in applied linguistics and discusses the limitations of…

  14. VIEWING RESEARCH PARTICIPATION AS A MORAL OBLIGATION

    PubMed Central

    RENNIE, STUART

    2015-01-01

    A moral paradigm shift has proposed for participation in health-related research. It’s not just a praiseworthy option, some say; it’s a social obligation. Recasting research participation in this way would have global ramifications, however. Who ultimately stands to gain the most from it, and who has the most to lose? PMID:21495516

  15. Participation in research bronchoscopy: a literature review

    PubMed Central

    Martinsen, Einar Marius Hjellestad; Leiten, Elise Orvedal; Bakke, Per Sigvald; Eagan, Tomas Mikal Lind; Grønseth, Rune

    2016-01-01

    Bronchoscopy is the preferred method for collecting biological samples from the lower airways of subjects in clinical research. However, ensuring participation in clinical research can be challenging when the research includes an invasive procedure. For this report we reviewed the literature to look for information on participation in research bronchoscopy studies to better design our own study, the Bergen COPD Microbiome study (MicroCOPD). We performed a systematic literature search on participation in research bronchoscopy studies in February 2014 using the search engines of PubMed and EMBASE. The literature search resulted in seven relevant papers. Motivation was an end point in six of the seven papers, but reasons for declining participation and recruitment strategies also seemed important. Human subjects participate in research bronchoscopy studies for personal benefit and altruistic reasons. Inconvenience associated with research, in addition to fear of procedures, is considered a barrier. Radio, especially news stations, generated the most inquiries for a clinical study involving bronchoscopy. There is a lack of information on participation in research bronchoscopy studies in the literature. A bronchoscopy study has been initiated at Haukeland University Hospital, Bergen, Norway, to examine the role of the microbiome in COPD, and participation will be explored as a substudy. PMID:26847517

  16. Participation in research bronchoscopy: a literature review.

    PubMed

    Martinsen, Einar Marius Hjellestad; Leiten, Elise Orvedal; Bakke, Per Sigvald; Eagan, Tomas Mikal Lind; Grønseth, Rune

    2016-01-01

    Bronchoscopy is the preferred method for collecting biological samples from the lower airways of subjects in clinical research. However, ensuring participation in clinical research can be challenging when the research includes an invasive procedure. For this report we reviewed the literature to look for information on participation in research bronchoscopy studies to better design our own study, the Bergen COPD Microbiome study (MicroCOPD). We performed a systematic literature search on participation in research bronchoscopy studies in February 2014 using the search engines of PubMed and EMBASE. The literature search resulted in seven relevant papers. Motivation was an end point in six of the seven papers, but reasons for declining participation and recruitment strategies also seemed important. Human subjects participate in research bronchoscopy studies for personal benefit and altruistic reasons. Inconvenience associated with research, in addition to fear of procedures, is considered a barrier. Radio, especially news stations, generated the most inquiries for a clinical study involving bronchoscopy. There is a lack of information on participation in research bronchoscopy studies in the literature. A bronchoscopy study has been initiated at Haukeland University Hospital, Bergen, Norway, to examine the role of the microbiome in COPD, and participation will be explored as a substudy. PMID:26847517

  17. Frail Older People as Participants in Research

    ERIC Educational Resources Information Center

    Peel, Nancye M.; Wilson, Cecilia

    2008-01-01

    This article describes the experience of interviewing frail older people in a research project investigating hip fracture risk factors. Specific methodological strategies to maximize participation and data quality and to facilitate the interview process related to participant inclusion criteria, initial approach, questionnaire format, and…

  18. Toward ethical research practice with deaf participants.

    PubMed

    Singleton, Jenny L; Jones, Gabrielle; Hanumantha, Shilpa

    2014-07-01

    In recent years, scholars have been critical of what they consider unethical conduct by researchers whose studies focus on members of the Deaf or signing communities. This is the first empirical study that investigates ethical concerns and recommendations from the perspective of three stakeholder groups (Deaf research participants, researchers, and Deaf studies experts). We analyzed focus group discussions using strategies from grounded theory and community-based participatory research. The themes we identified highlight the need for the broader scientific research community to include linguistically and culturally sensitive research procedures that more adequately protect the rights of Deaf research participants, as well as other marginalized groups. We address the need to increase the number of Deaf scientists and reconsider collaboration practices between Deaf and hearing researchers. PMID:25746786

  19. Reactions to research participation in vulnerable subgroups.

    PubMed

    Widom, Cathy Spatz; Czaja, Sally J

    2005-01-01

    This paper describes the extent to which vulnerable individuals (defined by economic, social, psychological, physical health, and child maltreatment status) react to research participation. As part of an ongoing longitudinal study, participants (N=896) completed a lengthy and intrusive in-person interview and provided a small amount of blood through finger pricks. At the end of the interview, participants were asked eight questions about their reactions to the research experience. Vulnerable individuals in general agreed more strongly about having an emotional reaction, but were not less willing to continue to participate. In addition, psychologically vulnerable individuals more strongly agreed they would continue to participate, were treated with respect and dignity, and found their participation meaningful. Compared to whites, nonwhites reported stronger agreement about the meaningfulness of the research and the belief that their responses would be kept private. Like others, individuals vulnerable by virtue of their prisoner status or homelessness (past or current) agreed more strongly about having an emotional reaction to the interview, but otherwise did not differ in their reactions. These results suggest that researchers and institutional review boards should not be deterred from conducting research on sensitive topics with potentially vulnerable populations. PMID:16220625

  20. Challenges to participation in action research.

    PubMed

    de Toledo, Renata Ferraz; Giatti, Leandro Luiz

    2015-03-01

    In order to understand and take action in complex health and environmental issues, we intend to analyse the conditions that are needed for those at risk to participate in research and intervention projects. In this study, we describe and discuss an action research experience carried out with an indigenous community in the Brazilian Amazon that suffers from serious sanitary problems, where cultural aspects in the relationship with the environment and health are particularly relevant. Different types of tools were deployed and combined and were subsequently classified according to their dialectic efficacy and ability to both conduct and steer the research and encourage the participation of social actors within a process of feedback. Even tools that were considered to be non-dialectic proved to be important sources of feedback. We present a research flow as a model of analysis and a framework for implementing action research, in which challenges to the participation of social actors are classified according to their priority through a critical review of the methodology developed. These challenges are social mobilization, co-operation, appropriation and a proactive stance. We conclude that a cyclic combination of dialectic and non-dialectic tools can increase participation, which though difficult to achieve is nevertheless necessary. During the development of this process, social mobilization is a prerequisite, whereas a proactive stance, the highest level of participation, requires continuous effort and the successive deployment of a variety of tools. PMID:25239444

  1. Recruiting Research Participants at Community Education Sites

    PubMed Central

    SADLER, GEORGIA ROBINS; PETERSON, MELANIE; WASSERMAN, LINDA; MILLS, PAUL L.; MALCARNE, VANESSA L.; ROCK, CHERYL; ANCOLI-ISRAEL, SONIA; MOORE, AMANDA; WELDON, RAI-NESHA; GARCIA, TENISHA; KOLODNER, RICHARD D.

    2006-01-01

    Background Minority groups are underrepresented in research, making it difficult to apply medical advances with confidence. In this study, we explored whether community-based cancer education sites and educators serving the African American community could be used to recruit minority participants to research. Methods We invited Individuals at community education sites to provide buccal scrapings, saliva samples, psychometric data, and personal information anonymously. Results Culturally aligned community sites (100%) collaborated in the research recruitment, as did 83% of the individuals at those sites. Conclusion Community-based education sites offer exceptional promise for teaching about research benefits and recruiting members of minority groups to research studies. PMID:16497136

  2. What Should Be Disclosed to Research Participants?

    PubMed Central

    Wendler, David

    2014-01-01

    Debate surrounding the SUPPORT study highlights the absence of consensus regarding what information should be disclosed to potential research participants. Some commentators endorse the view that clinical research should be subject to high disclosure standards, even when it is testing standard-of-care interventions. Others argue that trials assessing standard-of-care interventions need to disclose only the information that is disclosed in the clinical care setting. To resolve this debate, it is important to identify the ethical concerns raised by clinical research and determine what consent process is needed to address them. PMID:24256522

  3. Graduate engineering research participation in aeronautics

    NASA Technical Reports Server (NTRS)

    Roberts, A. S., Jr.

    1984-01-01

    Graduate student engineering research in aeronautics at Old Dominion University is surveyed. Student participation was facilitated through a NASA sponsored university program which enabled the students to complete degrees. Research summaries are provided and plans for the termination of the grant program are outlined. Project topics include: Failure modes for mechanically fastened joints in composite materials; The dynamic stability of an earth orbiting satellite deploying hinged appendages; The analysis of the Losipescu shear test for composite materials; and the effect of boundary layer structure on wing tip vortex formation and decay.

  4. Basic Science Research and the Protection of Human Research Participants

    NASA Astrophysics Data System (ADS)

    Eiseman, Elisa

    2001-03-01

    Technological advances in basic biological research have been instrumental in recent biomedical discoveries, such as in the understanding and treatment of cancer, HIV/AIDS, and heart disease. However, many of these advances also raise several new ethical challenges. For example, genetic research may pose no physical risk beyond that of obtaining the initial blood sample, yet it can pose significant psychological and economic risks to research participants, such as stigmatization, discrimination in insurance and employment, invasion of privacy, or breach of confidentiality. These harms may occur even when investigators do not directly interact with the person whose DNA they are studying. Moreover, this type of basic research also raises broader questions, such as what is the definition of a human subject, and what kinds of expertise do Institutional Review Boards (IRBs) need to review the increasingly diverse types of research made possible by these advances in technology. The National Bioethics Advisory Commission (NBAC), a presidentially appointed federal advisory committee, has addressed these and other ethical, scientific and policy issues that arise in basic science research involving human participants. Two of its six reports, in particular, have proposed recommendations in this regard. "Research Involving Human Biological Materials: Ethical and Policy Guidance" addresses the basic research use of human tissues, cells and DNA and the protection of human participants in this type of research. In "Ethical and Policy Issues in the Oversight of Human Research" NBAC proposes a definition of research involving human participants that would apply to all scientific disciplines, including physical, biological, and social sciences, as well as the humanities and related professions, such as business and law. Both of these reports make it clear that the protection of research participants is key to conducting ethically sound research. By ensuring that all participants in

  5. Ethical Considerations in Research Participation Virality.

    PubMed

    Ellis-Barton, Carol

    2016-07-01

    This article seeks to commence and encourage discussion around the upcoming ethical challenges of virality in network structures. When the call for participation in a research project on lupus in Ireland went from an advertisement in a newsletter to a meme (unit of transmissible information) on a closed Facebook page, the ethical considerations of virality were raised. The article analyzes the Association of Internet Researchers guidelines, Facebook policies, and the context of privacy in relation to virality. Virality creates the leverage for methodological pluralism. The nature of the inquiry can determine the method rather than the other way around. Viral ethical considerations are evolving due to the cyber world becoming the primary meme of communication, with flexibility in the researcher's protocol providing opportunities for efficient, cost-effective, and diverse recruitment. PMID:27534590

  6. Research subject advocate: a new protector of research participants.

    PubMed

    Neill, Kathleen M

    2003-01-01

    In 2001, the National Center for Research Resources (NCRR) directed the 78 General Clinical Research Centers (GCRC) to develop a Research Subject Advocate (RSA) position. The RSA would report directly to the Principal Investigator (PI) of each GCRC and assure compliance of studies conducted on the GCRC with federal regulations and policies. Seven RSAs agreed to be interviewed about their new role. Website documents, electronic correspondence, and presentations at the first annual national meeting of RSAs were scrutinized using discursive analysis to shed light on this new organizational form and its potential for increased protection of human research participants. The RSA role actualizes the ethical principles of respect for persons, justice, and beneficence that are the foundation of the protection of research participants. The results also reveal the regulatory, institutional, collegial, and personal resources and barriers that assist the RSA in the successful implementation of the RSA role. In addition, issues important to the RSAs are described. PMID:14979318

  7. Music Participation: Theory, Research, and Policy.

    ERIC Educational Resources Information Center

    Gates, J. Terry

    1991-01-01

    Bases a music participation theory on findings in music education, ethnomusicology, and sociology of leisure. Posits six types of music participants: professionals, apprentices, amateurs, hobbyists, recreationists, and dabblers. Distinguishes each type by theoretical variations in cost-benefit relationships as perceived by participants. Discusses…

  8. Parents' Perspectives on Participating in Genetic Research in Autism

    ERIC Educational Resources Information Center

    Trottier, Magan; Roberts, Wendy; Drmic, Irene; Scherer, Stephen W.; Weksberg, Rosanna; Cytrynbaum, Cheryl; Chitayat, David; Shuman, Cheryl; Miller, Fiona A.

    2013-01-01

    Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants' needs in the research process. We report on families' motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt,…

  9. A review of research on nanoparticulate flow undergoing coagulation

    NASA Astrophysics Data System (ADS)

    Lin, Jianzhong; Huo, Linlin

    2015-06-01

    Nanoparticulate flows occur in a wide range of natural phenomena and engineering applications and, hence, have attracted much attention. The purpose of the present paper is to provide a review of the research conducted over the last decade. The research covered relates to the Brownian coagulation of monodisperse and polydisperse particles, the Taylor-series expansion method of moment, and nanoparticle distributions due to coagulation in pipe and channel flow, jet flow, and the mixing layer and in the process of flame synthesis and deposition.

  10. A Video Introduction to Psychology: Enhancing Research Interest and Participation

    ERIC Educational Resources Information Center

    Sacco, Donald F.; Bernstein, Michael J.

    2010-01-01

    To assess the extent to which a video about psychological research would heighten introductory psychology students' interest and participation in research studies, we created a video about ongoing research at our university, the value of research participation, and course requirements for the research experience. Instructors in 4 courses (N = 471…

  11. Giving Light to Voice: Individual Stories of Photovoice Research Participation

    ERIC Educational Resources Information Center

    Morton, Janet Lee

    2012-01-01

    The purpose of this research was to describe the individual experiences of support group members from a vulnerable population who had participated in Photovoice, a participatory action research strategy aimed at social change. The two research questions that guided this research were: 1. What are the experiences of individuals participating in a…

  12. Applying Equity Theory to Students' Perceptions of Research Participation Requirements

    ERIC Educational Resources Information Center

    Miles, Shannon R.; Cromer, Lisa DeMarni; Narayan, Anupama

    2015-01-01

    Human subject pools have been a valuable resource to universities conducting research with student participants. However, the costs and benefits to student participants must be carefully weighed by students, researchers, and institutional review board administrators in order to avoid coercion. Participant perceptions are pivotal in deciding…

  13. Assessing the Experience of Medically Ill Youth Participating in Psychological Research: Benefit, Burden, or Both?

    PubMed Central

    Wiener, L; Battles, H; Zadeh, S; Pao, M

    2014-01-01

    Few data exist pertaining to the perceived burdens or benefits of medically ill children participating in psychological research studies, particularly in outpatient pediatric settings. As part of a larger study that involved completing self-report questionnaires, this study assessed whether participation was burdensome and/or beneficial to 271 children undergoing treatment for cancer, NF1, sickle cell, HIV, primary immune deficiencies, and Li Fraumeni and to their caregivers. The majority of patients (83%) and their caregivers (93%) did not find participating burdensome. Moreover, the majority of patients (85%) and caregivers (95%) found at least some benefit to participation, including finding it helpful to be asked about issues that affect their life and feeling good about helping others. The data suggest that resistance to psychological research based on the belief that such research is intrusive and potentially harmful overestimates the negative aspects and potentially impedes progress studying positive psychosocial outcomes in outpatient pediatric research. PMID:26783591

  14. Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing

    PubMed Central

    Lemke, A.A.; Wolf, W.A.; Hebert-Beirne, J.; Smith, M.E.

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs. PMID:20805700

  15. Participating in Alzheimer's Research: For Yourself and Future Generations

    MedlinePlus

    ... ADEAR Participating in Alzheimer's Research: For Yourself and Future Generations Introduction Participating in a clinical trial or ... prevent Alzheimer's and other diseases, and could help future generations lead healthier lives. "When I was diagnosed ...

  16. Expanding Participation in Fluid Dynamics Research

    NASA Astrophysics Data System (ADS)

    Tagg, Randall

    2015-11-01

    Two legacies provided by great scientists are scientific discoveries and more scientists. Is there a way that these impacts can be magnified? Examples using the Taylor-Couette experiment and other fluid dynamics problems will demonstrate that indeed more people can fruitfully engage in open and even bold investigation. Participants include high school students, teachers, undergraduates, artists, business developers and interested laypersons. With imagination, good training, and a suitable lab space, a special tribute can be given to those who mentor us by scaling up the breadth of their influence.

  17. Research Participation for Course Credit in Introduction to Psychology: Why Don't People Participate?

    ERIC Educational Resources Information Center

    Elicker, Joelle D.; McConnell, Nicole L.; Hall, Rosalie J.

    2010-01-01

    Psychology courses often include an experiential component whereby instructors require or allow students to participate in research or an equitable alternative activity for course credit. We investigated self-reported reasons why students chose to not participate in research, in spite of the potential incentive of earning extra credit. Our sample…

  18. Reactions to Participating in Dating Violence Research: Are Our Questions Distressing Participants?

    ERIC Educational Resources Information Center

    Shorey, Ryan C.; Cornelius, Tara L.; Bell, Kathryn M.

    2011-01-01

    In recent years, there has been increased research focus on dating violence, producing important information for reducing these violent relationships. Yet Institutional Review Boards (IRBs) are often hesitant to approve research on dating violence, citing emotional distress of participants as a possible risk of participation. However, no known…

  19. Developmental Brain Research with Participants from Underprivileged Communities: Strategies for Recruitment, Participation, and Retention

    ERIC Educational Resources Information Center

    Habibi, Assal; Sarkissian, Alissa Der; Gomez, Martha; Ilari, Beatriz

    2015-01-01

    Challenges associated with recruitment and retention of participants from underprivileged social communities, in addition to neuroscience researchers' unfamiliarity with these communities, possibly explain the limited number of individuals from these communities who participate in neuroscience research studies. The consequence is a scarcity of…

  20. Graduate engineering research participation in aeronautics

    NASA Technical Reports Server (NTRS)

    Roberts, A. S., Jr.

    1986-01-01

    The Aeronautics Graduate Research Program commenced in 1971, with the primary goal of engaging students who qualified for regular admission to the Graduate School of Engineering at Old Dominion University in a graduate engineering research and study program in collaboration with NASA Langley Research Center, Hampton, Virginia. The format and purposes of this program are discussed. Student selection and program statistics are summarized. Abstracts are presented in the folowing areas: aircraft design, aerodynamics, lift/drag characteristics; avionics; fluid mechanics; solid mechanics; instrumentation and measurement techniques; thermophysical properties experiments; large space structures; earth orbital dynamics; and environmental engineering.

  1. Researching Educational Praxis: Spectator and Participant Perspectives

    ERIC Educational Resources Information Center

    Kemmis, Stephen

    2012-01-01

    This paper describes two parallel research programmes exploring educational practice/praxis. The first, including a theory of "practice architectures", aims to contribute to contemporary practice theory that views practice from the perspective of a spectator. The second aims to contribute to an emerging (practical philosophy) tradition of…

  2. The neuroimaging research process from the participants' perspective.

    PubMed

    Cooke, Richard; Peel, Elizabeth; Shaw, Rachel L; Senior, Carl

    2007-02-01

    The aim of this study was to investigate participants' experiences of taking part in research conducted using fMRI or MEG procedures. Forty-four participants completed a questionnaire after taking part in either fMRI or MEG experiments; the questionnaire asked about experiences of and attitudes toward fMRI/MEG. Ten follow-up interviews were conducted to enable an in-depth analysis of these attitudes and experiences. The findings were generally positive: all participants thought fMRI and MEG were safe procedures, 93% would recommend participating in neuroimaging research to their friends and family, and participants were positive about participating in future neuroimaging research. However, some negative issues were identified. Some participants reported feeling nervous prior to scanning procedures, several participants reported side-effects after taking part, a number of participants were upset at being in a confined space and some participants did not feel confident about exiting the scanner in an emergency. Several recommendations for researchers are made, including a virtual tour of the scanning equipment during the consenting process in order to better prepare potential participants for the scanning experience and to minimize the potential psychological discomfort sometimes experienced in neuroimaging research. PMID:16806548

  3. Parents, adolescents, and consent for research participation.

    PubMed

    Iltis, Ana S

    2013-06-01

    Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as "mature" and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. PMID:23607974

  4. Using Exam Bonus Points as Incentive for Research Participation.

    ERIC Educational Resources Information Center

    Ferrari, Joseph R.; McGowan, Stephanie

    2002-01-01

    Examines the use of an incentive program for motivating students. Offers examination bonus points to students as an incentive to finish their required participation in department-wide research. Finds that the incentive program benefited teachers, students, and researchers. (CMK)

  5. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research

    PubMed Central

    Anderson, Nicholas; Bragg, Caleb; Hartzler, Andrea; Edwards, Kelly

    2014-01-01

    Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research. PMID:24772384

  6. Older adolescents’ views regarding participation in Facebook research

    PubMed Central

    Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

    2012-01-01

    Purpose Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting this research with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents’ responses after learning that they were participants in a research study that involved identification of participants using Facebook. Methods Public Facebook profiles of older adolescents age 18 to 19 years from a large state university were examined. Profile owners were then interviewed. During the interview participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. Results A total of 132 participants completed the interview (70% response rate), the average age was 18.4 years (SD=0.5) and our sample included 64 males (48.5%). Participant responses included: endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%) and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p=0.00). Conclusion The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many US courts. Researchers may consider these findings when developing research protocols involving Facebook. PMID:23084164

  7. Challenges and strategies for recruitment and retention of vulnerable research participants: promoting the benefits of participation.

    PubMed

    Gemmill, Robin; Williams, Anna Cathy; Cooke, Liz; Grant, Marcia

    2012-05-01

    The purpose of this article was to describe recruitment and retention of vulnerable hematopoietic cell transplant patients participating in a longitudinal intervention study. Utilizing Swanson's theory of caring model, nurse researchers facilitated patients' visualization of how study participation could enable them to share their experience and further clinical insights. PMID:20974092

  8. Challenging Assumptions About Minority Participation in US Clinical Research

    PubMed Central

    Kalbaugh, Corey A.

    2011-01-01

    Although extensive research addresses minorities’ low participation in clinical research, most focuses almost exclusively on therapeutic trials. The existing literature might mask important issues concerning minorities’ participation in clinical trials, and minorities might actually be overrepresented in phase I safety studies that require the participation of healthy volunteers. It is critical to consider the entire spectrum of clinical research when discussing the participation of disenfranchised groups; the literature on minorities’ distrust, poor access, and other barriers to trial participation needs reexamination. Minority participation in clinical trials is an important topic in public health discussions because this representation touches on issues of equality and the elimination of disparities, which are core values of the field. PMID:22021285

  9. Public participation processes related to nuclear research installations: what are the driving factors behind participation intention?

    PubMed

    Turcanu, Catrinel; Perko, Tanja; Laes, Erik

    2014-04-01

    This article addresses organised public participation processes related to installations for nuclear research. The aim was to determine predictors that could provide an empirical insight into the motivations underlying people's intended level of involvement. The results highlight attitude towards participation and moral norm as the strongest predictors for participation intention. Other significant predictors were time constraints, attitude towards nuclear energy, subjective and descriptive norms, and knowledge. An opposing relationship is noted between participation intention and attitude towards nuclear energy. At the same time, people who are more knowledgeable about the nuclear domain seem more willing to get involved. The analysis also revealed that financial benefits do not influence people's intended involvement in participation processes related to nuclear research installations. The results reported here are based on empirical data from a large-scale public opinion survey (N = 1020) carried out in Belgium during May-June 2011. PMID:23825284

  10. Research participation registers can increase opportunities for patients and the public to participate in health services research.

    PubMed

    Leach, Verity; Redwood, Sabi; Lasseter, Gemma; Walther, Axel; Reid, Colette; Blazeby, Jane; Martin, Richard; Donovan, Jenny

    2016-07-01

    Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles. PMID:26769574

  11. Informed consent among nursing students participating in biomedical research.

    PubMed

    Nambiar, Anupama; Christopher, D J; Mammen, Joy; David, Thambu; Kang, Gagandeep; David, Shirley

    2012-01-01

    For consent in biomedical research, it is essential that research participants understand the need for research, the study protocol, the risk and benefits of participation, the freedom to participate or decline and the right to leave the study at any time. A structured questionnaire was used to assess understanding and knowledge among nursing trainees participating in a cohort study investigating exposure and latent tuberculosis at a tertiary care hospital. Data were collected for 138 participants. While 97% were aware of their enrollment into a research protocol, only 78% could state that it was a study on tuberculosis. Approximately two-thirds were aware of plans for blood collection, but not all of them knew the timings or number of samples. The majority (59%) participants had consulted others before making the decision to participate, and only 73% felt that their participation was completely voluntary. Even among healthcare trainees, emphasis needs to be placed on testing both the knowledge and understanding of participants to ensure the principle and practice of truly informed consent. PMID:22864079

  12. Genomic Research and Wide Data Sharing: Views of Prospective Participants

    PubMed Central

    Trinidad, Susan Brown; Fullerton, Stephanie M.; Bares, Julie M.; Jarvik, Gail P.; Larson, Eric B.; Burke, Wylie

    2011-01-01

    Purpose Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. The present study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies (GWAS) and repository-based research. Methods Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18–34 years, 35–50, >50). Results Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, though they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Conclusions Trust is central in participants’ views regarding GWAS data sharing. Further research is needed to develop governance models that enact the values of stewardship. PMID:20535021

  13. The impact of participating in suicide research online.

    PubMed

    Gibson, Susanne; Boden, Zoe V R; Benson, Outi; Brand, Sarah L

    2014-08-01

    The impact of participation in online mixed-methods suicide research was investigated. Participants, who described feeling suicidal, completed an 18-item questionnaire before and after taking part (n = 103), and answered open-ended questions about participation (n = 97). Overall, participation reduced negative experiences and had no effect on positive experiences. Feelings of calm increased, but participants felt less supported. Some participants did experience distress, but some also reported this distress to be manageable. Anonymously sharing experiences of suicidality was viewed as important, had therapeutic benefits, and engendered hopes for recovery. The findings suggest a need to ensure vulnerable participants in online studies are well supported while protecting their anonymity. PMID:24527848

  14. Learning (and Researching) as Participation in Communities of Practice

    ERIC Educational Resources Information Center

    dos Santos, Madalena Pinto

    2004-01-01

    In my contribution to this panel I will bring elements from recent research I conducted (Santos, 2004) in Cape Verde aiming to clarify the meaning of learning as participation in social practices--"learning as participation in the social world" (Lave and Wenger, 1991, p. 42). But as my main interest is learning in compulsory education (in…

  15. Bioethical Issues in Providing Financial Incentives to Research Participants

    PubMed Central

    Resnik, David B.

    2015-01-01

    Offering research subjects financial incentives for their participation is a common practice that boosts recruitment but also raises ethical concerns, such as undue inducement, exploitation, and biased enrollment. This article reviews the arguments for providing participants with financial incentives, ethical concerns about payment, and approaches to establishing appropriate compensation levels. It also makes recommendations for investigators, institutions, and oversight committees. PMID:26807399

  16. Paternalism and Utilitarianism in Research with Human Participants

    PubMed Central

    Resnik, David B.

    2012-01-01

    In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account. PMID:23076346

  17. (Why) should we require consent to participation in research?

    PubMed Central

    Wertheimer, Alan

    2014-01-01

    It is widely accepted that informed consent is a requirement of ethical biomedical research. It is less clear why this is so. As an argumentative strategy the article asks whether it would be legitimate for the state to require people to participate in research. This article argues that the consent requirement cannot be defended by appeal to any simple principle, such as not treating people merely as a means, bodily integrity, and autonomy. As an argumentative strategy the article asks whether it would be legitimate for the state to require people to participate in research. I argue that while it would be legitimate and potentially justifiable to coerce people to participate in research as a matter of first-order moral principles, there are good reasons to adopt a general prohibition on coercive participation as a matter of second-order morality. PMID:25937932

  18. Participant Observation: A Promising Research Approach for Educational Technology

    ERIC Educational Resources Information Center

    Dodge, Martin; Bogdan, Robert

    1974-01-01

    Symbolic interaction is a useful perspective, a viable theoretical approach to getting at answers to many important questions related to educational technology. Participant observation is a useful methodology for rooting answers out of the research setting. (Author)

  19. Participation of immigrant women family caregivers in qualitative research.

    PubMed

    Neufeld, A; Harrison, M J; Hughes, K D; Spitzer, D; Stewart, M J

    2001-10-01

    The recruitment of articulate, expressive participants is an essential part of methodology in qualitative research. This article presents the authors' experience in the recruitment of immigrant women of Chinese and South Asian origin in an ethnographic study. The study included women caring for an adult or child family member who had a chronic health problem. Knowledge of women family caregivers' health is restricted by the failure to include diverse groups of women in research. In this article, the authors discuss issues related to recruitment and participation of immigrant women in research, including establishing access to diverse groups of women, benefits for immigrant women, and placing the researcher and research process on the same level. Practical research strategies to address these issues and engage the women in research that portrays their perspectives are presented. The authors' discussion concludes with reflection on their experience and that of other researchers. PMID:11569331

  20. Understanding informed consent for participation in international health research.

    PubMed

    Jegede, Ayodele S

    2009-08-01

    To participate in health research, there is a need for well-administered informed consent. Understanding of informed consent, especially in international health research, is influenced by the participants' understanding of information and the meaning attached to the information communicated to them regarding the purpose and procedure of the research. Incorrect information and the power differential between researcher and participants may lead to participants becoming victims of harmful research procedures. Meningitis epidemics in Kano in early 1996 led to a response from drug companies, especially Pfizer, as well as humanitarian workers from Médecins Sans Frontiers, which resulted in an unethical trial. Pfizer's drug trial during the epidemics has left a lasting controversy, which has yet to be resolved. This paper examines the key issues surrounding the controversy, discusses the context of informed decision-making, the ethical issues and implications of the incident, and concludes with some recommendations. Relevant texts, journals, Internet materials, newspaper articles and documentary materials on the conduct of the Pfizer's Trovan trial have been consulted. Four types of action (act intuitively, act rationally, act ignorantly, and act contextually - based on information provided) are identified as possible options for decision making. Participants most likely acted in ignorance due to poor understanding of the information contained in the verbal informed consent administered, thereby raising ethical issues. It is concluded that health research ethics committees have an important role to play nationally and locally in overseeing research, and in avoiding future occurrences. PMID:18637943

  1. Outdoor Recreation Participation and Environmental Concern: A Research Summary

    ERIC Educational Resources Information Center

    Berns, Gretchen Newhouse; Simpson, Steven

    2009-01-01

    Many experiential educators assume that participation in outdoor recreation creates an awareness and commitment to the environment through direct experience. This research summary looks to whether the research supports such an assumption. Specifically it reviews the key literature on this topic, examines the various classifications of outdoor…

  2. A Framework for Theory and Research on Adult Education Participation.

    ERIC Educational Resources Information Center

    Cookson, Peter S.

    1986-01-01

    Proposed is a comprehensive, multivariate, multirealm theoretical framework with which to integrate and advance the theory and research of adult education participation. This article describes elements of the framework that have already been investigated and those for which there are gaps in the literature. Suggestions for further research to…

  3. Interviewing Objects: Including Educational Technologies as Qualitative Research Participants

    ERIC Educational Resources Information Center

    Adams, Catherine A.; Thompson, Terrie Lynn

    2011-01-01

    This article argues the importance of including significant technologies-in-use as key qualitative research participants when studying today's digitally enhanced learning environments. We gather a set of eight heuristics to assist qualitative researchers in "interviewing" technologies-in-use (or other relevant objects), drawing on concrete…

  4. Children's Participation in Ethnographic Research: Issues of Power and Representation

    ERIC Educational Resources Information Center

    Christensen, Pia Haudrup

    2004-01-01

    The recognition of children's social agency and active participation in research has significantly changed children's position within the human and social sciences and led to a weakening of taken-for-granted assumptions found in more conventional approaches to child research. In order to hear the voices of children in the representation of their…

  5. Demand artifact: objectively detecting biased participants in advertising research.

    PubMed

    Miller, Felicia; Schertzer, Susan

    2014-12-01

    Detecting and reducing the effect of biased participants continues to be an important task for researchers. However, the lack of objective measures to assess demand artifact has made it difficult to effectively address this issue. This paper reports two experiments that apply a theory-based post-experimental inquiry that can systematically identify biased participants in consumer research. The results demonstrate how easily and effectively researchers can incorporate this tool into experimental studies of all types and reduce the likelihood of systematic error. PMID:25486509

  6. Research Participation Among Older Adults With Mobility Limitation

    PubMed Central

    Schlenk, Elizabeth A.; Ross, Diana; Stilley, Carol S.; Dunbar-Jacob, Jacqueline; Olshansky, Ellen

    2010-01-01

    The purpose of this qualitative descriptive study was to examine reasons for participation in clinical research among older adults with mobility limitation. A purposive sample of 20 men and 20 women aged 70 years or older was recruited. Data were collected by audiotaped telephone interviews using a semi-structured interview guide and transcribed verbatim. Participants expect privacy, professionalism by research staff, and respectful treatment. Benefits to protocol adherence include personal education, comparison of their health status with that of others, opportunity to maintain vitality, and altruism. Barriers to protocol adherence are apprehension, in particular a negative impact on their health care, randomization to the control group, and experimental drugs; and inconvenience. Factors promoting study completion are obligation, reciprocity, receipt of test results, health promotion, and socialization. Implications include meeting expectations, providing health education and study results to participants, reducing barriers to participation, and presenting opportunities for interaction with others. PMID:19692549

  7. Cross-cultural perspectives on research participation and informed consent.

    PubMed

    Barata, Paula C; Gucciardi, Enza; Ahmad, Farah; Stewart, Donna E

    2006-01-01

    This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research. PMID:16039028

  8. Potential research participants support the return of raw sequence data.

    PubMed

    Middleton, Anna; Wright, Caroline F; Morley, Katherine I; Bragin, Eugene; Firth, Helen V; Hurles, Matthew E; Parker, Michael

    2015-08-01

    Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this. PMID:25995218

  9. Potential research participants support the return of raw sequence data

    PubMed Central

    Middleton, Anna; Wright, Caroline F; Morley, Katherine I; Bragin, Eugene; Firth, Helen V; Hurles, Matthew E; Parker, Michael

    2015-01-01

    Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this. PMID:25995218

  10. Worker participation in occupational health research: theory and practice.

    PubMed

    Mergler, D

    1987-01-01

    In the area of occupational health, progressive scientists in many countries are attempting to carry out scientific inquiry into the effects of working conditions on the health of workers in a participatory relationship with workers. The author proposes an action research model to describe the underlying research process, taking into account the interests of both workers and academics. For worker/scientist cooperation to be effective, means must be found for the two groups to work on an equal footing. Workers' participation in occupational health research projects takes two forms: informational input-workers' knowledge of working conditions and health problems systematized and used to better understand the work situation and its effects on health and well-being; and partnership--workers' participation in the design and realization of all stages of the research project. Institutional context and worker participation are analyzed in the present article in the light of the experiences of our research group, Group de Recherche-action en Biologie de Travail (Action Research on Work Biology), at the Université du Québec à Montréal. The group has been involved in action research with unions for the past ten years under the terms of a signed agreement between the University and the two major Québec unions, the Féderation des travailleurs (travailleuses) du Québec and the Conféderation des syndicats nationaux. PMID:3557770

  11. Men's Reactions to Participating in Interpersonal Violence Research

    ERIC Educational Resources Information Center

    Edwards, Katie M.; Gidycz, Christine A.; Desai, Angeli D.

    2012-01-01

    This study assessed college men's reactions immediately following and 2 months after completing self-report measures of interpersonal violence. Results showed that 4.3% of men experienced immediate negative emotional reactions. Greater immediate negative reactions were related to personal benefits to research participation, anticipation of future…

  12. Service Learning and Participant Observation: Undergraduate Field Research.

    ERIC Educational Resources Information Center

    White, Timothy J.

    2000-01-01

    Compares the service learning experience of college students to the traditional social science technique of participant observation. Suggests that service learning allows students to test theories through personal observation in a service setting and experience the logic and practice of social research. Uses examples from the Xavier University…

  13. Who's Playing College Sports? Trends in Participation. Research Series

    ERIC Educational Resources Information Center

    Cheslock, John

    2007-01-01

    This study provides the most accurate and comprehensive examination of participation trends to date. We analyze data from almost every higher education institution in the country and utilize data and methods that are free of the shortcomings present in previous research on this subject. A 10-year NCAA sample containing 738 NCAA colleges and…

  14. Increasing global participation in genetics research through DNA barcoding.

    PubMed

    Adamowicz, Sarah J; Steinke, Dirk

    2015-12-01

    DNA barcoding--the sequencing of short, standardized DNA regions for specimen identification and species discovery--has promised to facilitate rapid access to biodiversity knowledge by diverse users. Here, we advance our opinion that increased global participation in genetics research is beneficial, both to scientists and for science, and explore the premise that DNA barcoding can help to democratize participation in genetics research. We examine publication patterns (2003-2014) in the DNA barcoding literature and compare trends with those in the broader, related domain of genomics. While genomics is the older and much larger field, the number of nations contributing to the published literature is similar between disciplines. Meanwhile, DNA barcoding exhibits a higher pace of growth in the number of publications as well as greater evenness among nations in their proportional contribution to total authorships. This exploration revealed DNA barcoding to be a highly international discipline, with growing participation by researchers in especially biodiverse nations. We briefly consider several of the challenges that may hinder further participation in genetics research, including access to training and molecular facilities as well as policy relating to the movement of genetic resources. PMID:26642251

  15. A "Sense of Place" in Public Participation in Scientific Research

    ERIC Educational Resources Information Center

    Haywood, Benjamin K.

    2014-01-01

    Public participation in scientific research (PPSR) within the natural sciences has been demonstrated as an effective strategy to expand cognitive knowledge and understanding of ecology, with implications regarding individual perspectives, attitudes, and behaviors about the environment and feelings about the personal relevance of science. Yet the…

  16. The Participant Observer as "Insider": Researching Your Own Classroom.

    ERIC Educational Resources Information Center

    Herrmann, Andrea W.

    Ethnography is increasingly appealing to those who want to study their own literate society and their own discourse communities. As sensitivity to the role of context in the social construction of knowledge increases, ethnography is viewed as a particularly relevant approach for research in schools and classrooms. The participant observer, who is…

  17. Research Participant-Centered Outcomes at NIH-Supported Clinical Research Centers

    PubMed Central

    Kost, Rhonda G.; Lee, Laura N.; Yessis, Jennifer M.; Wesley, Robert; Alfano, Sandra; Alexander, Steven R.; Kassis, Sylvia Baedorf; Cola, Phil; Dozier, Ann; Ford, Dan E.; Harris, Paul; Kim, Emmelyn; Lee, Simon Craddock; O’Riordan, Gerri; Roth, Mary-Tara; Schuff, Kathryn; Wasser, June; Henderson, David K.; Coller, Barry S.

    2014-01-01

    Background Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants’ experiences. To address this, we developed and deployed a survey at 15 NIH-supported clinical research centers to assess participant-centered outcomes; we report responses from 4,961 participants. Methods Survey questions addressed core aspects of the research participants’ experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses. Results Respondents broadly represented the research population in sex, race, and ethnicity. Seventy-three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team (R2=0.80 - 0.96). White participants trusted researchers (88%) than did non-white participants collectively (80%) (p<0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%). Conclusions Our survey demonstrates that a majority of participants at NIH-supported clinical research centers rate their research experience very positively and that participant-centered outcome measures identify actionable items for improvement of participant’s experiences, research protections, and the conduct of clinical investigation. PMID:24842076

  18. Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations

    PubMed Central

    Page, Kimberly

    2012-01-01

    We examined the historical and regulatory framework of research with human participants in the United States, and described some possible unintended consequences of this framework in the context of paying young injection drug users for their time participating in behavioral and medical research. We drew upon our own experiences while conducting a long-running epidemiological study of hepatitis C virus infection. We found that existing ethical and regulatory framings of research participation may lead to injustices from the perspectives of research participants. We propose considering research participation as a specialized form of work and the use of community advisory boards to facilitate discussion about appropriate compensation for research participation among economically marginalized populations. PMID:22594754

  19. The participation of minorities in published pediatric research.

    PubMed Central

    Kelly, Michael L.; Ackerman, Paul D.; Ross, Lainie Friedman

    2005-01-01

    OBJECTIVES: There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents. DESIGN: All full-length articles published in three general pediatric journals between July 2002 through June 2003 were collected and reviewed. Articles were excluded if they did not include at least one U.S. researcher, all subjects enrolled at U.S. institutions, parents or children as subjects, some prospective data collection, or between eight and 10,000 subjects. Corresponding authors were surveyed to clarify race/ethnicity data, language barriers and how race/ethnicity data were collected. RESULTS: Two-hundred-twenty-eight articles qualified for further analysis. Black children and parents and Asian/Pacific Islander parents were overrepresented, and Hispanic children and parents were underrepresented compared to the Census data. Most researchers collected race/ethnicity data by having subjects self-report. Most studies did not have translation available, although most Hispanic and Asian/Pacific Islander subjects were enrolled in studies in which translation was available. CONCLUSION: Our data show that Hispanic and Asian/Pacific Islander research subjects are more likely to participate in pediatric research when translation is available. If the goal is to ensure access to pediatric research for all ethnic populations, then more research needs to accommodate non-English-speaking participants. PMID:16035575

  20. BDNF and COX-2 participate in anti-depressive mechanisms of catalpol in rats undergoing chronic unpredictable mild stress.

    PubMed

    Wang, Jun-Ming; Yang, Lian-He; Zhang, Yue-Yue; Niu, Chun-Ling; Cui, Ying; Feng, Wei-Sheng; Wang, Gui-Fang

    2015-11-01

    Catalpol, a major compound in Rehmannia glutinosa with both medicinal and nutritional values, has been previously confirmed to shorten the duration of immobility in mice exposed to tail suspension and forced swimming tests. This study attempted to examine the anti-depressive mechanisms of catalpol in rats undergoing chronic unpredictable mild stress (CUMS) by involving brain-derived neurotrophic factor (BDNF) and cyclooxygenase-2 (COX-2). CUMS-exposed rats were given catalpol daily (5, 10, and 20mg/kg, ig) or a reference drug, fluoxetine hydrochloride (FH, 10mg/kg, ig), at 5 weeks after starting the CUMS procedure. Sucrose preference test was performed to observe depression-like behavior, and serum and brain tissues were used for neurochemical and fluorescent quantitative reverse transcription PCR analysis. CUMS induced depression-like behavior, whereas catalpol and FH administration attenuated this symptom. Moreover, CUMS caused excessively elevated levels of serum corticosterone, an index of hypothalamic-pituitary-adrenal (HPA) axis hyperactivation, in a manner attenuated by catalpol and FH administration. Catalpol administration also further decreased BDNF activities, downregulated the mRNA expression of BDNF and tropomyosin-related kinase B (TrkB), and reversed the excessive elevation in the activities and mRNA expression levels of COX-2 and prostaglandin E2 (PGE2) in the hippocampus and frontal cortex of rats undergoing CUMS. Results indicate that catalpol can ameliorate CUMS-induced depression-like behavior, and suggest its mechanisms may partially be ascribed to restoring HPA axis dysfunctions, upregulating BDNF expression and its cognate receptor TrkB, and downregulating COX-2 expression, thereby reducing PGE2 levels in the brain. PMID:26255123

  1. Research participation effects: a skeleton in the methodological cupboard☆

    PubMed Central

    McCambridge, Jim; Kypri, Kypros; Elbourne, Diana

    2014-01-01

    Objective There have been concerns about impacts of various aspects of taking part in research studies for a century. The concerns have not, however, been sufficiently well conceptualized to form traditions of study capable of defining and elaborating the nature of these problems. In this article we present a new way of thinking about a set of issues attracting long-standing attention. Study Design and Setting We briefly review existing concepts and empirical work on well-known biases in surveys and cohort studies and propose that they are connected. Results We offer the construct of “research participation effects” (RPE) as a vehicle for advancing multi-disciplinary understanding of biases. Empirical studies are needed to identify conditions in which RPE may be sufficiently large to warrant modifications of study design, analytic methods, or interpretation. We consider the value of adopting a more participant-centred view of the research process as a way of thinking about these issues, which may also have benefits in relation to research methodology more broadly. Conclusion Researchers may too readily overlook the extent to which research studies are unusual contexts, and that people may react in unexpected ways to what we invite them to do, introducing a range of biases. PMID:24766858

  2. Toolkit for evaluating impacts of public participation in scientific research

    NASA Astrophysics Data System (ADS)

    Bonney, R.; Phillips, T.

    2011-12-01

    The Toolkit for Evaluating Impacts of Public Participation in Scientific Research is being developed to meet a major need in the field of visitor studies: To provide project developers and other professionals, especially those with limited knowledge or understanding of evaluation techniques, with a systematic method for assessing project impact that facilitates longitudinal and cross-project comparisons. The need for the toolkit was first identified at the Citizen Science workshop held at the Cornell Lab of Ornithology in 2007 (McEver et al. 2007) and reaffirmed by a CAISE inquiry group that produced the recent report: "Public Participation in Scientific Research: Defining the Field and Assessing its Potential for Informal Science Education" (Bonney et al. 2009). This presentation will introduce the Toolkit, show how it is intended to be used, and describe ways that project directors can use their programmatic goals and use toolkit materials to outline a plan for evaluating the impacts of their project.

  3. Sampling: how to select participants in my research study?*

    PubMed Central

    Martínez-Mesa, Jeovany; González-Chica, David Alejandro; Duquia, Rodrigo Pereira; Bonamigo, Renan Rangel; Bastos, João Luiz

    2016-01-01

    Background In this paper, the basic elements related to the selection of participants for a health research are discussed. Sample representativeness, sample frame, types of sampling, as well as the impact that non-respondents may have on results of a study are described. The whole discussion is supported by practical examples to facilitate the reader's understanding. Objective To introduce readers to issues related to sampling. PMID:27438200

  4. Informed consent for research participation in frail older persons.

    PubMed

    Barron, Jeremy S; Duffey, Patricia L; Byrd, Linda Jo; Campbell, Robin; Ferrucci, Luigi

    2004-02-01

    Informed consent has been the most scrutinized and controversial aspect of clinical research ethics. Institutional review boards (IRBs), government regulatory agencies, and the threat of litigation have all contributed to increasingly detailed consent documents that hope to ensure that subjects are not misled or coerced. Unfortunately, the growing regulatory burden on researchers has not succeeded in protecting subjects, but has rather made the consent process less effective and has discouraged research on vulnerable populations. As a matter of fact, investigators and ethicists continue to identify failures of the consenting process, particularly concerning participation in research of older individuals. The challenges involved in ensuring appropriate consent from the elderly include physical frailty, reduced autonomy and privacy, and impaired decision-making capacity due to dementia, delirium, or other neuropsychiatric illnesses. Ageism among investigators also contributes to failure of informed consent. The evaluation and continuing re-evaluation of an individual's decision-making capacity is critical but difficult. In the most extreme cases, the older adult's ability to participate in the consent process is clearly impaired. However, in many instances, the decision-making capacity is only partially impaired but declines during the course of a research project. Implementing methods of effective communication may enable many frail elderly individuals to make informed decisions. Special challenges are posed by research on end-of-life care, which typically involves frail, older subjects who are uniquely vulnerable, and research is conducted in institutional settings where subtle violations of autonomy are routine. Clearly, the frail elderly represent a vulnerable population that deserves special attention when developing and evaluating an informed consent process. Two important ethical conflicts should be kept in mind. First, although vulnerable older patients must

  5. Electronic Protocol for Suicide Risk Management in Research Participants

    PubMed Central

    Belnap, Bea Herbeck; Schulberg, Herbert C.; He, Fanyin; Mazumdar, Sati; Reynolds, Charles F.; Rollman, Bruce L.

    2015-01-01

    Objective To describe an electronic, telephone-delivered, suicide risk management protocol (SRMP) that is designed to guide research staff and safely triage study participants who are at risk for self-harm. Methods We tested the SRMP in the context of the NIH-funded randomized clinical trial “Bypassing the Blues” in which 302 patients who had undergone coronary artery bypass graft surgery (CABG) were screened for depression and assessed by telephone 2-weeks following hospital discharge and at 2-, 4-, and 8-month follow-up. We programmed the SRMP to assign different risk levels based on patients' answers from none to imminent with action items for research staff keyed to each of them. We describe frequency of suicidal ideation, SRMP use, and completion of specific steps in the SRMP management process over the 8-month follow-up period. Results Suicidal ideation was expressed by 74 (25%) of the 302 study participants in 139 (13%) of the 1,069 blinded telephone assessments performed by research staff. The SRMP was launched in 103 (10%) of assessments, and the suicidal risk level was classified as moderate or high in 10 (1%) of these assessments, thereby necessitating an immediate evaluation by a study psychiatrist. However, no hospitalizations, emergency room visits, or deaths ascribed to suicidal ideation were discovered during the study period. Conclusion The SRMP was successful in systematically and safely guiding research staff lacking specialty mental health training through the standardized risk assessment and triage of research participants at risk for self-harm. PMID:25592159

  6. Sense and readability: participant information sheets for research studies

    PubMed Central

    Ennis, Liam; Wykes, Til

    2016-01-01

    Background Informed consent in research is partly achieved through the use of information sheets. There is a perception however that these information sheets are long and complex. The recommended reading level for patient information is grade 6, or 11–12 years old. Aims To investigate whether the readability of participant information sheets has changed over time, whether particular study characteristics are related to poorer readability and whether readability and other study characteristics are related to successful study recruitment. Method We obtained 522 information sheets from the UK National Institute for Health Research Clinical Research Network: Mental Health portfolio database and study principal investigators. Readability was assessed with the Flesch reading index and the Grade level test. Results Information sheets increased in length over the study period. The mean grade level across all information sheets was 9.8, or 15–16 years old. A high level of patient involvement was associated with more recruitment success and studies involving pharmaceutical or device interventions were the least successful. The complexity of information sheets had little bearing on successful recruitment. Conclusions Information sheets are far more complex than the recommended reading level of grade 6 for patient information. The disparity may be exacerbated by an increasing focus on legal content. Researchers would benefit from clear guidance from ethics committees on writing succinctly and accessibly and how to balance the competing legal issues with the ability of participants to understand what a study entails. PMID:26382948

  7. Worldwide Research, Worldwide Participation: Web-Based Test Logger

    NASA Technical Reports Server (NTRS)

    Clark, David A.

    1998-01-01

    Thanks to the World Wide Web, a new paradigm has been born. ESCORT (steady state data system) facilities can now be configured to use a Web-based test logger, enabling worldwide participation in tests. NASA Lewis Research Center's new Web-based test logger for ESCORT automatically writes selected test and facility parameters to a browser and allows researchers to insert comments. All data can be viewed in real time via Internet connections, so anyone with a Web browser and the correct URL (universal resource locator, or Web address) can interactively participate. As the test proceeds and ESCORT data are taken, Web browsers connected to the logger are updated automatically. The use of this logger has demonstrated several benefits. First, researchers are free from manual data entry and are able to focus more on the tests. Second, research logs can be printed in report format immediately after (or during) a test. And finally, all test information is readily available to an international public.

  8. Patient participation in health research: research with and for people with spinal cord injuries.

    PubMed

    Abma, Tineke A

    2005-12-01

    Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research. PMID:16263914

  9. Aacap 2001 Research Forum: Challenges and Recommendations regarding Recruitment and Retention of Participants in Research Investigations

    ERIC Educational Resources Information Center

    Hinshaw, Stephen P.; Hoagwood, Kimberly; Jensen, Peter S.; Kratochvil, Christopher; Bickman, Leonard; Clarke, Greg; Abikoff, Howard B.; Atkins, Marc; Vitiello, Benedetto

    2004-01-01

    Objective: Clinical research depends on the participation of representative samples. At the 2001 Annual Meeting of the American Academy of Child and Adolescent Psychiatry, the Workgroup on Research conducted a research forum with the purpose of improving recruitment and retention of children and adolescents in research protocols. Method: An…

  10. Network of participants in European research: accepted versus rejected proposals

    NASA Astrophysics Data System (ADS)

    Tsouchnika, Maria; Argyrakis, Panos

    2014-12-01

    We investigate the network formed by the collaboration of researchers seeking funding by the European Commission by submitting research proposals. Institutions are network nodes and collaborations are links between the nodes. We constructed one network for the accepted proposals and one for the rejected ones, in order to look for any structural differences between them. To this end, first, we compare the size of the largest connected components and the resulting degree distributions. The latter show notable difference only in the region of relatively small degrees. We calculate the assortative mixing by participant type, i.e. a property which indicates whether the participant is a university/research institute, a company (non-profit included), or undefined. By aggregating the data of both networks into three geographical scales (city, region, country), we compare the degree assortativity and average node weight, in all scales. With respect to these two features the networks display similar behaviour. Finally, we compare a series of centrality measures and the Minimum Spanning Trees, at the country scale, to assess the relative performance of the countries. We find that five countries, France, Germany, the United Kingdom, Spain and Italy, play a central role in both networks, however, their relative significance is not the same.

  11. Reflexivity: The Creation of Liminal Spaces-Researchers, Participants, and Research Encounters.

    PubMed

    Enosh, Guy; Ben-Ari, Adital

    2016-03-01

    Reflexivity is defined as the constant movement between being in the phenomenon and stepping outside of it. In this article, we specify three foci of reflexivity-the researcher, the participant, and the encounter-for exploring the interview process as a dialogic liminal space of mutual reflection between researcher and participant. Whereas researchers' reflexivity has been discussed extensively in the professional discourse, participants' reflexivity has not received adequate scholarly attention, nor has the promise inherent in reflective processes occurring within the encounter. PMID:25987582

  12. Ethical Case Study of the Researcher-Participant Relationship in End-of-Life Research.

    PubMed

    Olsen, Douglas P; Lehto, Rebecca H; Chan, Roxane Raffin

    2016-09-01

    Nurse-researchers studying interventions for patients at the end-of-life may become close with participants due to the nature of interactions within the research protocol. In such studies, participants may request further interactions that would constitute clinical care beyond the scope of the protocol. Nurse-researchers may feel a conflict of values between their obligation to the research goals and their inclinations and obligations as nurses to care for their patients. Nurse-researchers in this situation aspire to honor the bonds developed through close contact and ensure participants receive standard of care while maintaining standards of research ethics. Analysis of a case and review of applicable concepts in research ethics, including ethical relationships, therapeutic misconception, equipoise, and population vulnerability, are used to develop recommendations regarding the decision parameters for similar cases. PMID:27006191

  13. Widening Participation to Doctoral Education and Research Degrees: A Research Agenda for an Emerging Policy Issue

    ERIC Educational Resources Information Center

    McCulloch, Alistair; Thomas, Liz

    2013-01-01

    Widening participation is on the political agenda but, to date, policy, practice and research has focused on undergraduate education. This article identifies an emerging widening participation focus on doctoral education. Using England as a case study, the article examines this development within the context of the long-standing concern with…

  14. Attitudes, Beliefs, and Norms of Adult Research Participants as a Basis for Outreach Education Programming

    ERIC Educational Resources Information Center

    Lyons, Joanna

    2013-01-01

    Millions of adults volunteer as research participants annually at research institutions across the nation. This research explored the attitudes, beliefs, and norms of rurally situated, adult research participants at a large research university. This systematic exploration of research participant experiences gathered information to inform the…

  15. Distraction techniques for children undergoing procedures: a critical review of pediatric research.

    PubMed

    Koller, Donna; Goldman, Ran D

    2012-12-01

    Pediatric patients are often subjected to procedures that can cause pain and anxiety. Although pharmacologic interventions can be used, distraction is a simple and effective technique that directs children's attention away from noxious stimuli. However, there is a multitude of techniques and technologies associated with distraction. Given the range of distraction techniques, the purpose of this article was to provide a critical assessment of the evidence-based literature that can inform clinical practice and future research. Recommendations include greater attention to child preferences and temperament as a means of optimizing outcomes and heightening awareness around child participation in health care decision making. PMID:21925588

  16. Predictors of Seizure Outcomes in Children with Tuberous Sclerosis Complex and Intractable Epilepsy Undergoing Resective Epilepsy Surgery: An Individual Participant Data Meta-Analysis

    PubMed Central

    Fallah, Aria; Guyatt, Gordon H.; Snead, O. Carter; Ebrahim, Shanil; Ibrahim, George M.; Mansouri, Alireza; Reddy, Deven; Walter, Stephen D.; Kulkarni, Abhaya V.; Bhandari, Mohit; Banfield, Laura; Bhatnagar, Neera; Liang, Shuli; Teutonico, Federica; Liao, Jianxiang; Rutka, James T.

    2013-01-01

    Objective To perform a systematic review and individual participant data meta-analysis to identify preoperative factors associated with a good seizure outcome in children with Tuberous Sclerosis Complex undergoing resective epilepsy surgery. Data Sources Electronic databases (MEDLINE, EMBASE, CINAHL and Web of Science), archives of major epilepsy and neurosurgery meetings, and bibliographies of relevant articles, with no language or date restrictions. Study Selection We included case-control or cohort studies of consecutive participants undergoing resective epilepsy surgery that reported seizure outcomes. We performed title and abstract and full text screening independently and in duplicate. We resolved disagreements through discussion. Data Extraction One author performed data extraction which was verified by a second author using predefined data fields including study quality assessment using a risk of bias instrument we developed. We recorded all preoperative factors that may plausibly predict seizure outcomes. Data Synthesis To identify predictors of a good seizure outcome (i.e. Engel Class I or II) we used logistic regression adjusting for length of follow-up for each preoperative variable. Results Of 9863 citations, 20 articles reporting on 181 participants were eligible. Good seizure outcomes were observed in 126 (69%) participants (Engel Class I: 102(56%); Engel class II: 24(13%)). In univariable analyses, absence of generalized seizure semiology (OR = 3.1, 95%CI = 1.2–8.2, p = 0.022), no or mild developmental delay (OR = 7.3, 95%CI = 2.1–24.7, p = 0.001), unifocal ictal scalp electroencephalographic (EEG) abnormality (OR = 3.2, 95%CI = 1.4–7.6, p = 0.008) and EEG/Magnetic resonance imaging concordance (OR = 4.9, 95%CI = 1.8–13.5, p = 0.002) were associated with a good postoperative seizure outcome. Conclusions Small retrospective cohort studies are inherently prone to bias, some of which are overcome

  17. Retaining Participants in Outpatient and Community-Based Health Studies: Researchers and Participants in Their Own Words

    PubMed Central

    Odierna, Donna H.; Bero, Lisa A.

    2014-01-01

    Loss to follow-up can introduce bias into research, making it difficult to develop inclusive evidence-based health policies and practice guidelines. We aimed to deepen understanding of reasons why participants leave or remain in longitudinal health studies. We interviewed 59 researchers and current and former research participants in six focus groups (n = 55) or interviews (n = 4) at three study centers in a large academic research institution. We used minimally structured interview guides and inductive thematic analysis to explore participant-level, study-level, and contextual participation barriers and facilitators. Four main themes emerged: transportation, incentives and motivation, caregiver concerns, and the social and physical environment. Themes shared crosscutting issues involving funding, flexibility, and relationships between researchers and research participants. Study-level and contextual factors appear to interact with participant characteristics, particularly socioeconomic status and disease severity to affect participant retention. Participants’ characteristics do not seem to be the main cause of study dropout. Researchers and funders might be able to address contextual and study factors in ways that reduce barriers to participation. PMID:25599003

  18. What is a meaningful result? Disclosing the results of genomic research in autism to research participants

    PubMed Central

    Miller, Fiona Alice; Hayeems, Robin Zoe; Bytautas, Jessica Peace

    2010-01-01

    Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether – and which results – to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results ‘reportable' when results were perceived to explain cause, and answer the question ‘why;' that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.' Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true' depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.' For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders. PMID:20234389

  19. Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation

    PubMed Central

    Farr, Deeonna E.; Brandt, Heather M.; Comer, Kimberly D.; Jackson, Dawnyéa D.; Pandya, Kinjal; Friedman, Daniela B.; Ureda, John R.; Williams, Deloris G.; Scott, Dolores B.; Green, Wanda; Hébert, James R.

    2014-01-01

    Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes towards research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities. PMID:25385692

  20. Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation.

    PubMed

    Farr, Deeonna E; Brandt, Heather M; Comer, Kimberly D; Jackson, Dawnyéa D; Pandya, Kinjal; Friedman, Daniela B; Ureda, John R; Williams, Deloris G; Scott, Dolores B; Green, Wanda; Hébert, James R

    2015-09-01

    Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes toward research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities. PMID:25385692

  1. The LBNL High School Student Research Participation Program (HSSRPP)

    NASA Astrophysics Data System (ADS)

    McMahan, M. A.

    2007-04-01

    The HSSRPP, which has been in operation at LBNL since 2001, places 25-35 students each year in summer research internships at Lawrence Berkeley National Laboratory, a multi-purpose Department of Energy laboratory. The paid six-week internships, which are restricted to students who have completed their junior or senior year of high school, are highly sought over, with nearly 300 applications in 2006. With funding from Bechtel, the success of the program has been assessed through surveys and tracking of the student participants. In addition, as part of the application process, the students are asked the essay question, ``If you were in charge of the Science Department at your High School, what changes would you make to motivate more students to pursue careers in science and why?'' The responses of all applicants for 2004-2006 have been analyzed by gender and school district. The results will be discussed.

  2. Interview and recollection-based research with child disaster survivors: Participation-related changes in emotion and perceptions of participation.

    PubMed

    Hambrick, Erin P; O'Connor, Bridget M; Vernberg, Eric M

    2016-03-01

    Research suggests that some types of trauma research can be conducted safely with children ages 10 and older. The aim of this project was to learn more about potential risks or benefits of conducting research with younger children and with child disaster survivors, specifically about research that includes children providing trauma recollections. Fifty 8- to 12-year-old children who experienced a devastating tornado participated in an in-person interview that included both individual and joint (mother-child) recollections of their tornado experiences 1 year after exposure. These 50 children also rated 3 emotions at 3 time points and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys 3 months later to assess persistent participation-related emotions and perceptions. Child reported that emotions worsened from pre- to during participation; however, reports of emotions returned to preparticipation levels post-participation and remained so at the 3-month follow-up. Sixty-four percent of children reported at least some participation benefit and no participation regret immediately postparticipation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) postparticipation, and 0% 3 months later. No children requested to stop participating, and none required postresearch connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Results indicate that carefully planned and executed disaster-related research that includes children providing recollections can be conducted with preadolescents with little risk and some benefit. PMID:26390107

  3. Moving beyond Utilitarian Perspectives of Infant Participation in Participatory Research: Film-Mediated Research Encounters

    ERIC Educational Resources Information Center

    Elwick, Sheena; Sumsion, Jennifer

    2013-01-01

    Drawing on Thomas, Whybrow and Scharber's four participatory perspectives, this paper describes and complicates endeavours to move beyond utilitarian perspectives of infant participation in participatory research. It proposes that film-mediated encounters between researchers and infants have the potential to be more than sites that privilege…

  4. Re-Examining the Nature of Researcher-Participant Relationships in Qualitative Research.

    ERIC Educational Resources Information Center

    Busier, Holly-Lynn; Pigeon, Yvette

    A qualitative research conversation needs to include a critical examination of a study's relational dimension. Excerpts are presented from two doctoral dissertations that discuss the nature of the researcher-participant relationships formed through the studies. The first dissertation, "Beyond the Yellow Brick Road: Educational Portraits of…

  5. Impact of Open Data Policies on Consent to Participate in Human Subjects Research: Discrepancies between Participant Action and Reported Concerns.

    PubMed

    Cummings, Jorden A; Zagrodney, Jessica M; Day, T Eugene

    2015-01-01

    Research outlets are increasingly adopting open data policies as a requisite for publication, including studies with human subjects data. We investigated whether open data policies influence participants' rate of consent by randomly assigning participants to view consent forms with and without discussion of open data policies. No participants declined to participate, regardless of condition, nor did rates of drop-out vs. completion vary between conditions. Furthermore, no significant change in potential consent rates was reported when participants were openly asked about the influence of open data policies on their likelihood of consent. However, follow-up analyses indicated possible poor attention to consent forms, consistent with previous research. Moreover, thematic analysis of participants' considerations of open data policy indicated multiple considerations such as concerns regarding confidentiality, anonymity, data security, and study sensitivity. The impact of open data policies on participation raises complex issues at the intersection of ethics and scientific innovation. We conclude by encouraging researchers to consider participants as stakeholders in open data policy and by providing recommendations for open data policies in human subjects research. PMID:25993308

  6. Research Participation versus Classroom Lecture: A Comparison of Student Learning

    ERIC Educational Resources Information Center

    Elliott, Lisa Jo; Rice, Stephen; Trafimow, David; Madson, Laura; Hipshur, Malisa F.

    2010-01-01

    Previous literature has focused on students' perceptions of participation in experiments, but has not measured the effect of participation on learning. In Study 1, students rated their perceptions of learning about psychology; they compared the classroom experience to experiment participation, reading about psychology, or summarizing a journal…

  7. Research led by participants: a new social contract for a new kind of research.

    PubMed

    Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey P; Ladher, Navjoyt; Montgomery, Jonathan; O'Connor, Daniel; O'Neill, Onora; Richards, Martin P; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John

    2016-04-01

    In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish. PMID:25825527

  8. Research led by participants: a new social contract for a new kind of research

    PubMed Central

    Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey P; Ladher, Navjoyt; O'Connor, Daniel; O'Neill, Onora; Richards, Martin P; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John

    2016-01-01

    In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish. PMID:25825527

  9. Ethical issues in neuroimaging health research: an IPA study with research participants.

    PubMed

    Shaw, Rachel L; Senior, Carl; Peel, Elizabeth; Cooke, Richard; Donnelly, Louise S

    2008-11-01

    Neuroimaging is increasingly used to understand conditions like stroke and epilepsy. However, there is growing recognition that neuroimaging can raise ethical issues. We used interpretative phenomenological analysis to analyse interview data pre-and post-scan to explore these ethical issues. Findings show participants can become anxious prior to scanning and the protocol for managing incidental findings is unclear. Participants lacked a frame of reference to contextualize their expectations and often drew on medical narratives. Recommendations to reduce anxiety include dialogue between researcher and participant to clarify understanding during consent and the use of a ;virtual tour' of the neuroimaging experience. PMID:18987078

  10. Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

    PubMed

    Petersen, Gloria M; Van Ness, Brian

    2015-01-01

    Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families. PMID:26479561

  11. Female survivors of child sexual abuse: finding voice through research participation.

    PubMed

    McClain, Natalie; Amar, Angela Frederick

    2013-07-01

    It is unclear whether survivors of trauma are at risk of emotional or psychological distress when they participate in research because there is little data on the subjective experience of research study participants and how they make meaning from their participation in research. This qualitative descriptive study explored the experience of research participation by survivors of childhood sexual abuse. We interviewed 12 female survivors and identified themes. Participants noted both positive personal and societal benefits of study participation and reported no harm due to their research participation. Study findings can help researchers understand the perspectives of participants regarding the benefits of taking part in violence research and can help allay concerns over causing participants undue psychological distress. PMID:23875549

  12. Females' participation in psychopharmacology research as authors, editors, and subjects.

    PubMed

    Poling, Alan; Durgin, Amy; Bradley, Kelly P; Porter, Lindsay K; Van Wagner, Karen; Weeden, Marc; Panos, John J

    2009-04-01

    This study determined the involvement of women as first authors and other authors for every article published in Experimental and Clinical Psychopharmacology, Pharmacology Biochemistry and Behavior, and Psychopharmacology in 1991, 1996, 2001, and 2006. Their involvement as editors also was determined. Women's participation as authors, but not as editors, slightly increased over time. In 2006, 43% of first authors, 38% of other authors, and 24% of editors were women. The gender of subjects was examined for the same years and journals, but could not be determined for 6% and 9% of articles employing nonhuman and human subjects, respectively. In 2006, when subjects' gender could be determined, 77% of articles involving nonhuman subjects used only males, 9% only females, and 14% both males and females. In articles using human subjects in that same year, 17% involved only males, 6% only females, and 77% both males and females. Women researchers clearly make substantial contributions to the psychopharmacology literature, but are nonetheless underrepresented as editors. Findings regarding subjects indicate that there is growing recognition of the importance of gender as a determinant of drug effects, although the vast majority of nonhuman studies continue to involve only male subjects. PMID:19331487

  13. Research in general practice: a survey of incentives and disincentives for research participation.

    PubMed

    Brodaty, Henry; Gibson, Louisa Hr; Waine, Melissa L; Shell, Allan M; Lilian, Ruth; Pond, Constance Dimity

    2013-09-01

    Background Recruitment rates of general practitioners (GPs) to do research vary widely. This may be related to the ability of a study to incorporate incentives for GPs and minimise barriers to participation. Method A convenience sample of 30 GPs, ten each from the Sydney intervention and control groups Ageing in General Practice 'Detection and Management of Dementia' project (GP project) and 10 GPs who had refused participation, were recruited to determine incentives and barriers to participating in research. GPs completed the 11-item 'Meeting the challenges of research in general practice: general practitioner questionnaire' (GP survey) between months 15 and 24 of the GP project, and received brief qualitative interviews from a research GP to clarify responses where possible. Results The most important incentives the 30 GPs gave for participating in the project were a desire to update knowledge (endorsed by 70%), to help patients (70%), and altruism (60%). Lack of time (43%) was the main barrier. GPs also commented on excessive paperwork and an inadequate explanation of research. Conclusions While a desire to update knowledge and help patients as well as altruism were incentives, time burden was the primary barrier and was likely related to extensive paperwork. Future recruitment may be improved by minimising time burden, making studies simpler with online data entry, offering remuneration and using a GP recruiter. PMID:24427184

  14. Increasing the Efficiency of Data Collection with a Research Participation Night

    ERIC Educational Resources Information Center

    Kilb, Angela; Herzig, Kathleen

    2016-01-01

    Data collection can be a frustrating experience for student researchers due to difficulty in scheduling appointments with participants. To increase the efficiency of research project data collection, we organized a Research Participation Night in which volunteers were incentivized to participate in as many experiments as time allowed. By offering…

  15. Impact of Open Data Policies on Consent to Participate in Human Subjects Research: Discrepancies between Participant Action and Reported Concerns

    PubMed Central

    2015-01-01

    Research outlets are increasingly adopting open data policies as a requisite for publication, including studies with human subjects data. We investigated whether open data policies influence participants’ rate of consent by randomly assigning participants to view consent forms with and without discussion of open data policies. No participants declined to participate, regardless of condition, nor did rates of drop-out vs. completion vary between conditions. Furthermore, no significant change in potential consent rates was reported when participants were openly asked about the influence of open data policies on their likelihood of consent. However, follow-up analyses indicated possible poor attention to consent forms, consistent with previous research. Moreover, thematic analysis of participants’ considerations of open data policy indicated multiple considerations such as concerns regarding confidentiality, anonymity, data security, and study sensitivity. The impact of open data policies on participation raises complex issues at the intersection of ethics and scientific innovation. We conclude by encouraging researchers to consider participants as stakeholders in open data policy and by providing recommendations for open data policies in human subjects research. PMID:25993308

  16. Becoming Researchers: The Participation of Undergraduate and Graduate Students in Scientific Research Groups

    ERIC Educational Resources Information Center

    Feldman, Allan; Divoll, Kent A.; Rogan-Klyve, Allyson

    2013-01-01

    This study sought to understand how graduate and undergraduate students learn to do science by participating in research groups. A phenomenological approach was used to illuminate the experiences of the students. The results provide evidence that the students were in the role of apprentices, although this was not made explicit. As apprentices they…

  17. Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

    PubMed

    Wolf, Susan M; Branum, Rebecca; Koenig, Barbara A; Petersen, Gloria M; Berry, Susan A; Beskow, Laura M; Daly, Mary B; Fernandez, Conrad V; Green, Robert C; LeRoy, Bonnie S; Lindor, Noralane M; O'Rourke, P Pearl; Breitkopf, Carmen Radecki; Rothstein, Mark A; Van Ness, Brian; Wilfond, Benjamin S

    2015-01-01

    Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death. PMID:26479555

  18. Understanding motivations to participate in an observational research study: Why do patients enroll?

    PubMed

    Soule, Michael C; Beale, Eleanor E; Suarez, Laura; Beach, Scott R; Mastromauro, Carol A; Celano, Christopher M; Moore, Shannon V; Huffman, Jeff C

    2016-01-01

    By understanding common motivations for participating in observational research studies, clinicians may better understand the perceived benefits of research participation from their clients' perspective. We enrolled 164 cardiac patients in a study about the effects of gratitude and optimism. Two weeks post-enrollment, participants completed a four-item questionnaire regarding motivations for study enrollment. Altruistic motivation ranked highest, while intellectual, health-related, and financial motivations rated lower. Four subgroups of participants emerged, each with distinct characteristics and different priorities for participating. These findings may help front-line clinicians to understand which motivations for participation apply to their clients who enroll in non-treatment-based research projects. PMID:26933943

  19. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders.

    PubMed

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-05-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant's values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants. PMID:26810436

  20. Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT

    ERIC Educational Resources Information Center

    Turk, Vicky; Leer, Geoffrey; Burchell, Sarah; Khattram, Sukhjinder; Corney, Roslyn; Rowlands, Gill

    2012-01-01

    Background: This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as…

  1. Developing Research-Ready Skills: Preparing Early Academic Students for Participation in Research Experiences

    NASA Astrophysics Data System (ADS)

    Charlevoix, D. J.; Morris, A. R.

    2015-12-01

    Engaging lower-division undergraduates in research experiences is a key but challenging aspect of guiding talented students into the geoscience research pipeline. UNAVCO conducted a summer internship program to prepare first and second year college students for participation in authentic, scientific research. Many students in their first two years of academic studies do not have the science content knowledge or sufficient math skills to conduct independent research. Students from groups historically underrepresented in the geosciences may face additional challenges in that they often have a less robust support structure to help them navigate the university environment and may be less aware of professional opportunities in the geosciences.UNAVCO, manager of NSF's geodetic facility, hosted four students during summer 2015 internship experience aimed to help them develop skills that will prepare them for research internships and skills that will help them advance professionally. Students spent eight weeks working with UNAVCO technical staff learning how to use equipment, prepare instrumentation for field campaigns, among other technical skills. Interns also participated in a suite of professional development activities including communications workshops, skills seminars, career circles, geology-focused field trips, and informal interactions with research interns and graduate student interns at UNAVCO. This presentation will outline the successes and challenges of engaging students early in their academic careers and outline the unique role such experiences can have in students' academic careers.

  2. The Effect of Participating in Suicide Research: Does Participating in a Research Protocol on Suicide and Psychiatric Symptoms Increase Suicide Ideation and Attempts?

    PubMed Central

    Smith, Phillip N.; Poindexter, Erin K.; Cukrowicz, Kelly C.

    2016-01-01

    The current study explored the effect of engaging in an intensive research protocol that inquired extensively about psychiatric and suicide symptoms and exposed participants to a number of images that included suicide-related content. Individuals experiencing a Major Depressive Episode were called at one and three months after the initial protocol. Participants were asked about changes in suicide ideation and the occurrence of self-harm or suicide attempts following participation. Participants reported experiencing reductions in suicide ideation at the first follow-up and no changes at the second follow-up. No participant reported having engaged in self-harm or attempting suicide at either follow-up. Results suggest that basic science/non-treatment research can be conducted safely with suicidal participants and in a manner that does not increase suicide symptoms or suicide risk. PMID:21198322

  3. Accountability to Research Participants: Unresolved Dilemmas and Unravelling Ethics

    ERIC Educational Resources Information Center

    Levinson, Martin P.

    2010-01-01

    Drawing on findings from an ethnographic study of Romani Gypsy groups in England (1996-2000), along with data from follow-up work involving original and additional participants (2005-ongoing), this paper explores several ethical issues that arose. It traces developing relationships across a 13-year period, identifying the problems of attempting to…

  4. Potential Factors Influencing Indigenous Education Participation and Achievement. Research Report

    ERIC Educational Resources Information Center

    Biddle, Nicholas; Cameron, Timothy

    2012-01-01

    This report examines two sets of issues, the first being whether Indigenous Australians obtain a lower return on investment in education and training than other Australians. If they do, then this would partly explain why, in general, Indigenous participation in education and training is relatively low. The second issue is whether Indigenous…

  5. Participating in Alzheimer's Research: Why Placebos Are Important

    MedlinePlus

    ... Division of Geriatrics and Clinical Gerontology Division of Neuroscience FAQs Funding Opportunities Intramural Research Program Office of ... called a “double-blind, placebo-controlled” clinical trial. Learning from Research Findings Test and placebo groups are ...

  6. Children as Researchers in Primary Schools: Choice, Voice and Participation

    ERIC Educational Resources Information Center

    Bucknall, Sue

    2012-01-01

    "Children as Researchers in Primary Schools" is an innovative and unique resource for practitioners supporting children to become "real world" researchers in the primary classroom. It will supply you with the skills and ideas you need to implement a "children as researchers" framework in your school that can be adapted for different ages and…

  7. Engaging Children: Research Issues around Participation and Environmental Learning

    ERIC Educational Resources Information Center

    Hacking, Elisabeth Barratt; Barratt, Robert; Scott, William

    2007-01-01

    In this article we explore a number of issues arising from the papers in this special issue of "Environmental Education Research." The papers focus on current examples of childhood environment research in the UK together with research reviews from the UK, the US and Australia. In order to provide a framework for considering and contextualizing…

  8. The Effect of Participating in Suicide Research: Does Participating in a Research Protocol on Suicide and Psychiatric Symptoms Increase Suicide Ideation and Attempts?

    ERIC Educational Resources Information Center

    Smith, Phillip; Poindexter, Erin; Cukrowicz, Kelly

    2010-01-01

    The effect of engaging in an intensive research protocol that inquired extensively about psychiatric and suicide symptoms and exposed participants to a number of images, including suicide-related content was explored. Individuals experiencing a major depressive episode were called at 1 and 3 months after the initial protocol. Participants were…

  9. Community-Engaged Strategies to Increase Diversity of Participants in Health Education Research.

    PubMed

    Khubchandani, Jagdish; Balls-Berry, Joyce; Price, James H; Webb, Fern J

    2016-05-01

    Minorities have historically been underrepresented in health-related research. Several strategies have been recommended to increase the participation of minorities in health-related research. However, most of the recommendations and guidelines apply to research in clinical or laboratory contexts. One of the more prominent methods to enhance minority participation in health-related research that has recently come to the fore is the use of community-engaged strategies. The purpose of this article is to summarize community-engaged outreach efforts that can be translated into useable strategies for health education research teams seeking to diversify the pool of research participants. Also, we provide a succinct overview of the various components of a research endeavor that may influence minority participation in health-related research. Finally, we analyze how health education specialists and SOPHE (Society of Public Health Education) can play a leading role in helping enhance minority participation in health-related research. PMID:27091602

  10. Young Children's Decisions about Research Participation: Opting out

    ERIC Educational Resources Information Center

    Dockett, Sue; Einarsdottir, Johanna; Perry, Bob

    2012-01-01

    Participatory approaches to engaging in research with young children place a great deal of emphasis on children's rights to choose whether or not they wish to be involved. A number of recent studies have reported a range of strategies both to inform children of their research rights and to establish options for checking children's understanding of…

  11. Ethical Issues Affecting Human Participants in Community College Research

    ERIC Educational Resources Information Center

    Wurtz, Keith

    2011-01-01

    The increasing demand of constituents to conduct analyses in order to help inform the decision-making process has led to the need for Institutional Research (IR) guidelines for community college educators. One method of maintaining the quality of research conducted by IR staff is to include professional development about ethics. This article…

  12. Triangulation, Respondent Validation, and Democratic Participation in Mixed Methods Research

    ERIC Educational Resources Information Center

    Torrance, Harry

    2012-01-01

    Over the past 10 years or so the "Field" of "Mixed Methods Research" (MMR) has increasingly been exerting itself as something separate, novel, and significant, with some advocates claiming paradigmatic status. Triangulation is an important component of mixed methods designs. Triangulation has its origins in attempts to validate research findings…

  13. NCVER Building Researcher Capacity Scholarship: A Rural Participant's Perspective

    ERIC Educational Resources Information Center

    Bowden, Anne

    2015-01-01

    This article uses an autoethnographic methodology to describe the experience of a novice practitioner-researcher engaging in the NCVER community of practice (CoP). The author's experience of the journey from vocational education and training (VET) practitioner to practitioner-researcher is recorded. The findings show that the numerous aspirations…

  14. Recruiting Ethnically Diverse Participants into Qualitative Health Research: Lessons Learned

    ERIC Educational Resources Information Center

    Renert, Hagar; Russell-Mayhew, Shelly; Arthur, Nancy

    2013-01-01

    The inclusion of ethnically diverse populations in health research is crucial for addressing ethnic disparities in health status and care. Despite this need, non-dominant ethnic groups continue to be under-represented in health studies. The reasons may be at least partly due to the difficulties inherent in recruiting such groups for research. In…

  15. Does Every Student Have a Voice? Critical Action Research on Equitable Classroom Participation Practices

    ERIC Educational Resources Information Center

    Mack, Lindsay

    2012-01-01

    This article explores the design and implementation of critical action research undertaken to encourage equal classroom participation. Building on a body of literature on critical action research and oral participation, the author reports her research project undertaken in a multi-lingual and multi-ethnic class in Japan to examine practices of how…

  16. Gatekeepers of Science: Attitudes toward the Research Participation of Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    McDonald, Katherine E.; Keys, Christopher B.; Henry, David B.

    2008-01-01

    Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in…

  17. U.S. Department of Energy student research participation programs. Underrepresented minorities in U.S. Department of Energy student research participation programs

    SciTech Connect

    1996-03-01

    The purpose of this study was to identify those particular aspects of US Department of Energy (DOE) research participation programs for undergraduate and graduate students that are most associated with attracting and benefiting underrepresented minority students and encouraging them to pursue careers in science, engineering, and technology. A survey of selected former underrepresented minority participants, focus group analysis, and critical incident analysis serve as the data sources for this report. Data collected from underrepresented minority participants indicate that concerns expressed and suggestions made for conducting student research programs at DOE contractor facilities are not remarkably different from those made by all participants involved in such student research participation programs. With the exception of specific suggestions regarding recruitment, the findings summarized in this report can be interpreted to apply to all student research participants in DOE national laboratories. Clearly defined assignments, a close mentor-student association, good communication, and an opportunity to interact with other participants and staff are those characteristics that enhance any educational program and have positive impacts on career development.

  18. New research on women's low participation in science and technology

    NASA Astrophysics Data System (ADS)

    Stout, Jane

    It is well known that women have historically been and continue to be grossly underrepresented in technical fields (i.e., the physical sciences, engineering, and computing). This presentation will address the following research questions: What dissuades women from entering into a technical career track, and what are women's experiences like within technical fields? At the same time, this presentation will acknowledge a shortcoming of decades of social science research and interventions designed to improve women's interest and persistence in technical fields: a narrow definition of ``women''. Given that the majority of women in colleges and universities (i.e., the typical sites of social science research) tend to be affluent and/or White, STEM education research that relies on convenience samples at colleges and universities paints a skewed picture of gender issues in technical fields. This presentation will showcase research findings that call into question conventional conceptions of gender disparities in technical fields. Specifically, the presentation will emphasize the importance of recognizing that women constitute more than their gender; women come from a diverse array of backgrounds, which no doubt play a role in the experience of being a woman in technical fields. By understanding the experiences of women from a broad array of demographics groups, the STEM education community can develop a corresponding set of strategies to recruit and retain women with diverse interests, experiences, and values (e.g., first generation versus second college students; women of different racial/ethnic backgrounds). The aim of this presentation is to promote social science research and interventions that acknowledge the nuanced experiences of diverse women in technical fields, in order to address the seemingly intractable problem of women's underrepresentation in technical fields. NSF DUE-1431112, NSF CNS-1246649.

  19. A Research-Based Approach to Participation Assessment: Evolving beyond Problems to Possibilities

    ERIC Educational Resources Information Center

    Flaherty, Joan; Choi, H. S. Chris; Johan, Novie

    2008-01-01

    This research study, undertaken across a department, presents the results of two focus groups in which twenty undergraduate students offer their views on participation assessment and its underlying goal of student engagement. Barriers to fairly assessing participation are discussed along with their solutions. Assessing participation, though, isn't…

  20. A Conceptual Framework and Proposed Taxonomy for Social Policy Research on Participation in Adult Education.

    ERIC Educational Resources Information Center

    Quigley, B. Allan

    Although a considerable body of research has been developed in recent years on participation in adult education, little has been done from the standpoint of social policy and its impact on participation. To assist investigation of this aspect of participation, three social policy models are presented: market models, progressive-liberal-welfare…

  1. In need of remedy: US policy for compensating injured research participants.

    PubMed

    Pike, Elizabeth R

    2014-03-01

    There is an emerging ethical consensus that injured research participants should receive medical care and compensation for their research-related injuries. This consensus is premised on notions of beneficence, distributive justice, compensatory justice and reciprocity. In response, countries around the world have implemented no-fault compensation systems to ensure that research participants are adequately protected in the event of injury. The United States, the world's leading sponsor of research, has chosen instead to rely on its legal system to provide injured research participants with medical care and compensation. This article argues that US reliance on its legal system leaves injured research participants unprotected in the event of injury. Nearly every injured research participant will have difficulty receiving compensation in court, and certain classes of research participants will be barred from receiving compensation altogether. The United States' outlier status also threatens to impede US-sponsored multinational research, potentially delaying important biomedical advances. To rectify this injustice, researchers, Institutional Review Boards, sponsors and research institutions should advocate systematic no-fault compensation in the United States to bring US law into accord with global ethical norms and ensure that injured research participants are adequately protected. PMID:23572565

  2. Participant Observation, Anthropology Methodology and Design Anthropology Research Inquiry

    ERIC Educational Resources Information Center

    Gunn, Wendy; Løgstrup, Louise B.

    2014-01-01

    Within the design studio, and across multiple field sites, the authors compare involvement of research tools and materials during collaborative processes of designing. Their aim is to trace temporal dimensions (shifts/ movements) of where and when learning takes place along different sites of practice. They do so by combining participant…

  3. The Generalizability of a Participant Registry for Minority Health Research

    ERIC Educational Resources Information Center

    Lichtenberg, Peter A.

    2011-01-01

    Purpose: Effective strategies to recruit minority elders into health research (e.g., through churches, partnering with community gatekeepers) often involve nonrandom sampling methods. The current study has two aims: (a) to examine some new practices in recruitment of African American elders and (b) to determine the similarities and differences of…

  4. Teaming from Three Perspectives: Interviews with Participatory Action Research Participants

    ERIC Educational Resources Information Center

    Cain, Judith

    2008-01-01

    Taking part in the autism spectrum disorder participatory action research (ASD PAR) project was a genuine team effort for the group of people supporting Rose, a primary school student with Asperger syndrome. The following excerpts are from interviews with some of Rose's team. This is a collaborative approach to telling the story of the team's…

  5. Developing Graduate Attributes through Participation in Undergraduate Research Conferences

    ERIC Educational Resources Information Center

    Hill, Jennifer; Walkington, Helen

    2016-01-01

    Graduate attributes are a framework of skills, attitudes, values and knowledge that graduates should develop by the end of their degree programmes. Adopting a largely qualitative approach and using semi-structured interviews, this paper outlines students' experiences at a national undergraduate research conference over three years and evidences…

  6. Listening to Children's Voices: Children as Participants in Research

    ERIC Educational Resources Information Center

    McTavish, Marianne; Streelasky, Jodi; Coles, Linda

    2012-01-01

    Recently, researchers have begun to investigate the ways contemporary childhoods are being shaped by a range of multimodal communicative practices (Kress, "Literacy in the new media age," Routledge, New York, 2003; Lankshear and Knobel, "New literacies: Changing knowledge and classroom learning," Open University Press, Milton Keynes, 2003). This…

  7. Multimodality and Children's Participation in Classrooms: Instances of Research

    ERIC Educational Resources Information Center

    Newfield, Denise

    2011-01-01

    This paper describes how language and literacy classrooms became more participatory, agentive spaces through addressing a central issue in teaching and learning: the forms of representation through which children make their meanings. It reconsiders pedagogic research in under-resourced Gauteng classrooms during the period 1994-2005, during the…

  8. Participant views on consent in cancer genetics research: preparing for the precision medicine era.

    PubMed

    Edwards, Karen L; Korngiebel, Diane M; Pfeifer, Lesley; Goodman, Deborah; Renz, Anne; Wenzel, Lari; Bowen, Deborah J; Condit, Celeste M

    2016-04-01

    The Precision Medicine Initiative (PMI) has created considerable discussions about research participant issues including re-consent and how and when to incorporate the patient experience into clinical trials. Within the changing landscape of genetic and genomic research, the preferences of participants are lacking yet are needed to inform policy. With the growing use of biobanks intended to support studies, including the national research cohort proposed under the PMI, understanding participant preferences, including re-consent, is a pressing concern. The Participant Issues Project (PIP) addresses this gap, and here we present data on participant attitudes regarding re-consent and broad consent in research studies. PIP study participants came from the Northwest Cancer Genetics Registry and included cancer patients, relatives, and controls. Thirty telephone interviews were conducted and analyzed using content and thematic analysis. Results indicate that in some scenarios, re-consent is needed. Most participants agreed that re-consent was necessary when the study direction changed significantly or a child participant became an adult, but not if the genetic variant changed. Most participants' willingness to participate in research would not be affected if the researcher or institution profited or if a broad consent form were used. Participants emphasized re-consent to provide information and control of the use of their data, now relevant for tailored treatment, while also prioritizing research as important. In the era of precision medicine, it is essential that policy makers consider participant preferences with regard to use of their materials and that participants understand genetic and genomic research and its harms and benefits as well as what broad consent entails, including privacy and re-identification risks. PMID:26801345

  9. ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

    PubMed Central

    2014-01-01

    Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELSI 2.0’ initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries. PMID:24944586

  10. ELSI practices in genomic research in East Asia: implications for research collaboration and public participation.

    PubMed

    Yoshizawa, Go; Ho, Calvin Wai-Loon; Zhu, Wei; Hu, Chingli; Syukriani, Yoni; Lee, Ilhak; Kim, Hannah; Tsai, Daniel Fu Chang; Minari, Jusaku; Kato, Kazuto

    2014-01-01

    Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the 'ELSI 2.0' initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries. PMID:24944586

  11. Incentives for research participation: policy and practice from Canadian corrections.

    PubMed

    Matheson, Flora I; Forrester, Pamela; Brazil, Amanda; Doherty, Sherri; Affleck, Lindy

    2012-08-01

    We explored current policies and practices on the use of incentives in research involving adult offenders under correctional supervision in prison and in the community (probation and parole) in Canada. We contacted the correctional departments of each of the Canadian provinces and territories, as well as the federal government department responsible for offenders serving sentences of two years or more. Findings indicated that two departments had formal policy whereas others had unwritten practices, some prohibiting their use and others allowing incentives on a case-by-case basis. Given the differences across jurisdictions, it would be valuable to examine how current incentive policies and practices are implemented to inform national best practices on incentives for offender-based research. PMID:22698018

  12. Broadening Participation in the Geosciences through Participatory Research

    NASA Astrophysics Data System (ADS)

    Pandya, R. E.; Hodgson, A.; Wagner, R.; Bennett, B.

    2009-12-01

    In spite of many efforts, the geosciences remain less diverse than the overall population of the United States and even other sciences. This lack of diversity threatens the quality of the science, the long-term viability of our workforce, and the ability to leverage scientific insight in service of societal needs. Drawing on new research into diversity specific to geosciences, this talk will explore underlying causes for the lack of diversity in the atmospheric and related sciences. Causes include the few geoscience majors available at institutions with large minority enrollment; a historic association of the geosciences with extractive industries which are negatively perceived by many minority communities, and the perception that science offers less opportunity for service than other fields. This presentation suggests a new approach - community-based participatory research (CBPR). In CBPR, which was first applied in the field of rural development and has been used for many years in biomedical fields, scientists and community leaders work together to design a research agenda that simultaneously advances basic understanding and addresses community priorities. Good CBPR integrates research, education and capacity-building. A CBRP approach to geoscience can address the perceived lack of relevance and may start to ameliorate a history of negative experiences of geosciences. Since CBPR works best when it is community-initiated, it can provide an ideal place for Minority-Serving Institutions to launch their own locally-relevant programs in the geosciences. The presentation will conclude by describing three new examples of CBPR. The first is NCAR’s partnerships to explore climate change and its impact on Tribal lands. The second approach a Denver-area listening conference that will identify and articulate climate-change related priorities in the rapidly-growing Denver-area Latino community. Finally, we will describe a Google-funded project that brings together

  13. Research participation by older adults at end of life: barriers and solutions.

    PubMed

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2009-07-01

    The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life. PMID:20078006

  14. Recruiting Healthy Volunteers for Research Participation via Internet Advertising

    PubMed Central

    Bramstedt, Katrina A.

    2007-01-01

    Objective: The Internet is frequently used as a tool to recruit research subjects, and the US Food and Drug Administration (FDA) provides general guidance regarding such advertising. The goal of this study was to explore the incidence and nature of ethically inappropriate recruiting advertisements on the Internet and to provide descriptive guidance to researchers for responsible Internet recruiting. Methods: In this study, 119 advertisements recruiting health volunteers and listed on the CenterWatch Clinical Trials Listing Service website were reviewed for content as well as text style and visual effects. Results: The majority of advertisements satisfied FDA guidance. However, 21 (18%) were ethically troubling with regard to font size, font style, and/or verbiage. In many advertisements, it was unclear if “medication” meant “investigational drug,” “over-the-counter medication” or US FDA approved “prescription medication.” Nearly 30% of the 119 advertisements used the terms “free,” “no charge” or “no cost” as lures. Conclusion: Ethically problematic recruiting advertisements can be coercive and misleading. Descriptive guidance provided in this paper can help clinical researchers create ethically appropriate recruiting advertisements. PMID:17607043

  15. Risks of alcohol consumption in laboratory studies involving human research participants.

    PubMed

    Wood, M D; Sher, K J

    2000-12-01

    Research protocols that include alcohol consumption raise a number of critical issues with regard to potential risks to research participants, researchers, and institutions. This article seeks to highlight some of these issues by presenting some of the potential risks and discussing relevant dimensions and parameters of these risks. Risks to individual research participants are the primary focus of concern, but consideration of risks associated with aspects of the experimental, contextual, and institutional setting are also considered. The authors conclude with recommendations for individuals conducting studies involving alcohol consumption by human research participants. PMID:11130151

  16. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 2 2011-04-01 2011-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  17. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 2 2014-04-01 2014-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  18. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 2 2014-04-01 2014-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  19. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 2 2011-04-01 2011-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  20. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 2 2012-04-01 2012-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  1. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 2 2012-04-01 2012-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  2. College Student Intentions to Participate in Internet-Based Health Research

    ERIC Educational Resources Information Center

    Reece, Michael; Smith, Matthew Lee; Jun, Mi Kyung

    2006-01-01

    To explore factors associated with college students' intentions to participate in Internet-based health research, data were collected from 502 undergraduate students enrolled in introductory-level business courses at a large midwestern university. Findings suggest that intentions to participate in Internet-based research are influenced by one's…

  3. Survey Study Investigating the Significance of Conference Participation to Undergraduate Research Students

    ERIC Educational Resources Information Center

    Mabrouk, Patricia Ann

    2009-01-01

    This article summarizes the findings of a survey study of undergraduate research (UR) students presenting their research at the fall 2007 and fall 2008 American Chemical Society (ACS) National Meetings. The purpose of the study is to probe the perceived benefits of conference participation to UR students. Results suggest that participation in…

  4. A Mixed Methods Study of Participant Reaction to Domestic Violence Research in Jordan

    ERIC Educational Resources Information Center

    Clark, Cari Jo; Shahrouri, Manal; Halasa, Louma; Khalaf, Inaam; Spencer, Rachael; Everson-Rose, Susan

    2012-01-01

    Research on domestic violence against women has increased considerably over the past few decades. Most participants in such studies find the exercise worthwhile and of greater benefit than emotional cost; however, systematic examination of participant reaction to research on violence is considerably lacking, especially in the Middle East region.…

  5. College Women's Reactions to Sexual Assault Research Participation: Is It Distressing?

    ERIC Educational Resources Information Center

    Edwards, Katie M.; Kearns, Megan C.; Calhoun, Karen S.; Gidycz, Christine A.

    2009-01-01

    This study assessed college women's reactions to participating in sexual assault research. Women with sexual victimization histories reported more negative emotional reactions than nonvictimized women, but also greater benefits. Benefits to research participation outweighed costs for both women with and without sexual victimization histories.…

  6. Action Research to Encourage Pupils' Active Participation in the Sustainable School

    ERIC Educational Resources Information Center

    Katsenou, Christina; Flogaitis, Evgenia; Liarakou, Georgia

    2015-01-01

    This article aims to explore the contribution of action research to the development of active participation of pupils in the context of the sustainable school. Action research is looked at not simply as a methodological tool for the exploration of participation, but as a key element of the educational actions that promote the active participation…

  7. An Investigation Of Students With Mild Learning Disabilities Reactions To Participating In Sexuality Research

    ERIC Educational Resources Information Center

    Thomas, Gail; Kroese, Biza Stenfert

    2005-01-01

    This study investigates 35 students with mild learning disabilities reactions to participating in a research project exploring their sexual knowledge, attitudes and behaviour. Students completed an informed consent procedure prior to their participation in the sexuality research and all were interviewed using a confidential interview procedure.…

  8. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  9. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  10. Prisoners as research participants: current practice and attitudes in the UK.

    PubMed

    Charles, Anna; Rid, Annette; Davies, Hugh; Draper, Heather

    2016-04-01

    The use of prisoners as research participants is controversial. Efforts to protect them in response to past exploitation and abuse have led to strict regulations and reluctance to involve them as participants. Hence, prisoners are routinely denied the opportunity to participate in research. In the absence of comprehensive information regarding prisoners' current involvement in research, we examined UK prisoners' involvement through review of research applications to the UK National Research Ethics Service. We found that prisoners have extremely limited access to research participation. This analysis was augmented by a survey of those involved in research and research governance (UK researchers and Research Ethics Committee members). Our results suggest that pragmatic concerns regarding the perceived burden of including prisoners are far more prominent in motivating their exclusion than ethical concerns or knowledge of regulations. While prisoners may remain a vulnerable research population due to constraints upon their liberty and autonomy and the coercive nature of the prison environment, routine exclusion from participation may be disadvantageous. Rigorous ethical oversight and the shift in the prevailing attitude towards the risks and benefits of participation suggest that it may be time for research to be more accessible to prisoners in line with the principle of equivalence in prison healthcare. We suggest the necessary first step in this process is a re-examination of current guidance in the UK and other countries with exclusions. PMID:24958334

  11. ‘What Do I Know? Should I Participate?’ Considerations on Participation in HIV Related Research among HIV Infected Adults in Bangalore, South India

    PubMed Central

    Rodrigues, Rashmi J.; Antony, Jimmy; Krishnamurthy, Shubha; Shet, Anita; De Costa, Ayesha

    2013-01-01

    Background India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. Methodology/Principal Findings This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%), said that research meant ‘to discover something new’ and 138(80%) were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (p<0.0015). Individual health benefits and altruism were the primary motives for participation in research and indicate the presence of therapeutic misconception. Women were less likely to make autonomous decisions for participation in interventional studies. Conclusions/Significance Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on enabling potential

  12. Factors Associated with Past Research Participation Among Low-Income Persons Living with HIV

    PubMed Central

    Kypriotakis, Georgios; Atkinson, John; Diamond, Pamela M.; Williams, Mark L.; Vidrine, Damon J.; Andrade, Roberto; Arduino, Roberto

    2012-01-01

    Abstract We described influences on past research participation among low-income persons living with HIV (PLWH) and examined whether such influences differed by study type. We analyzed a convenience sample of individuals from a large, urban clinic specializing in treating low-income PLWH. Using a computer-assisted survey, we elicited perceptions of research and participating in research, barriers, benefits, “trigger” influences, and self-efficacy in participating in research. Of 193 participants, we excluded 14 who did not identify any type of study participation, and 17 who identified “other” as study type, resulting in 162 cases for analysis. We compared results among four groups (i.e., 6 comparisons): past medical participants (n=36, 22%), past behavioral participants (n=49, 30%), individuals with no past research participation (n=52, 32%), and persons who had participated in both medical and behavioral studies (n=25, 15%). Data were analyzed using chi-square tests for categorical variables and ANOVA for continuous variables. We employed a multinomial probit (MNP) model to examine the association of multiple factors with the outcome. Confidence in ability to keep appointments, and worry about being a ‘guinea pig’ showed statistical differences in bivariate analyses. The MNP regression analysis showed differences between and across all 6 comparison groups. Fewer differences were seen across groupings of medical participants, behavioral participants, and those with no past research experience, than in comparisons with the medical-behavioral group. In the MNP regression model ‘age’ and level of certainty regarding ‘keeping yourself from being a guinea pig’ showed significant differences between past medical participants and past behavioral participants. PMID:22686261

  13. Factors associated with past research participation among low-income persons living with HIV.

    PubMed

    Slomka, Jacquelyn; Kypriotakis, Georgios; Atkinson, John; Diamond, Pamela M; Williams, Mark L; Vidrine, Damon J; Andrade, Roberto; Arduino, Roberto

    2012-08-01

    We described influences on past research participation among low-income persons living with HIV (PLWH) and examined whether such influences differed by study type. We analyzed a convenience sample of individuals from a large, urban clinic specializing in treating low-income PLWH. Using a computer-assisted survey, we elicited perceptions of research and participating in research, barriers, benefits, "trigger" influences, and self-efficacy in participating in research. Of 193 participants, we excluded 14 who did not identify any type of study participation, and 17 who identified "other" as study type, resulting in 162 cases for analysis. We compared results among four groups (i.e., 6 comparisons): past medical participants (n=36, 22%), past behavioral participants (n=49, 30%), individuals with no past research participation (n=52, 32%), and persons who had participated in both medical and behavioral studies (n=25, 15%). Data were analyzed using chi-square tests for categorical variables and ANOVA for continuous variables. We employed a multinomial probit (MNP) model to examine the association of multiple factors with the outcome. Confidence in ability to keep appointments, and worry about being a 'guinea pig' showed statistical differences in bivariate analyses. The MNP regression analysis showed differences between and across all 6 comparison groups. Fewer differences were seen across groupings of medical participants, behavioral participants, and those with no past research experience, than in comparisons with the medical-behavioral group. In the MNP regression model 'age' and level of certainty regarding 'keeping yourself from being a guinea pig' showed significant differences between past medical participants and past behavioral participants. PMID:22686261

  14. Understanding the role of gender in body image research settings: participant gender preferences for researchers and co-participants in interviews, focus groups and interventions.

    PubMed

    Yager, Zali; Diedrichs, Phillippa C; Drummond, Murray

    2013-09-01

    Participant gender preferences for body image researchers, interventionists and focus group and intervention co-participants have been largely ignored, despite recognition that such characteristics can influence the nature and quality of data collected and intervention effects. To address this, Australian women (n=505) and men (n=220) completed a questionnaire about their preferences for interviewers and focus group facilitators, for teachers delivering school-based interventions, and for co-participants in these settings. Women predominantly preferred female interviewers and teachers, and mixed-sex co-participants, but most had no preference for focus group facilitators. Body dissatisfied women were more likely to prefer female researchers and single-sex co-participants. Most men did not have specific preferences, however, body dissatisfied men were more likely to report a gender preference for interviewers and teachers. Professional capabilities, personal qualities and appearance were regarded as important researcher characteristics. These findings have important implications for body image research, particularly among high-risk groups. PMID:23876877

  15. Factors associated with willingness to participate in biospecimen research among Chinese Americans.

    PubMed

    Gao, Wanzhen; Ma, Grace X; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-04-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  16. Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

    PubMed Central

    Gao, Wanzhen; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-01-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  17. Toward understanding in postmodern interview analysis: interpreting the contradictory remarks of a research participant.

    PubMed

    Power, Elaine M

    2004-07-01

    How is the qualitative research analyst to understand apparently contradictory remarks made by a research participant? Although social scientists in the positivist tradition rely on methods such as triangulation to find "truth," interpretive social scientists listen beyond, between, and underneath participants' words to understand the social conditions that produce apparent contradictions in their accounts. In this article, the author presents a case study of making sense of a research participant's contradictory comments, using a theoretical framework to understand the participant's "logic of practice." Through interpretive listening and reflexivity during the data analysis, she came to understand the participant's contradictory remarks in a way that illuminated the contradictions, as well as a significant process in the participant's life at the time: the transformation from carefree daughter to responsible mother. Such an interpretive analysis does not produce "truth" as positivist social scientists require but offers instead the satisfaction of understanding. PMID:15200804

  18. Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

    PubMed

    Hanson, Bridget L; Faulkner, Sherilyn A; Brems, Christiane; Corey, Staci L; Eldridge, Gloria D; Johnson, Mark E

    2015-10-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. PMID:26283681

  19. Implementation of a Research Participant Satisfaction Survey at an Academic Medical Center

    PubMed Central

    Smailes, Paula; Reider, Carson; Hallarn, Rose Kegler; Hafer, Lisa; Wallace, Lorraine; Miser, William F.

    2016-01-01

    This descriptive case study covers the development of a survey to assess research subject satisfaction among those participating in clinical research studies at an academic medical center (AMC). The purpose was twofold: to gauge the effectiveness of the survey, as well as to determine the level of satisfaction of the research participants. The authors developed and implemented an electronic research participant satisfaction survey. It was created to provide research teams at the authors’ AMC with a common instrument to capture research participant experiences in order to improve upon the quality of research operations. The instrument captured participant responses in a standardized format. Ultimately, the results are to serve as a means to improve the research experience of participants for single studies, studies conducted within a division or department of the AMC, or across the entire research enterprise at the institution. For ease of use, the survey was created within an electronic data capture system known as REDCap, which is used by a consortium of more than 1,800 institutional partners as a tool from the Clinical and Translational Science Awards (CTSA) program of the National Institutes of Health (NIH). Participants in the survey described in this article were more than 18 years of age and participating in an institutional review board (IRB)-approved study. Results showed that the vast majority of participants surveyed had a positive experience engaging in research at the authors’ AMC. Further, the tool was found to be effective in making that determination. The authors hope to expand the use of the survey as a means to increase research satisfaction and quality at their university. PMID:27390769

  20. Beating the Barriers: Recruitment of People with Intellectual Disability to Participate in Research

    ERIC Educational Resources Information Center

    Lennox, N.; Taylor, M.; Rey-Conde, T.; Bain, C.; Purdie, D. M.; Boyle, F.

    2005-01-01

    The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research. Our project was a…

  1. Research Participation by Older Adults at the End-of-Life: Barriers and Solutions

    PubMed Central

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2013-01-01

    The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life. PMID:20078006

  2. Developing a Model of the Benefits and Burdens of Research Participation in Cancer Clinical Trials

    PubMed Central

    Ulrich, Connie M.; Knafl, Kathleen A.; Ratcliffe, Sarah J.; Richmond, Therese S.; Grady, Christine; Miller-Davis, Claiborne; Wallen, Gwenyth R.

    2013-01-01

    Background Recruiting and retaining human participants in cancer clinical trials is challenging for many investigators. Although we expect participants to identify and weigh the benefits and burdens of research participation for themselves, it is not clear what burdens adult cancer participants perceive in relation to benefits. We identify key attributes and develop an initial conceptual framework of benefit and burden based on interviews with individuals enrolled in cancer clinical research. Methods Semistructured interviews were conducted with a purposive sample of 32 patients enrolled in cancer clinical trials at a large northeastern cancer center. Krueger's guidelines for qualitative methodology were followed. Results Respondents reported a range of benefits and burdens associated with research participation. Benefits such as access to needed medications that subjects otherwise might not be able to afford, early detection and monitoring of the disease, potential for remission or cure, and the ability to take control of their lives through actively participating in the trial were identified. Burdens included the potentiality of side effects, worry and fear of the unknown, loss of job support, and financial concerns. Conclusions Both benefit and burden influence research participation, including recruitment and retention in clinical trials. Dimensions of benefit and burden include physical, psychological, economic, familial, and social. Understanding the benefit-burden balance involved in the voluntary consent of human subjects is a fundamental tenet of research and important to ensure that subjects have made an informed decision regarding their decision to participate in clinical research. PMID:24748992

  3. Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

    PubMed

    Breitkopf, Carmen Radecki; Petersen, Gloria M; Wolf, Susan M; Chaffee, Kari G; Robinson, Marguerite E; Gordon, Deborah R; Lindor, Noralane M; Koenig, Barbara A

    2015-01-01

    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death. PMID:26479556

  4. Reasons for and Reservations about Research Participation in Acutely Injured Adults

    PubMed Central

    Irani, Elliane; Richmond, Therese S.

    2014-01-01

    Purpose The purpose of this study was to explore the reasons adult patients seeking emergency department care for minor injuries agree to participate in clinical research and to identify their reservations about participating in a research study. Design and Methods This is a secondary analysis of data from a longitudinal cohort study of 275 adults who sought emergency department care for physical injury and were followed over 12 months. At the final interview, participants were asked open-ended short-answer questions about their perception of participating in the study. Free text responses were analyzed using conventional content analysis. Findings The final sample of 214 participants was equally males and females, predominately Black (54%) and White (42%), with a mean age of 41 years. Six themes about reasons for participation emerged from free text responses: being asked, altruism, potential for personal benefit, financial gain, curiosity, and valuing and/or knowledge of research. Most did not report reservations. Those reservations identified included: time constraints, confidentiality, and whether patients felt well suited to fulfill the study requirements. Conclusion Although injured patients are identified by the research community as vulnerable, they are willing to participate in research studies for diverse reasons and their participation is commonly associated with positive experiences. PMID:25599886

  5. Reciprocity-Based Reasons for Benefiting Research Participants: Most Fail, the Most Plausible is Problematic

    PubMed Central

    Sofaer, Neema

    2014-01-01

    A common reason for giving research participants post-trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non-participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it. PMID:24602060

  6. Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland

    PubMed Central

    McDaid, Lisa Margaret; Hilton, Shona

    2015-01-01

    An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men’s accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to ‘community’ efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial. PMID:26252480

  7. Influence of scary beliefs about the Tuskegee Syphilis Study on willingness to participate in research

    PubMed Central

    Davis, Jenna L.; Green, B. Lee; Katz, Ralph V.

    2013-01-01

    Objectives To assess whether scary/alarming beliefs about details on the Tuskegee Syphilis Study (TSS) are associated with willingness and/or fear to participate in biomedical research. Methods Scary beliefs about TSS were examined for 565 Black and White adults who had heard of the TSS. Multivariate analyses by race were used to measure association. Results No association between scary beliefs and willingness or fear to participate in research was found (P>0.05). Conclusions These findings provide additional evidence that awareness or detailed knowledge about the TSS does not appear today to be a major factor influencing Blacks’ willingness to participate in research. PMID:22924230

  8. Do undergraduate student research participants read psychological research consent forms? Examining memory effects, condition effects, and individual differences

    PubMed Central

    Pedersen, Eric R.; Neighbors, Clayton; Tidwell, Judy; Lostutter, Ty

    2013-01-01

    While research has examined factors influencing understanding of informed consent in biomedical and forensic research, less is known about participants’ attention to details in consent documents in psychological survey research. The present study used a randomized experimental design and found the majority of participants were unable to recall information from the consent form in both in-person and online formats. Participants were also relatively poor at recognizing important aspects of the consent form including risks to participants and confidentiality procedures. Memory effects and individual difference characteristics also appeared to influence recall and recognition of consent form information. PMID:23459667

  9. Sexual Assault Victims Participating in Research: Causing Harm When Trying to Help?

    PubMed

    Nielsen, Louise Hjort; Hansen, Maj; Elklit, Ask; Bramsen, Rikke Holm

    2016-06-01

    For fear of causing unnecessary distress, ethical concerns have been raised in regard to asking vulnerable persons e.g. sexually traumatized victims to participate in scientific research studies. The current study investigates how victims of sexual assault perceived participating in scientific research in regard to victims' psychological and/or physiological distress and potential beneficial outcomes from participation (N=51). Results from interviews with victims indicated that the majority of victims of sexual assault who had taken part in the study considered their participation in research a positive experience causing little short- or long-term psychological or physiological distress. In addition, over half of the respondents reported some benefits from participation. PMID:27256950

  10. Research involvement, support needs, and factors affecting research participation: a survey of Mental Health Consultation Liaison Nurses.

    PubMed

    McMaster, Rose; Jammali-Blasi, Asmara; Andersson-Noorgard, Kurt; Cooper, Kerrie; McInnes, Elizabeth

    2013-04-01

    The aims of this study were to identify research involvement and support needs of Mental Health Consultation Liaison Nurses (MHCLN) and the factors that affect participation in research. A self-administered, standardized, anonymous questionnaire was distributed to a convenience sample of MHCLN. Frequencies and univariate analyses were calculated to examine relationships between: (i) involvement in a research study by highest qualification and job designation; and (ii) current enrolment in a higher degree study, research goals, and current research involvement by level of research skill. Open-ended responses were collated and summarized. Of the 34 workshop attendees, 32 participated in the survey (response rate 94%). Seventy-five percent of respondents agreed that involvement in research is an expectation of their role; 75% reported no current involvement in research. Over half (53%) of participants reported having research goals over the next 12 months. Those enrolled in postgraduate degrees were more likely to be currently involved in a research project (P=0.013). Commonly reported barriers to research participation were competing commitments and lack of support, resources, confidence, and motivation. This study showed that access to research support and resources, including mentorship and funding, are required to engage these MHCLN in research and to build capacity. PMID:22762255

  11. Developing a Fully Integrated Medical Transport Record to Support Comparative Effectiveness Research for Patients Undergoing Medical Transport

    PubMed Central

    Reimer, Andrew P.; Madigan, Elizabeth

    2013-01-01

    The consolidation of health care systems to develop centers of clinical excellence has led to an increased reliance on medical transport to move patients requiring time-sensitive interventions and specialized treatments. There is a paucity of outcomes data, specifically comparative effectiveness research, related to the efficacy of different transport services and the overall morbidity and mortality of patients that undergo medical transfer. The rapid development of electronic medical record (EMR) use has also occurred with transport charting. However, limited studies have incorporated transport chart data in outcomes analyses. We have begun development of a fully integrated medical transport record, combining transport and hospitals EMRs, to support research efforts and develop clinical decision support tools for transported patients. In this paper, we describe the elements necessary to develop a fully integrated medical transport EMR to support the conduct of comparative effectiveness research, outline the current limitations and challenges, and provide insight into the future direction in developing clinical decision support tools for patients requiring transport. PMID:25848576

  12. A Review of Research on Small-School Student Participation in Extracurricular Activities.

    ERIC Educational Resources Information Center

    Stevens, Neil G.; Peltier, Gary L.

    1994-01-01

    Research reveals that high school students in small schools participate more in extracurricular activities than their peers in large schools; that a high degree of student participation provides opportunities for enhancing leadership, responsibility, and motivation; that students in small schools feel needed; and that the benefits of…

  13. Participation, Roles and Processes in a Collaborative Action Research Project: A Reflexive Account of the Facilitator

    ERIC Educational Resources Information Center

    Avgitidou, Sofia

    2009-01-01

    This paper analyses and discusses the roles and participation of those involved in a collaborative action research project to highlight the factors that influenced their content, quality and intensity. Emphasis is given to the reflections of the facilitator (author) on the processes employed to achieve equal participation and roles in the action…

  14. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND CULTURAL EXCHANGE PROGRAM § 63.4 Grants to...

  15. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 22 Foreign Relations 1 2014-04-01 2014-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  16. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 22 Foreign Relations 1 2011-04-01 2011-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  17. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 22 Foreign Relations 1 2012-04-01 2012-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  18. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 22 Foreign Relations 1 2013-04-01 2013-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  19. Intervention Research to Benefit People with Autism: How Old Are the Participants?

    ERIC Educational Resources Information Center

    Edwards, Timothy L.; Watkins, Erin E.; Lotfizadeh, Amin D.; Poling, Alan

    2012-01-01

    We determined the reported ages of participants with autism (or autism spectrum disorders) in 146 intervention research studies published recently in four prominent journals. Most participants were between two and eight years of age and only 1.7% of them were 20 or more years of age. These findings suggest that the special needs of older people…

  20. Performance Incentives in Texas: Why Schools Chose Not to Participate. Research Brief

    ERIC Educational Resources Information Center

    National Center on Performance Incentives, 2008

    2008-01-01

    In "Performance Incentives in Texas: Why Schools Chose Not to Participate"--a paper presented at the National Center on Performance Incentives research to policy conference in February--Jessica Lewis and Matthew Springer of Vanderbilt University examine why some Texas public schools declined to participate in the Texas Educator Excellence Grant…

  1. Consistency of Practical and Formal Epistemologies of Science Held by Participants of a Research Apprenticeship

    ERIC Educational Resources Information Center

    Burgin, Stephen R.; Sadler, Troy D.

    2013-01-01

    The purpose of this research was to examine the consistency between students' practical and formal understandings of scientific epistemologies (also known as nature of science (NOS) understandings) in the context of a research apprenticeship program. Six high school student participants of a residential summer research apprenticeship program…

  2. Cultivating Research Pedagogies with Adolescents: Created Spaces, Engaged Participation, and Embodied Inquiry

    ERIC Educational Resources Information Center

    Wissman, Kelly K.; Staples, Jeanine M.; Vasudevan, Lalitha; Nichols, Rachel E.

    2015-01-01

    This paper conceptualizes an approach to adolescent literacies research we call "research pedagogies." This approach recognizes the pedagogical features of the research process and includes three dimensions: created spaces, engaged participation, and embodied inquiry. By drawing upon and sometimes recasting foundational anthropological…

  3. How Europe Shapes Academic Research: Insights from Participation in European Union Framework Programmes

    ERIC Educational Resources Information Center

    Primeri, Emilia; Reale, Emanuela

    2012-01-01

    This article describes the effects of participating in European Union Framework Programmes (EUFPs) at the level of research units and researchers. We consider EUFPs as policy instruments that contribute to the Europeanisation of academic research and study the changes they produce with respect to: 1) the organisation and activities of Departments,…

  4. 'Seeing through Different Eyes': Exploring the Value of Participative Research Using Images in Schools

    ERIC Educational Resources Information Center

    Kaplan, Ian; Howes, Andy

    2004-01-01

    This article is an exploration of the value of research involving images in a school, and aims to provoke more general discussion of the purpose, value and risks of educational research using images. It reports on a participative research project in a secondary school which led to the construction of a web site based on images of that school. The…

  5. Why Don't Our Students Respond? Understanding Declining Participation in Survey Research among College Students

    ERIC Educational Resources Information Center

    Tschepikow, William K.

    2012-01-01

    Declining response rates among college students threaten the effectiveness of survey research at institutions of higher education. The purpose of this qualitative study was to understand the conditions that promote participation in survey research among this population. The researcher identified three themes through this study. First, participants…

  6. Minority Male Participation in Educational Research and Development: A Recruitment Selection Dilemma.

    ERIC Educational Resources Information Center

    Braithwaite, Ronald L.; Beatty, Lula

    1981-01-01

    Despite Federal efforts to increase minority participation in university level research and development (R & D), there is a disproportionate underrepresentation of minority men as trainees. Reasons seem to lie in R & D recruitment strategies and practices. (Author/GC)

  7. The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research

    PubMed Central

    Katz, Ralph V.; Russell, Stefanie L.; Kegeles, S. Steven; Kressin, Nancy R.; Green, B. Lee; Wang, Min Qi; James, Sherman A.; Claudio, Cristina

    2006-01-01

    The broad goal of the Tuskegee Legacy Project (TLP) study was to address, and understand, a range of issues related to the recruitment and retention of Blacks and other minorities in biomedical research studies. The specific aim of this analysis was to compare the self-reported willingness of Blacks, Hispanics, and Whites to participate as research subjects in biomedical studies, as measured by the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. The Tuskegee Legacy Project Questionnaire, a 60 item instrument, was administered to 1,133 adult Blacks, Hispanics, and non-Hispanic Whites in 4 U.S. cities. The findings revealed no difference in self-reported willingness to participate in biomedical research, as measured by the LOP Scale, between Blacks, Hispanics, and Whites, despite Blacks being 1.8 times as likely as Whites to have a higher fear of participation in biomedical research on the GPFF Scale. PMID:17242525

  8. On the Alleged Right to Participate in High-Risk Research.

    PubMed

    Różyńska, Joanna

    2015-09-01

    Reigning regulatory frameworks for biomedical research impose on researchers and research ethics committees an obligation to protect research participants from risks that are unnecessary, disproportionate to potential research benefits, and non-minimized. Where the research has no potential to produce results of direct benefit to the subjects and the subjects are unable to give consent, these requirements are strengthened by an additional condition, that risks should not exceed a certain minimal threshold. In this article, I address the question of whether there should be limits of permissible risks in non-therapeutic research involving competent and healthy subjects. Some commentators argue that competent and informed individuals should have a right to participate even in extremely risky research and that research ethics committees should never reject studies because they are too dangerous. To use David Shaw's expression, competent volunteers should have 'a right to participate in high-risk research'. I argue that this idea is ill-founded, as it does not take into account the social mission and complex collaborative nature of research practice as well as the inequity of power between researchers and subjects. Imposition of limits on permissible risks for healthy volunteers is justified by the need to protect research enterprise and the need to protect the weaker party, namely the subjects. Also, I suggest that the best way to set boundaries on research risks is to leave the judgment of risk acceptability to research ethics committees. PMID:25644532

  9. Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

    PubMed

    Jarvik, Gail P; Amendola, Laura M; Berg, Jonathan S; Brothers, Kyle; Clayton, Ellen W; Chung, Wendy; Evans, Barbara J; Evans, James P; Fullerton, Stephanie M; Gallego, Carlos J; Garrison, Nanibaa' A; Gray, Stacy W; Holm, Ingrid A; Kullo, Iftikhar J; Lehmann, Lisa Soleymani; McCarty, Cathy; Prows, Cynthia A; Rehm, Heidi L; Sharp, Richard R; Salama, Joseph; Sanderson, Saskia; Van Driest, Sara L; Williams, Marc S; Wolf, Susan M; Wolf, Wendy A; Burke, Wylie

    2014-06-01

    As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants' health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles. PMID:24814192

  10. Assessment of caregivers' willingness to participate in an intervention research study.

    PubMed

    Murphy, Margaret R; Escamilla, Monica I; Blackwell, Paula H; Lucke, Kathy T; Miner-Williams, Denise; Shaw, Virginia; Lewis, Sharon L

    2007-06-01

    The purpose of the study was to identify factors that influenced family caregivers' decisions to participate in an intervention research study. In interviews conducted before and after the intervention, caregivers (n=21) described reasons for participation. A focused content analysis was used to examine responses. Themes that emerged included: (a) caregivers recognized a need for help; (b) expectations and motivations toward change; (c) recognition of self worth as caregivers; (d) timeliness of recruitment strategies; (e) support of research staff affected recruitment; and (f) caregivers recognized the benefits of participation. These findings support the importance of many different strategies for effective recruitment of caregivers in future studies. PMID:17514708

  11. Researchers’ and Clinicians’ Perceptions of Recruiting Participants to Clinical Research: A Thematic Meta-Synthesis

    PubMed Central

    Newington, Lisa; Metcalfe, Alison

    2014-01-01

    Background Recruiting the desired number of research participants is frequently problematic with resulting financial and clinical implications. The views of individuals responsible for participant recruitment have not been previously reviewed. This systematic review and thematic meta-synthesis explores researchers’ and clinicians’ experiences and perceptions of recruiting participants to clinical research, with the aim of informing improved recruitment systems and strategies. Methods Studies published between January 1995 and May 2013 were identified from: Ovid MEDLINE, Ovid EMBASE, Ovid PSYCHINFO, ASSIA, British Nursing Index, Scopus, Web of Science, CINAHL and PubMed. Included studies were original peer reviewed research, with qualitative methodologies and an aim of exploring the views of clinicians and/or researchers on recruitment to clinical research. Studies discussing the recruitment of patients unable to give informed consent were excluded. The findings sections of the relevant studies were free coded to identify key concepts which were grouped into hierarchical themes. The quality of the identified studies was assessed and the relative contribution of each paper was checked to ensure individual studies did not dominate in any theme. Results Eighteen relevant papers were identified which examined the views of researchers and clinicians in 10 clinical specialties. Five main themes emerged: building a research community, securing resources, the nature of research, professional identities and recruitment strategies. The views of researchers and clinicians were similar, although the role of ‘researcher’ was inconsistently defined. Conclusions The general experience of recruiting participants to clinical research was one of competition and compromise. Competition arose over funding, staffing and participants, and between clinical and research responsibilities. Compromise was needed to create study designs that were acceptable to patients, clinicians and

  12. Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

    PubMed Central

    Trinidad, Susan Brown; Fullerton, Stephanie M.; Bares, Julie M.; Jarvik, Gail P.; Larson, Eric B.; Burke, Wylie

    2012-01-01

    Background To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared. Methods We conducted focus groups with 45 members of a Seattle-based integrated healthcare delivery system to learn about their views and expectations for informed consent in genome-scale studies. Results Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational – rather than contractual – terms, compared with younger participants. The majority of participants endorsed seeking study subjects’ permission regarding material changes in study purpose and data sharing. Conclusions Although this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement, as well as strategies for ongoing communication with study participants. PMID:23493836

  13. African American Participation in Alzheimer’s Disease Research that Includes Brain Donation

    PubMed Central

    Darnell, Kathryn R.; McGuire, Caitlin

    2012-01-01

    Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to variety of factors including a mistrust of the predominately white research establishments and a lack of education about the purpose of research. The current study was designed to determine African-American interest in Alzheimer’s disease (AD) research and to recruit African Americans as normal controls in current AD studies with the goal of eventually gaining consent for brain donation upon death. Participants were 46 African Americans aged 65 or older who were interviewed about knowledge of medical procedures and experience with research. After initial recruitment interviews, 31.7% of participants agreed to yearly testing with eventual brain donation. Study findings suggest a moderate relationship between participants’ knowledge of medical procedures used to prolong life and willingness to donate one’s brain. PMID:22009227

  14. From subject to participant: ethics and the evolving role of community in health research.

    PubMed

    Bromley, Elizabeth; Mikesell, Lisa; Jones, Felica; Khodyakov, Dmitry

    2015-05-01

    Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research. PMID:25790380

  15. From Subject to Participant: Ethics and the Evolving Role of Community in Health Research

    PubMed Central

    Mikesell, Lisa; Jones, Felica; Khodyakov, Dmitry

    2015-01-01

    Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research. PMID:25790380

  16. Insider-Outsider-Inbetweener? Researcher Positioning, Participative Methods and Cross-Cultural Educational Research

    ERIC Educational Resources Information Center

    Milligan, Lizzi

    2016-01-01

    This article reflects on the use of participative techniques with final-year secondary school students in one rural community in Western Kenya as an enabling tool for an outsider to both gain insider perspectives and develop a more insider role in that community by privileging and legitimating participant-driven data. Conclusions put forward the…

  17. Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

    PubMed Central

    2013-01-01

    Background Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. Methods Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues. Results Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent. Conclusions While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways

  18. Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between

    PubMed Central

    Jarvik, Gail P.; Amendola, Laura M.; Berg, Jonathan S.; Brothers, Kyle; Clayton, Ellen W.; Chung, Wendy; Evans, Barbara J.; Evans, James P.; Fullerton, Stephanie M.; Gallego, Carlos J.; Garrison, Nanibaa’ A.; Gray, Stacy W.; Holm, Ingrid A.; Kullo, Iftikhar J.; Lehmann, Lisa Soleymani; McCarty, Cathy; Prows, Cynthia A.; Rehm, Heidi L.; Sharp, Richard R.; Salama, Joseph; Sanderson, Saskia; Van Driest, Sara L.; Williams, Marc S.; Wolf, Susan M.; Wolf, Wendy A.; Harley, John; Myers, Melanie; Namjou, Bahram; Vinks, Sander; Connolly, John; Keating, Brendan; Gerhard, Glenn; Sundaresan, Agnes; Tromp, Gerard; Crosslin, David; Leppig, Kathy; Wicklund, Cathy; Chute, Christopher; Lynch, John; De Andrade, Mariza; Heit, John; McCormick, Jen; Brilliant, Murray; Kitchner, Terrie; Ritchie, Marylyn; Böttinger, Erwin; Peter, Inga; Persell, Stephen; Rasmussen-Torvik, Laura; McGregor, Tracy; Roden, Dan; Antommaria, Armand; Chiavacci, Rosetta; Faucett, Andy; Ledbetter, David; Williams, Janet; Hartzler, Andrea; Vitek, Carolyn R. Rohrer; Frost, Norm; Ferryman, Kadija; Horowitz, Carol; Rhodes, Rosamond; Zinberg, Randi; Aufox, Sharon; Pan, Vivian; Long, Rochelle; Ramos, Erin; Odgis, Jackie; Wise, Anastasia; Hull, Sara; Gitlin, Jonathan; Green, Robert; Metterville, Danielle; McGuire, Amy; Kong, Sek Won; Trinidad, Sue; Veenstra, David; Roche, Myra; Skinner, Debra; Raspberry, Kelly; O’Daniel, Julianne; Parsons, Will; Eng, Christine; Hilsenbeck, Susan; Karavite, Dean; Conlin, Laura; Spinner, Nancy; Krantz, Ian; Falk, Marni; Santani, Avni; Dechene, Elizabeth; Dulik, Matthew; Bernhardt, Barbara; Schuetze, Scott; Everett, Jessica; Gornick, Michele Caroline; Wilfond, Ben; Tabor, Holly; Lemke, Amy A.; Richards, Sue; Goddard, Katrina; Cooper, Greg; East, Kelly; Barsh, Greg; Koenig, Barbara; Van Allen, Eliezer; Garber, Judy; Garrett, Jeremy; Zawati, Ma’n; Lewis, Michelle; Savage, Sarah; Smith, Maureen; Roychowdhury, Sameek; Bailey, Alice; Berkman, Benjamin; Anan, Charlisse Caga; Hindorff, Lucia; Hutter, Carolyn; King, Rosalind; Li, Rongling; Lockhart, Nicole; McEwen, Jean; Scholes, Derek; Schully, Sheri; Sun, Kathie; Burke, Wylie

    2014-01-01

    As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants’ health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles. PMID:24814192

  19. Where are all the female participants in Sports and Exercise Medicine research?

    PubMed

    Costello, Joseph T; Bieuzen, Francois; Bleakley, Chris M

    2014-01-01

    The aim of this study is to estimate the ratio of male and female participants in Sports and Exercise Medicine research. Original research articles published in three major Sports and Exercise Medicine journals (Medicine and Science in Sports and Exercise, British Journal of Sports Medicine and American Journal of Sports Medicine) over a three-year period were examined. Each article was screened to determine the following: total number of participants, the number of female participants and the number of male participants. The percentage of females and males per article in each of the journals was also calculated. Cross tabulations and Chi-square analysis were used to compare the gender representation of participants within each of the journals. Data were extracted from 1382 articles involving a total of 6,076,580 participants. A total of 2,366,968 (39%) participants were female and 3,709,612 (61%) were male. The average percentage of female participants per article across the journals ranged from 35% to 37%. Females were significantly under-represented across all of the journals (χ(2) = 23,566, df = 2, p < 0.00001). In conclusion, Sports and Exercise Medicine practitioners should be cognisant of sexual dimorphism and gender disparity in the current literature. PMID:24766579

  20. Participation in Research Program: A Novel Course in Undergraduate Education of Life Science

    ERIC Educational Resources Information Center

    Zhou, Xuanwei; Lin, Juan; Yin, Yizhou; Sun, Xiaofen; Tang, Kexuan

    2007-01-01

    A novel course, "Participation in Research Program (PRP)" in life sciences is open for 1st to 3rd year undergraduates. PRP introduces the principles of a variety of biological methods and techniques and also offers an opportunity to explore some specific knowledge in more detail prior to thesis research. In addition, the PRP introduces some…

  1. Our Anonymous Online Research Participants Are Not Always Anonymous: Is This a Problem?

    ERIC Educational Resources Information Center

    Dawson, Phillip

    2014-01-01

    When educational research is conducted online, we sometimes promise our participants that they will be anonymous--but do we deliver on this promise? We have been warned since 1996 to be careful when using direct quotes in Internet research, as full-text web search engines make it easy to find chunks of text online. This paper details an empirical…

  2. Using Single-Participant Research To Assess Counseling Approaches on Children's Off-Task Behavior.

    ERIC Educational Resources Information Center

    Yarbrough, Jamie L.; Thompson, Charles L.

    2002-01-01

    Researches the efficacy of reality therapy and solution- focused brief counseling with elementary school students engaging in off-task behavior and demonstrates the utility of a single- participant design in conducting counseling research. Significant positive changes in the on-task behaviors of the students resulted from both approaches.…

  3. Researching Youth Political Participation in Australia: Arguments for an Expanded Focus

    ERIC Educational Resources Information Center

    Fyfe, Ian

    2009-01-01

    The distinct political lives and lifestyles of young people provide a rich arena for social research. This paper traces the origins of contemporary definitions of political participation, which are often at odds with the real experiences and aspirations of young citizens. Despite a growing body of empirical evidence in this field, researchers are…

  4. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

    ERIC Educational Resources Information Center

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-01-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and…

  5. Using CAI To Improve Participation and Achievement in Science Research Projects in Middle School Science.

    ERIC Educational Resources Information Center

    Price, Suzanne M.

    The high percentage of students not participating in or completing a science research project has been a recurring problem for science teachers. In this project, three variables influencing the problem are identified: (1) students' failure to engage in an active search for science research topics; (2) inadequate resource materials at the middle…

  6. Educating for a Critical Democracy: Civic Participation Reimagined in the Council of Youth Research

    ERIC Educational Resources Information Center

    Mirra, Nicole; Morrell, Ernest D.; Cain, Ebony; Scorza, D'Artagnan; Ford, Arlene

    2013-01-01

    This article explores civic learning, civic participation, and the development of civic agency within the Council of Youth Research (the Council), a program that engages high school students in youth participatory action research projects that challenge school inequalities and mobilize others in pursuit of educational justice. We critique the…

  7. Challenges in the Use of Social Networking Sites to Trace Potential Research Participants

    ERIC Educational Resources Information Center

    Marsh, Jackie; Bishop, Julia C.

    2014-01-01

    This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…

  8. Quality of Life from the Point of View of Latin American Families: A Participative Research Study

    ERIC Educational Resources Information Center

    Aznar, A. S.; Castanon, D. G.

    2005-01-01

    Background: To date, little research has focused on what factors constitute a quality of life (QOL) among Latin American families with a member who is intellectually disabled. Method: Total 180 Latin American families cooperated in a participative research project. During 18 months, the families and a team exchanged information about their QOL by…

  9. The Influences of Faculty on Undergraduate Student Participation in Research and Creative Activities

    ERIC Educational Resources Information Center

    Hu, Shouping; Scheuch, Kathyrine; Gayles, Joy Gaston

    2009-01-01

    Using data collected from surveys of college juniors and seniors and faculty members in related academic departments, this study examined whether faculty teaching and research orientations, as well as faculty external funding, had any impact on undergraduate student participation in research and creative activities. The results of the study…

  10. Building Bridges across Knowledge Systems: Ubuntu and Participative Research Paradigms in Bantu Communities

    ERIC Educational Resources Information Center

    Muwanga-Zake, J. W. F.

    2009-01-01

    This paper discusses how Ubuntu as a philosophy and a methodology was used among Bantu in South Africa together with participative Western paradigms in evaluating an educational computer game. The paper argues that research among Bantu has to articulate research experiences within Ubuntu paradigms if valid outcomes are to be realised. (Contains 1…

  11. Social Science Theory and Research on Participation and Voluntary Associations: A Bibliographic Essay.

    ERIC Educational Resources Information Center

    Steinberg, Lois Saxelby

    This literature review is intended for policymakers and researchers concerned with citizen participation in the educational decision-making process. The study examines (1) the functions of interest groups in social science analysis of the political process; (2) the dominant theories employed in social research on interest group processes; (3) the…

  12. Training Future Scientists: Predicting First-Year Minority Student Participation in Health Science Research

    ERIC Educational Resources Information Center

    Hurtado, Sylvia; Eagan, M. Kevin; Cabrera, Nolan L.; Lin, Monica H.; Park, Julie; Lopez, Miguel

    2008-01-01

    Using longitudinal data from the UCLA Cooperative Institutional Research Program (CIRP) and Your First College Year (YFCY) surveys, this study examines predictors of the likelihood that science-oriented students would participate in a health science undergraduate research program during the first year of college. The key predictors of…

  13. Offering African Americans Opportunities to Participate in Clinical Trials Research: How Social Workers Can Help

    ERIC Educational Resources Information Center

    Mason, Susan E.

    2005-01-01

    Historically, African Americans have resisted participation in clinical trials and other research projects because of distrust of the mostly white research establishment. Although there are legitimate reasons for refusing to join clinical trials, most notably the abuses of the Tuskegee Syphilis Study, African Americans may be passing up…

  14. Building Participation through Market Research. The Guide Series in Continuing Education.

    ERIC Educational Resources Information Center

    Campbell, M. Donald

    Market research, important for professional renewal, is a critical part of continuing education program planning. It includes attention to learning needs and learner motivation to participate in continuing education. Informal market research makes use of internal sources, such as enrollment data, program evaluations, policy statements, and staff…

  15. Barriers to Clinical Research Participation in a Diabetes Randomized Clinical Trial

    PubMed Central

    Yozwiak, John A; Bearman, Diane L; Strand, Trudy D; Strasburg, Katherine R

    2009-01-01

    Little is known about how barriers to research participation are perceived, affected by or interact with patient characteristics, or how they vary over the course of a clinical trial. Participants (285) in the Renin-Angiotensin System Study (RASS), a randomized clinical primary prevention study of diabetic nephropathy and retinopathy at 2 Canadiana dn 1 US university, rated potential barriers to research participation yearly for 5 years. Baseline barriers rated as most adversely affecting participation were: missing work; frequency of appointments and procedures; study length; number of appointments and procedures; access to study location; and physical discomfort associated with procedures. Inadequate social support, unstable job, and use of alcohol and drugs were cited relatively infrequently, suggesting that although they may be important, candidates for whom these might be issues likely self-selected out of the study. Gender and gender by age interactions were found for specific perceived barriers, such as work and child care, and baseline barriers correlated with adherence. Elucidating the natural history of barriers to research participation is a step toward identifying strategies for helping participants overcome them, and ultimately may enhance the conduct of research. PMID:19167143

  16. US Department of Energy Teacher Research Associates Program: Profile and survey of 1990--1991 participants

    SciTech Connect

    Vivio, F.M.; Stevenson, W.L.

    1992-11-01

    Through its laboratories, facilities, and technology centers, the United States Department of Energy supports the development and training of scientists and engineers to meet the nation`s future human resource needs in energy science and technology. This mission is accomplished, in part, through summer programs of active participation by precollege teachers in laboratory research. Since 1989, the Teacher Research Associates (TRAC) program has provided outstanding 7th- through 12th-grade science, mathematics, and technology teachers from across the nation the opportunity to participate in ongoing research projects at DOE laboratories. The TRAC program encourages participants, upon returning to their home institution, to share with their students and colleagues the experience and knowledge gained through their research endeavors.

  17. We could be heroes: ethical issues with the pre-recruitment of research participants.

    PubMed

    Hunter, David

    2015-07-01

    Pre-recruitment is the practice of recruiting potential participants to a list of potential research volunteers in general rather than to a specific research project. This is a relatively common practice in commercial medical research as it reduces the time and hence costs of recruitment and makes it possible to be more efficient by recruiting participants who may be useful for a variety of different pieces of research. It focuses on present practices in the UK although the conclusions and suggestions should be read more widely than this, applying in any situation where pre-recruitment is used as a recruitment tool for clinical trials and beyond. Current pre-recruitment practices in the UK clash significantly with what are seen as best practices and ethical guidance with regard to recruiting participants to individual trials, and insofar as this undermines these practices should be reformed. PMID:25700106

  18. Broadening participation in Research Experiences for Undergraduates (REU) programs: an evaluation of the team research model for undergraduate research experiences

    NASA Astrophysics Data System (ADS)

    Berthelote, A. R.; Geraghty Ward, E. M.; Dalbotten, D. M.

    2014-12-01

    The REU site on sustainable land and water resources has a goal of broadening participation in the geosciences by underrepresented groups and particularly Native American students. We are evaluating modifications to the traditional REU model in order to better support these students. First, we review a team research model for REU students, where students are placed on teams and work together in peer groups supported by a team of mentors. Second, the REU takes place in locations that have high populations of Native American students to remove barriers to participation for non-traditional students. Finally, the teams do research on issues related to local concerns with cultural focus. Traditional REU models (1 faculty to 1 student/on campus) have been shown to be effective in supporting student movement into graduate programs but often fail to attract a diverse group of candidates. In addition, they rely for success on the relationship between faculty and student, which can often be undermined by unrealistic expectations on the part of the student about the mentor relationship, and can be exacerbated by cultural misunderstanding, conflicting discourse, or students' personal or family issues. At this REU site, peer mentorship and support plays a large role. Students work together to select their research question, follow the project to completion and present the results. Students from both native and non-native backgrounds learn about the culture of the partner reservations and work on a project that is of immediate local concern. The REU also teaches students protocols for working on Native American lands that support good relations between reservation and University. Analysis of participant data gathered from surveys and interview over the course of our 3-year program indicates that the team approach is successful. Students noted that collaborating with other teams was rewarding and mentors reported positively about their roles in providing guidance for the student

  19. Teachers' participation in research programs improves their students' achievement in science.

    PubMed

    Silverstein, Samuel C; Dubner, Jay; Miller, Jon; Glied, Sherry; Loike, John D

    2009-10-16

    Research experience programs engage teachers in the hands-on practice of science. Program advocates assert that program participation enhances teachers' skills in communicating science to students. We measured the impact of New York City public high-school science teachers' participation in Columbia University's Summer Research Program on their students' academic performance in science. In the year before program entry, students of participating and nonparticipating teachers passed a New York State Regents science examination at the same rate. In years three and four after program entry, participating teachers' students passed Regents science exams at a rate that was 10.1% higher (P = 0.049) than that of nonparticipating teachers' students. Other program benefits include decreased teacher attrition from classroom teaching and school cost savings of U.S. $1.14 per $1 invested in the program. PMID:19833969

  20. Voluntary consent in correctional settings: do offenders feel coerced to participate in research?

    PubMed

    Edens, John F; Epstein, Monica; Stiles, Paul G; Poythress, Norman G

    2011-01-01

    A major ethical concern in research with criminal offenders is the potential for abuse due to coercive influences that may adversely affect offenders' capacity to give voluntary consent to participate in research conducted in correctional settings. Despite this concern, to date there have been almost no systematic scientific investigations of the extent to which offenders themselves perceive that coercion occurs in these settings or that it is likely to influence their decisions about research participation. In a sample of over 600 ethnically diverse men and women recruited from various prisons and community corrections facilities in Texas and Florida, we used a vignette-based survey concerning a hypothetical research project to measure and compare offenders' global perceptions of coercive processes, as well as the differential salience and perceived coercive influence of specific factors (e.g., coercion by other inmates, inducements from staff). Somewhat surprisingly, across multiple outcome measures our participants on average reported relatively little in the way of significant coercive influences on their capacity to make voluntary decisions concerning research participation. Implications and directions for future research on coercive influences in offender research are discussed. PMID:22086664

  1. Redes En Acción. Increasing Hispanic participation in cancer research, training, and awareness.

    PubMed

    Ramirez, Amelie G; Talavera, Gregory A; Marti, Jose; Penedo, Frank J; Medrano, Martha A; Giachello, Aida L; Pérez-Stable, Eliseo J

    2006-10-15

    Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Acción established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Acción has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in non-Redes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addition, the program conducted extensive national survey research that provided the basis for the Redes En Acción Latino Cancer Report, a national agenda on Hispanic cancer issues. Redes En Acción has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006. (c) 2006 American Cancer Society. PMID:16958026

  2. Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

    PubMed Central

    Mascalzoni, Deborah; Soini, Sirpa; Machado, Helena; Kaye, Jane; Bentzen, Heidi Beate; Rial-Sebbag, Emmanuelle; D'Abramo, Flavio; Witt, Michał; Schamps, Geneviève; Katić, Višnja; Krajnovic, Dusanca; Harris, Jennifer R.

    2016-01-01

    Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges. Materials and Methods: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach. Results: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process. Conclusions: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants. PMID:27082461

  3. Using Animation as an Information Tool to Advance Health Research Literacy among Minority Participants

    PubMed Central

    George, Sheba; Moran, Erin; Duran, Nelida; Jenders, Robert A

    2013-01-01

    Lack of adequate consumer health information about clinical research contributes to health disparities among low health literate minority multicultural populations and requires appropriate methods for making information accessible. Enhancing understanding of health research can enable such minority multicultural consumers to make informed, active decisions about their own health and research participation. This qualitative study examines the effectiveness and acceptability of an animated video to enhance what we call health research literacy among minority multicultural populations. A team analyzed the transcripts of 58 focus groups of African Americans, Latinos, Native Hawaiians, and Filipinos in Los Angeles/Hawaii. Participants were accepting of animation and the video’s cultural appropriateness. Communicating information about health research via animation improved participants’ ability to identify personal information-gaps, engage in meaningful community-level dialogue, and ask questions about health research. PMID:24551351

  4. The clinical trial research participant as an inside trader: a legal and policy analysis.

    PubMed

    Horwich, Allan

    2006-01-01

    This Article examines whether a participant in a clinical research trial for a drug obtains material nonpublic information about the drug and its manufacturer or licensor and, if so, whether the participant may lawfully trade securities based on that information. This issue has been noted but not examined in depth in several articles in recent years. After an introduction to the federal law of insider trading and a discussion of relevant aspects of a supervised research trial, the Article concludes that, absent an agreement to the contrary, the participant would be free to trade securities based on any material nonpublic information learned in the trial. The author evaluates the extent to which the information is material and nonpublic and then presents the policy issues surrounding whetherthe participantshould be precluded from trading when in possession of material nonpublic information gained as a result of participation in the trial. While not resolving the competing policy considerations, including the value of allowing participants to make disclosure of their experiences in the trial before publication of the results in a peer reviewed journal, the Article presents an approach for preventing the misuse of material nonpublic information gained in the clinical trial context, by obtaining an agreement from the participant, and an agreement from the limited circle of persons to whom the participant should be allowed to make disclosure in any event (such as his personal physician and family members), that would render any trading by them unlawful under the federal law of insider trading. PMID:16761384

  5. Learning by Doing: Teaching Research Methods through Student Participation in a Commissioned Research Project.

    ERIC Educational Resources Information Center

    Winn, Sandra

    1995-01-01

    For five years, a University of Brighton (England) social policy and administration program has incorporated a student research project into a required research methods course. The sponsored research project places considerable emphasis on student contributions to the research. These features are discussed in the context of one project, a patient…

  6. The Relationship between Undergraduate Research Participation and Subsequent Research Performance of Early Career STEM Graduate Students

    ERIC Educational Resources Information Center

    Gilmore, Joanna; Vieyra, Michelle; Timmerman, Briana; Feldon, David; Maher, Michelle

    2015-01-01

    Undergraduate research experiences have been adopted across higher education institutions. However, most studies examining benefits derived from undergraduate research rely on self-report of skill development. This study used an empirical assessment of research skills to investigate associations between undergraduate research experiences and…

  7. Increasing participation in cancer research: insights from Native Hawaiian women in medically underserved communities.

    PubMed

    Ka'opua, Lana Sue; Mitschke, Diane; Lono, Joelene

    2004-09-01

    The cancer burden falls heavily on Native Hawaiian women, and of particular concern are those living in medically underserved communities where participation in potentially helpful clinical studies may be limited. Difficulty in accrual of Native Hawaiian women to a culturally-grounded intervention led researchers to conduct focus groups aimed at exploring attitudes towards research, use of a traditional Hawaiian practice for family discussion, and study promotion. Social marketing theory guided the development of discussion questions and a survey. Through purposive sampling, 30 women from medically underserved communities were recruited. Content analysis was used to identify major discussion themes. Findings indicate that lack of informational access may be a major barrier to participation. Study information disseminated through community channels with targeted outreach to social and religious organizations, promotion through face-to-face contact with researchers, and culturally tailored messages directed to families were preferred. Community oriented strategies based on linkages with organizational networks may increase participation. PMID:16281696

  8. Protection of human research participants: accreditation of programmes in the Indian context.

    PubMed

    Bhosale, Neelambari; Nigar, Shagoofa; Das, Soma; Divate, Uma; Divate, Pathik

    2014-01-01

    The recent negative media reports on the status of participants in clinical trials in India, together with the concerns expressed by the regulatory bodies, have raised questions regarding India's credibility in the conduct of clinical research. Even though the regulations require the registration of trials with the Clinical Trial Registry-India and despite the recently mandated registration of ethics committees (ECs) with the Drugs Controller General of India, the lack of governmental audit and accreditation procedures and bodies has resulted in inadequate protection of human participants in clinical research. Institutions and research sites would benefit by implementing a human research protection programme, which would safeguard the rights, safety and wellbeing of participants in clinical trials, in addition to improving the processes and procedures for the conduct of the trial. The Jehangir Clinical Development Centre, Pune has received accreditation from the Association for the Accreditation of Human Research Protection Programme (AAHRPP). A unique feature of the AAHRPP is the integrative nature of the programme, wherein the sponsors of the trial, investigators, EC members and institution work towards the common goal of protecting research participants. Here, we discuss the improvement needed in the quality standards of institutions for them to be able to meet the requirements of the AAHRPP. We also suggest the need for a governmental accreditation body, which will be required for the future promotion of and improvement in the standards for clinical practice in India. PMID:24509113

  9. Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.

    PubMed

    Swartling, U; Helgesson, G; Hansson, M G; Ludvigsson, J

    2009-07-01

    Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings. PMID:19567697

  10. From patients to partners: participant-centric initiatives in biomedical research

    PubMed Central

    Kaye, Jane; Curren, Liam; Anderson, Nick; Edwards, Kelly; Fullerton, Stephanie M.; Kanellopoulou, Nadja; Lund, David; MacArthur, Daniel G.; Mascalzoni, Deborah; Shepherd, James; Taylor, Patrick L.; Terry, Sharon F.; Winter, Stefan F.

    2013-01-01

    Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs. PMID:22473380