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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/28078953/evidence-based-strategies-for-shortening-informed-consent-forms-in-clinical-research
#1
Amy Corneli, Emily Namey, Monique P Mueller, Jenae Tharaldson, Steve Sortijas, Thomas Grey, Jeremy Sugarman
Long informed consent forms (ICFs) remain commonplace, yet they can negatively affect potential participants' understanding of clinical research. We aimed to build consensus among six groups of key stakeholders on advancing the use of shorter ICFs in clinical research. Partnering with the HIV Prevention Trials Network (HPTN), we used a modified Delphi process with semistructured interviews and online surveys. Concerns about redundancy of information were common. Respondents supported three strategies for reducing ICF length: (a) 91% agreed or strongly agreed with grouping study procedures by frequency, (b) 91% were comfortable or very comfortable with placing supplemental information into appendices, and (c) 93% agreed or strongly agreed with listing duplicate side effects only once...
January 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220725/european-universities-guidance-on-research-integrity-and-misconduct
#2
Noémie Aubert Bonn, Simon Godecharle, Kris Dierickx
Research integrity is imperative to good science. Nonetheless, many countries and institutions develop their own integrity guidance, thereby risking incompatibilities with guidance of collaborating institutions. We retrieved guidance for academic integrity and misconduct of 18 universities from 10 European countries and investigated accessibility, general content, principles endorsed, and definitions of misconduct. Accessibility and content differ substantially between institutions. There are general trends of common principles of integrity and definitions of misconduct, yet differences remain...
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220724/an-observational-study-of-children-s-involvement-in-informed-consent-for-exome-sequencing-research
#3
Victoria A Miller, Allison Werner-Lin, Sarah A Walser, Sawona Biswas, Barbara A Bernhardt
The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated...
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220723/ethical-issues-surrounding-the-use-of-modern-human-remains-for-research-in-south-africa
#4
N Briers, J J Dempers
Chapter 8 of the South African National Health Act 61 of 2003 (NHA) that deals with the donation of human tissue was promulgated in 2012. The new Act is perceived to impose restrictions on low-risk research involving human remains. This study aimed to identify the issues raised by a research ethics committee (REC) when reviewing protocols where human remains are used as data source. REC minutes from 2009 to 2014 were reviewed, and issues raised by the committee were categorized. In total, 127 protocols submitted to the committee over 6 years involved human remains...
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220722/life-after-research-misconduct
#5
Kyle L Galbraith
Research misconduct is a serious violation of a scientific community's ethical standards. Scientists who commit research misconduct typically face corrective actions from employers and funding agencies, as well as significant professional stigma. Unfortunately, there is little systematic data about the post-misconduct career of these guilty parties. Through a review of Office of Research Integrity (ORI) case summaries, I identified a pool of 284 researchers who engaged in research misconduct and were subject to ORI corrective actions...
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220721/increasing-community-research-capacity-to-address-health-disparities
#6
Goldie Komaie, Christine C Ekenga, Vetta L Sanders Thompson, Melody S Goodman
The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants' knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments...
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28220720/jerhre-s-journey
#7
Joan Sieber, Douglas Wassenaar
No abstract text is available yet for this article.
February 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28007007/to-what-extent-do-risks-need-to-be-minimized
#8
Practical Ethicist
No abstract text is available yet for this article.
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28007006/abstracts-from-the-prim-r-2016-advancing-ethical-research-conference
#9
Emily E Anderson
No abstract text is available yet for this article.
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27646401/are-leadership-and-management-essential-for-good-research-an-interview-study-of-genetic-researchers
#10
Alison L Antes, Adelina Mart, James M DuBois
Principal investigators are responsible for a myriad of leadership and management activities in their work. The practices they use to navigate these responsibilities ultimately influence the quality and integrity of research. However, leadership and management roles in research have received scant empirical examination. Semi-structured interviews with 32 National Institutes of Health (NIH)-funded genetic researchers revealed that they considered leadership and management essential for effective research, but their scientific training inadequately prepared them...
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27307420/is-safety-in-the-eye-of-the-beholder-safeguards-in-research-with-adults-with-intellectual-disability
#11
Katherine E McDonald, Nicole E Conroy, Carolyn I Kim, Emily J LoBraico, Ellis M Prather, Robert S Olick
Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation...
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27241870/knowledge-of-the-nigerian-code-of-health-research-ethics-among-biomedical-researchers-in-southern-nigeria
#12
Olubunmi A Ogunrin, Folasade Daniel, Victor Ansa
Responsibility for protection of research participants from harm and exploitation rests on Research Ethics Committees and principal investigators. The Nigerian National Code of Health Research Ethics defines responsibilities of stakeholders in research so its knowledge among researchers will likely aid ethical conduct of research. The levels of awareness and knowledge of the Code among biomedical researchers in southern Nigerian research institutions was assessed. Four institutions were selected using a stratified random sampling technique...
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/26994735/a-case-study-of-the-resources-and-functioning-of-two-research-ethics-committees-in-western-india
#13
Tiffany Chenneville, Lynette Menezes, Jayendrakumar Kosambiya, Rajendra Baxi
Assessing the resources and functioning of research ethics committees (RECs) in low-resource settings poses many challenges. We conducted a case study of two medical college RECs (A and B) in Western India utilizing the Research Ethics Committee Quality Assurance Self-Assessment Tool (RECQASAT) as well as in-depth interviews with representative members to evaluate REC effectiveness. REC A and B obtained 62% and 67% of allowable points on the RECQASAT. These scores together with findings from the in-depth interviews suggest the need for significant improvement in REC effectiveness particularly in the areas of membership and educational training, organizational aspects, recording minutes, communicating decisions, and REC resources...
December 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27887006/the-perceived-impact-of-trauma-focused-research-on-forensic-psychiatric-patients-with-lifetime-victimization-histories
#14
Ilvy Goossens, Tonia L Nicholls, Iris Torchalla, Johann Brink, Corine de Ruiter
This study examined the perceived costs, benefits, and motivations for participating in individual trauma-focused interviews among forensic psychiatric patients (N = 74). The majority of our participants were male, and 100% endorsed adverse childhood experiences (e.g., abuse, neglect) or exposure to potentially traumatic events (e.g., assault). Levels of posttraumatic avoidance (41.9%), reexperiencing (59.5%), and increased arousal (51.3%) were high. In line with previous studies, our findings suggest an overall positive research experience in this sample...
November 24, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27830644/-i-ve-gone-through-this-my-own-self-so-i-practice-what-i-preach-strategies-to-enhance-understanding-and-other-valued-outcomes-in-hiv-vaccine-trials-in-south-africa
#15
Catherine Slack, Siya Thabethe, Graham Lindegger, Limba Matandika, Peter A Newman, Philippa Kerr, Doug Wassenaar, Surita Roux, Linda-Gail Bekker
There has not been enough study of the processes by which site staff help participating community members and potential participants to understand complicated concepts for HIV vaccine trials. This article describes strategies reported in six focus group discussions with Community Advisory Board members, educators, and consent counselors at an active HIV vaccine trial site in South Africa. Thematic analysis identified a considerable range of strategies, and findings suggest that such staff do not only try to promote understanding of critical information but also try to build trust in communicated information, to respect cultural differences, and to promote voluntariness...
November 8, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28251864/typologies-of-altruistic-and-financial-motivations-for-research-participation
#16
Lisa J Chin, Jacqueline A Berenson, Robert L Klitzman
Questions arise concerning participants' motives in risky studies, such as HIV vaccine trials (HVTs). We interviewed in-depth 20 gay/bisexual men. Participants described both altruistic and nonaltruistic motives. Altruistic motivations emerged primarily, with nine typologies: (a) cultural, (b) community related, (c) familial, (d) religious, (e) professional, (f) political (e.g., HIV activism), (g) moral (e.g., making up for past wrongs), (h) existential (e.g., providing sense of meaning), and (i) other psychological (e...
October 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28251863/what-makes-an-investigator-qualified
#17
P Ethicist
No abstract text is available yet for this article.
October 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27630213/getting-it-right
#18
Alinne Z Barrera, Laura B Dunn, Alexandra Nichols, Sonia Reardon, Ricardo F Muñoz
Ethical principles in conducting technology-based research require effective and efficient methods of ensuring adequate informed consent. This study examined how well participants understood the informed consent form for an online postpartum depression trial. Pregnant women ( N = 1,179) who consented to the trial demonstrated an understanding of the purpose (86.1%) and procedures of the study (75.8%), and the minimal risks associated with answering sensitive questions online (79%). Almost all (99.6%) understood that psychological treatment was not offered...
October 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27613778/allocation-of-resources-to-communication-of-research-result-summaries
#19
Julie E Richards, Emmi Bane, Stephanie M Fullerton, Evette J Ludman, Gail Jarvik
Researchers and policymakers recommend communicating summary research results to biobank participants when feasible. To date, however, there have been few explorations of participant preferences for dedicating resources to this activity. Fifteen semi-structured interviews were conducted with participants of a genetic medicine biobank. Participants were interviewed by phone about their motivation for participation, and opinions about the allocation of resources to communicating summary results. De-identified transcripts were used for a directed content analysis...
October 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27646400/development-and-validation-of-the-biomedical-research-trust-scale-brts-in-english-and-spanish
#20
Sharon H Baik, Mariana Arevalo, Clement Gwede, Cathy D Meade, Paul B Jacobsen, Gwendolyn P Quinn, Kristen J Wells
This study developed and validated the Biomedical Research Trust Scale (BRTS), a 10-item measure of global trust in biomedical research, in English and Spanish (BRTS-SP). In total, 85 English- and 85 Spanish-speaking participants completed the BRTS or BRTS-SP, as well as measures of biobanking attitudes, self-efficacy, receptivity, and intentions to donate blood or urine. Results indicated the BRTS and BRTS-SP showed adequate internal consistency in both English and Spanish. In addition, greater levels of trust in biomedical research were significantly associated with greater self-efficacy, receptivity, attitudes, and intentions to donate blood and urine in English-speaking participants, and self-efficacy and intention to donate urine in Spanish-speaking participants...
September 19, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
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