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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://read.qxmd.com/read/31104551/a-rare-opportunity-examining-the-experience-of-a-new-institutional-review-board
#1
Linda Parreco, Lisa Rooney, Sharon Hampp, Amanda Brown, Lori Minasian
The process of creating a new Institutional Review Board (IRB) or Research Ethics Committee (REC) presents many challenges; however, little has been published to describe this experience. Thus, many questions about creating a new IRB/REC and the challenges they face remain. The establishment of a new federal-wide single IRB provided a rare opportunity to describe these experience and outcomes. A census of the activity and outcomes of this new board is reported for its first 3 years of operation: The convened board approved 50 protocols, required an average of 93...
May 20, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/31092099/maintaining-distance-and-staying-immersed-practical-ethics-in-an-underresourced-new-born-unit
#2
Joyline Jepkosgei, Jacinta Nzinga, Bobbie Farsides, Vicki Marsh, Sassy Molyneux, Jacob McKnight
No abstract text is available yet for this article.
May 16, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/31068049/attitudes-toward-genetics-and-genetic-testing-among-participants-in-the-jackson-and-framingham-heart-studies
#3
Katherine W Saylor, Lynette Ekunwe, Donna Antoine-LaVigne, Deborah E Sellers, Sarah McGraw, Daniel Levy, Greta Lee Splansky, Steven Joffe
Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study ( n = 960), Framingham Heart Study ( n = 955), and Framingham Heart Study-Omni Cohort ( n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3-5/5). Participants were also asked to select words to describe their attitudes toward genetics...
May 8, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/31046584/parents-perspectives-on-decisions-to-participate-in-pediatric-clinical-research-results-from-a-focus-group-study-with-laypeople
#4
Krista Tromp, Suzanne van de Vathorst
Knowing why parents decide to consent or dissent to participation of their child in pediatric clinical research is essential to further the ethical debate concerning pediatric research. We performed this qualitative focus group study with 16 parents from the Dutch general public to explore their perspectives on decisions to participate in pediatric clinical research. Group discussion revealed the following: Parents conflate clinical research and clinical care, they do not grasp the trajectory of pediatric drug development, their protectiveness matches current research guidelines, and benefit for their child is the most important factor in their decision...
May 3, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/31018813/decades-of-doing-indigenous-women-academics-reflect-on-the-practices-of-community-based-health-research
#5
Kim Anderson, Jaime Cidro
It has been several decades since the establishment of Ownership, Control, Access, and Possession (OCAPĀ®) and the proliferation of work on Indigenous research ethics. Most of this dialogue emerged because of egregious health research practices in Indigenous communities and has since taken a foothold across all disciplines. Community-engaged research in Indigenous communities is challenging. It is important to reflect on some of the early ethical and methodological debates, which shape how we currently work with communities...
April 25, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/31018753/australian-mental-health-consumer-and-carer-perspectives-on-ethics-in-adult-mental-health-research
#6
Alyssa R Morse, Owen Forbes, Bethany A Jones, Amelia Gulliver, Michelle Banfield
Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives on research ethics procedures was conducted in two interlinked stages: (a) a discussion forum with consumers, carers, and lived-experience researchers and (b) in-depth interviews with consumers and carers...
April 25, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30957623/commentary-on-measuring-the-quality-and-performance-of-institutional-review-boards
#7
Peter Cleaton-Jones
This commentary uses personal research ethics experience in South Africa to consider the position of Tsan who recommends a consortium to develop common metrics / performance indicators for determining quality of RECs / IRBs. Terms such as performance, quality and throughput need clarification in research metrics before effective metrics may be useful.
April 8, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30957620/whatever-happened-to-short-informed-consent-documents
#8
P Ethicist
No abstract text is available yet for this article.
April 8, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30943835/assessing-the-efficacy-of-a-training-intervention-to-reduce-acceptance-of-questionable-research-practices-in-psychology-graduate-students
#9
Donald F Sacco, Mitch Brown
We designed and tested the efficacy of a 1-hr training session to mitigate endorsement of questionable research practices (QRPs), research practices that raise ethical concerns and are detrimental to reproducible science, in psychology graduate students. We assessed attitudes toward QRPs 1 week prior to the training, 1 week following the training, and at 2-month follow-up. Participants reported QRPs as less ethically defensible 1 week following the intervention compared with 1 week prior, with attitudes at 2-month follow-up falling in between these time points...
April 4, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30896324/the-contribution-of-ethics-review-to-protection-of-human-participants-comment-on-measuring-the-quality-and-performance-of-institutional-review-boards
#10
Christine Grady
Measuring the quality and performance of IRBs requires clarity about what IRBs are supposed to do. Although many agree that IRBs are supposed to protect the rights and welfare of human subjects, exactly how review by an IRB contributes to protection is not always clear. Originally, ethics review was instituted as a way to check the interests, possible conflicts, and enthusiasm of investigators whose relationship to participants is different from physicians' relationship to patients. IRB performance might include evaluating how well IRBs do this...
March 21, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30894051/improving-compliance-with-institutional-review-board-continuing-review-requirements
#11
Min-Fu Tsan, Yen Nguyen
Continuing review of ongoing research is one way by which institutional review boards (IRBs) ensure protection of human subjects. Among the 25 Department of Veterans Affairs (VA) human research protection program performance metrics collected annually since 2010, lapse in IRB continuing reviews had the highest noncompliance rate. In 2013, 10 facilities with lapse rates higher than the VA national average for 3 consecutive years from 2011 to 2013 implemented remedial action plans. Using data from 2011 through 2018, we demonstrated that 70% of these facilities' lapse rates remain significantly improved...
March 20, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30866724/barriers-and-facilitators-to-obtaining-informed-consent-in-a-critical-care-pediatric-research-ward-in-southern-malawi
#12
Lucinda Manda-Taylor, Alice Liomba, Terrie E Taylor, Kristan Elwell
Informed consent is an ethical requirement in clinical research. Obtaining informed consent is challenging in resource-constrained settings. We report results of a formative qualitative study that examined factors that facilitate and hinder informed consent for clinical research among critically ill children in Malawi. We argue that truly informed consent in a pediatric intensive care unit (PICU) is challenged by parental distress, time constraints when balancing care for critically ill patients with research-related tasks, and social hierarchies and community mistrust toward certain research procedures...
April 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30866723/variability-in-institutional-board-review-for-a-multisite-assessment-of-resident-professionalism
#13
Judith A Linden, Jeffrey I Schneider, Andrea Cotter, Sabrina Drexel, Emily Frosch, Niels D Martin, Colleen Canavan, Matthew Holtman, Patricia M Mitchell, James A Feldman
Residents serve as both trainees and employees and can be considered potentially vulnerable research participants. This can lead to variation in the institutional review board (IRB) review. We studied sites participating in the Assessment of Professional Behaviors Study sponsored by the National Board of Medical Examiners (2009-2011). Of the 19 sites, all but one were university affiliated. IRB review varied; 2/19 did not submit to a local IRB, 4/17 (23%) were exempt, 11/17 (65%) were expedited, and 2/17 (12%) required full Board review; 12/17 (71%) required written informed consent...
April 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30866722/measuring-irb-regulatory-compliance-development-testing-and-use-of-the-national-cancer-institute-start-tool
#14
Lisa Rooney, Laura Covington, Andrea Dedier, Birdena Samuel
Institutional review boards (IRBs) have been criticized for overstepping their authority by requiring research protocols to meet requirements that go beyond regulatory approval criteria. The youngest National Cancer Institute (NCI) central IRB (CIRB), the Cancer Prevention and Control (CPC) CIRB, was studied with the NCI Stipulation Analysis Review Tool (StART), which categorized 1,049 stipulations in 51 determination letters covering 30 approved protocols. NCI StART reduced the potential for subjective uncertainty in assessing the wide range of content in the stipulations...
April 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30866721/inclusion-of-marginalized-groups-and-communities-in-global-health-research-priority-setting
#15
Bridget Pratt
Community engagement is gaining prominence in global health research. But community members, especially those from groups and communities that are considered disadvantaged and marginalized, rarely have a say in the agendas and priorities of the research projects that aim to help them. This article explores how to achieve their inclusion in priority-setting for global health research projects. A total of 29 in-depth interviews and one focus group were undertaken with researchers, research ethicists, community engagement practitioners, and community-based organization staff...
April 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30735083/children-in-social-research-do-higher-payments-encourage-participation-in-riskier-studies
#16
Stephanie Taplin, Jenny Chalmers, Bianca Hoban, Morag McArthur, Tim Moore, Anne Graham
The MESSI (Managing Ethical Studies on Sensitive Issues) study used hypothetical scenarios, presented via a brief online survey, to explore whether payment amounts influenced Australian children and young people to participate in social research of different sensitivity. They were more likely to participate in the lower sensitivity study than in the higher at all payment levels (A$200 prize draw, no payment, $30, or $100). Offering payments to children and young people increased the likelihood that they would agree to participate in the studies and, in general, the higher the payments, the higher the likelihood of their participating...
February 8, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30585505/exploring-ethical-concerns-about-human-challenge-studies-a-qualitative-study-of-controlled-human-malaria-infection-study-participants-motivations-and-attitudes
#17
Stephanie A Kraft, Devan M Duenas, James G Kublin, Kelly J Shipman, Sean C Murphy, Seema K Shah
Controlled human malaria infection (CHMI) studies deliberately infect healthy participants with malaria to test interventions faster and more efficiently. Some argue the study design and high payments offered raise ethical concerns about participants' understanding of risks and undue inducement. We conducted baseline and exit interviews with 16 CHMI study participants to explore these concerns. Participants described themes including decision-making tension with friends and family, mixed motivations for participating, low study risks but high burdens, fair compensation, sacrificing values, deceiving researchers, and perceived benefits...
February 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30678521/research-ethics-committees-oversight-of-biomedical-research-in-south-africa-a-thematic-analysis-of-ethical-issues-raised-during-ethics-review-of-non-expedited-protocols
#18
Blessing Silaigwana, Douglas Wassenaar
In South Africa, biomedical research cannot commence until it has been reviewed and approved by a local research ethics committee (REC). There remains a dearth of empirical data on the nature and frequency of ethical issues raised by such committees. This study sought to identify ethical concerns typically raised by two South African RECs. Meeting minutes for 180 protocols reviewed between 2009 and 2014 were coded and analyzed using a preexisting framework. Results showed that the most frequent queries involved informed consent, respect for participants, and scientific validity...
January 24, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30616432/japanese-students-do-see-the-value-of-asking-about-child-abuse-and-trauma-in-the-research-setting
#19
Carolyn B Allard, Elizabeth Straus, Mai I Ra, Katie B Thomas, Reiko Kawamura, Yukari Tosaka
Despite evidence regarding the impact of childhood abuse perpetrated by close others, or high betrayal trauma, a number of barriers continue to impede research efforts, including concerns that research may do more harm than good. Research conducted with Western samples has indicated that contrary to such concerns, participants rate the benefit of participating in trauma research as outweighing costs, even when they have a history of high betrayal trauma. Certain non-Western values, such as interpersonal harmony, could play a role in perceptions regarding trauma research participation...
January 7, 2019: Journal of Empirical Research on Human Research Ethics: JERHRE
https://read.qxmd.com/read/30541368/of-parachutes-and-participant-protection-moving-beyond-quality-to-advance-effective-research-ethics-oversight
#20
Holly Fernandez Lynch, Stuart Nicholls, Michelle N Meyer, Holly A Taylor
There are several reasons to believe that Institutional Review Boards (IRBs) and Human Research Protection Programs (HRPPs) contribute to ethical research and the protection of research participants, but there are also important reasons to interrogate this belief. Determining whether IRBs and HRPPs "work" requires empirical evaluation of whether and how well they actually achieve what they were designed to do. In other words, it is critical to examine their outcomes and not only their procedures and structures...
December 12, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
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