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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/27887006/the-perceived-impact-of-trauma-focused-research-on-forensic-psychiatric-patients-with-lifetime-victimization-histories
#1
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
#2
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/27646401/are-leadership-and-management-essential-for-good-research-an-interview-study-of-genetic-researchers
#3
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...
September 19, 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
#4
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
https://www.readbyqxmd.com/read/27638866/-doing-trust-how-researchers-conceptualize-and-enact-trust-in-their-research-practice
#5
Marilys Guillemin, Lynn Gillam, Emma Barnard, Paul Stewart, Hannah Walker, Doreen Rosenthal
Trust in research is important but not well understood. We examine the ways that researchers understand and practice trust in research. Using a qualitative research design, we interviewed 19 researchers, including eight researchers involved in Australian Indigenous research. The project design focused on sensitive research including research involving vulnerable participants and sensitive research topics. Thematic analysis was used to analyze the data. We found that researchers' understanding of trust integrates both the conceptual and concrete; researchers understand trust in terms of how it relates to other similar concepts and how they practice trust in research...
September 16, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27630213/getting-it-right-ensuring-informed-consent-for-an-online-clinical-trial
#6
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...
September 14, 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-biobank-participant-perspectives
#7
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...
September 8, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27580742/an-evaluation-of-the-middle-east-research-training-initiative-tool-in-assessing-effective-functioning-of-research-ethics-committees-experience-with-a-kenyan-rec
#8
Walter Jaoko, Elizabeth Bukusi, Arlene M Davis
The effective functioning of a research ethics committee (REC) can be evaluated using self-assessment tools. The Middle East Research Ethics Training Initiative (MERETI) tool can be used by one member, typically the Chair, to score an REC. The consistency of these scores across several members of an REC has never been evaluated. This study examined whether results would be consistent irrespective of who conducts the assessment. One REC's effective functioning was assessed by several members (n = 13). The Chair's scores were compared with scores of other members in relation to their duration of REC membership, research ethics training, gender, and employer's institutional affiliation to the REC...
August 31, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27552841/the-challenge-of-community-representation-lessons-from-six-hiv-clinical-research-community-advisory-boards-in-uganda
#9
Carlton Lawrence, Kearsley Stewart
Although community advisory boards (CABs) are widely used in clinical research, there is limited data regarding their composition and structure, especially in Africa. Our research provides the first qualitative study of the membership practices, selection methods, and qualifications of the six major HIV research centers that comprise the Ugandan National CAB Network (UNCN). Researchers conducted interviews (n = 45) with CAB members and research liaisons at each of the sites. While selection practices and demographics varied between the sites, all six CABs exclusively followed a broad community membership model...
August 23, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27534590/ethical-considerations-in-research-participation-virality
#10
Carol Ellis-Barton
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...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27534589/description-and-evaluation-of-the-research-ethics-review-process-in-japan-proposed-measures-for-improvement
#11
Mika Suzuki, Keiko Sato
Research Ethics Committees (RECs) are designed to protect human subjects in research. It is essential to recognize whether the RECs are achieving this goal. Several studies have reported on RECs; however, detailed data regarding the quality of research protocols and the review process of RECs have not been reported in Japan. We examine research protocols reviewed by RECs and the review processes at three institutions using a novel checklist we developed. The data show that approximately half of all examined protocols lacked a clearly written "Background" section that defines the study rationale and design...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27534588/do-n-of-1-trials-need-irb-review
#12
Ruiqi Cen, Azad Hussain, Kirk J Pak, Geoffrey Mitchell, Jane Nikles, Stephanie Gaudreau, Lydia A Bazzano, Joseph L Breault
There is no standard policy regarding the regulatory or institutional approval of N-of-1 trials in the United States. The objective of this study was to examine whether institutional review boards (IRBs) accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP) consider N-of-1 trials as meeting the definition of human subjects research (45CFR46.102) and requiring IRB approval. A questionnaire was distributed via email to 170 AAHRPP-accredited IRBs in the United States...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27534587/did-i-tell-you-that-ethical-issues-related-to-using-computational-methods-to-discover-non-disclosed-patient-characteristics
#13
Kenrick D Cato, Walter Bockting, Elaine Larson
Widespread availability of electronic health records coupled with sophisticated statistical methods offer great potential for a variety of applications for health and disease surveillance, developing predictive models and advancing decision support for clinicians. However, use of "big data" mining and discovery techniques has also raised ethical issues such as how to balance privacy and autonomy with the wider public benefits of data sharing. Furthermore, electronic data are being increasingly used to identify individual characteristics, which can be useful for clinical prediction and management, but were not previously disclosed to a clinician...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27387457/the-influence-of-education-on-public-trust-and-consent-preferences-with-residual-newborn-screening-dried-blood-spots
#14
Erin Rothwell, Bob Wong, Rebecca A Anderson, Jeffrey R Botkin
The objectives of this study were to evaluate the impact of educational interventions during prenatal care on public trust for newborn screening and consent preferences for the retention and use of leftover newborn screening dried blood spots. Women who were 30 to 36 weeks pregnant were recruited, and outcomes were measured by telephone survey 2 to 4 weeks postpartum (n = 901). Approximately 40% of the sample chose the opt-out approach but those who watched educational interventions delivered during prenatal care were significantly associated with higher levels of trust and support for an opt-out consent approach...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27381010/participants-accounts-on-their-decision-to-join-a-cohort-study-with-an-attached-biobank-a-qualitative-content-analysis-study-within-two-german-studies
#15
Hélène Nobile, Manuela M Bergmann, Jennifer Moldenhauer, Pascal Borry
Reliable participation and sustained retention rates are crucial in longitudinal studies involving human subjects and biomaterials. Understanding the decision to enroll is an essential step to develop adequate strategies promoting long-term participation. Semi-structured interviews were implemented with newly recruited and long-term participants randomly drawn from two ongoing longitudinal studies with a biobank component in Germany. Iterative qualitative content analysis was applied to the transcribed interviews...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27368311/developing-a-framework-for-evaluating-ethical-outcomes-of-good-participatory-practices-in-tb-clinical-drug-trials
#16
Kathleen M MacQueen, Natalie T Eley, Mike Frick, Laia Ruiz Mingote, Alicia Chou, Stephanie S Seidel, Stacey Hannah, Carol Hamilton
Good Participatory Practice Guidelines for TB Drug Trials (GPP-TB) were issued in 2012, based on similar guidelines for HIV prevention and reflecting growing acceptance of the importance of community engagement and participatory strategies in clinical research. Though the need for such strategies is clear, evaluation of the benefits and burdens are needed. Working with a diverse group of global TB stakeholders including advocates, scientists, and ethicists, we used a Theory of Change approach to develop an evaluation framework for GPP-TB that includes a clearly defined ethical goal, a set of powerful strategies derived from GPP-TB practices for achieving the goal, and outcomes connecting strategies to goal...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27353243/serious-adverse-events-reports-analysis-and-outcome-of-review-by-an-institutional-ethics-committee-of-a-tertiary-care-hospital-in-mumbai-india
#17
Raakhi K Tripathi, Padmaja A Marathe, Sandip V Kapse, Yashashri C Shetty, Sandhya K Kamat, Urmila M Thatte
The Indian regulations for clinical trials were amended in January 2013 regarding reporting time lines, relatedness, and compensation for Serious Adverse Events (SAEs). Our study assessed the extent of regulatory compliance in reporting SAEs to the Institutional Ethics Committee (IEC) over 4 years (January 2009-January 2013) before and 18 months after (February 2013-July 2014) the amended regulations. SAE reports were studied retrospectively for reporting time lines, relatedness, compensation, and IEC response before and after the law revision...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27329533/informed-consent-uninformed-participants-shortcomings-of-online-social-science-consent-forms-and-recommendations-for-improvement
#18
Evan K Perrault, Samantha A Nazione
As informed consent forms continue to lengthen, are these lengthening forms helping to create better informed participants? The aim of this research was to determine whether the length of consent forms affected reading frequency and comprehension, and to provide recommendations on how to improve consent forms in the social sciences so they are more likely to be read. A quasi-experiment was conducted using actual consent forms at two liberal arts schools, one requiring a long form (463 words, n = 73) and one requiring a shorter form (236 words, n = 57)...
July 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/27307419/high-school-youth-s-reactions-to-participating-in-mixed-methodological-dating-violence-research
#19
Katie M Edwards, Ellen E Haynes, Kara Anne Rodenhizer-Stämpfli
The present study used a sample of high school youth (N = 218) and a mixed-methodological research design to examine high school students' reactions to participating in focus groups and completing surveys that inquired about dating violence (DV). Results showed that showed that 1.5% (n = 3) of the youth regretted participating in the study and 6% (n = 12) were upset by the study questions; being upset was attributed to personal experiences with DV and being disturbed by peers' responses during the focus group...
July 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
#20
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...
June 15, 2016: Journal of Empirical Research on Human Research Ethics: JERHRE
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