journal
MENU ▼
Read by QxMD icon Read
search

Journal of Empirical Research on Human Research Ethics: JERHRE

journal
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/27887006/the-perceived-impact-of-trauma-focused-research-on-forensic-psychiatric-patients-with-lifetime-victimization-histories
#2
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/28007007/to-what-extent-do-risks-need-to-be-minimized
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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/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
#9
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/27646400/development-and-validation-of-the-biomedical-research-trust-scale-brts-in-english-and-spanish
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
journal
journal
41357
1
2
Fetch more papers »
Fetching more papers... Fetching...
Read by QxMD. Sign in or create an account to discover new knowledge that matter to you.
Remove bar
Read by QxMD icon Read
×

Search Tips

Use Boolean operators: AND/OR

diabetic AND foot
diabetes OR diabetic

Exclude a word using the 'minus' sign

Virchow -triad

Use Parentheses

water AND (cup OR glass)

Add an asterisk (*) at end of a word to include word stems

Neuro* will search for Neurology, Neuroscientist, Neurological, and so on

Use quotes to search for an exact phrase

"primary prevention of cancer"
(heart or cardiac or cardio*) AND arrest -"American Heart Association"