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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/28818009/transparency-of-biobank-access-in-canada-an-assessment-of-industry-access-and-the-availability-of-information-on-access-policies-and-resulting-research
#1
Shannon G Gibson, Renata E Axler, Trudo Lemmens
A key issue impacting public trust in biobanks is how these resources are utilized, including who is given access to biobank data and samples. To assess the conditions under which researchers are given access to Canadian biobanks, we reviewed websites and contacted Canadian biobanks to determine the availability of information on access policies and procedures; research resulting from access biobank data and samples; and conditions on private industry access to biobanks. We also conducted expert interviews with key Canadian stakeholders ( n = 11) to obtain their perspectives on biobank transparency and access policies...
August 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28814135/spanish-validation-of-the-macarthur-competence-assessment-tool-for-clinical-research-interview-for-assessing-patients-mental-capacity-to-consent-to-clinical-research
#2
Beatriz S Baón-Pérez, Ignacio Álvarez-Marrodán, Mercedes Navío-Acosta, Ernesto J Verdura-Vizcaíno, Tirso Ventura-Faci
The aim of the study was to assess a Spanish adaptation of a method that determines the categorical capacity status of potential participants in research projects. The sample consisted of 120 subjects (40 general medicine inpatients, 40 psychiatric inpatients, and 40 healthy controls). The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) interview and Mini-Mental State Examination (MMSE) were used. A feasibility study was carried out and reliability and validity calculations were made against the expert-judgment gold standard...
August 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28758521/effectiveness-of-human-research-protection-program-performance-measurements
#3
Min-Fu Tsan, Yen Nguyen
We analyzed human research protection program performance metric data of all Department of Veterans Affairs research facilities obtained from 2010 to 2016. Among a total of 25 performance metrics, 21 (84%) showed improvement, four (16%) remained unchanged, and none deteriorated during the study period. The overall improvement from these 21 performance metrics was 81.1% ± 18.7% (mean ± SD), with a range of 30% to 100%. The four performance metrics that did not show improvement all had initial noncompliance/incidence rates of <1...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28728498/variations-in-unrealistic-optimism-between-acceptors-and-decliners-of-early-phase-cancer-trials
#4
Lynn A Jansen, Daruka Mahadevan, Paul S Appelbaum, William M P Klein, Neil D Weinstein, Motomi Mori, Catherine Degnin, Daniel P Sulmasy
Research has found that patient-subjects in early phase cancer trials exhibit unrealistic optimism regarding the risks and possible benefits of trial participation. Unrealistic optimism is associated with therapeutic misconception and failures to appreciate research-related information. This is the first study to assess whether those who decline to participate in these trials also exhibit unrealistic optimism. It is also the first study to assess whether there are significant differences in appreciation of research-related risks/benefits and therapeutic misconception between these two groups...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28728497/the-significance-of-benefit-perceptions-for-the-ethics-of-hiv-research-involving-adolescents-in-kenya
#5
Stuart Rennie, Allison K Groves, Denise Dion Hallfors, Bonita J Iritani, Fredrick S Odongo, Winnie K Luseno
Assessment of benefits is traditionally regarded as crucial to the ethical evaluation of research involving human participants. We conducted focus group discussions (FGDs) with health and other professionals engaged with adolescents, caregivers/parents, and adolescents in Siaya County, Kenya, to solicit opinions about appropriate ways of conducting HIV research with adolescents. Our data revealed that many focus group participants have a profoundly positive conception of participation in health research, including studies conferring seemingly few benefits...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28728496/a-missing-piece-in-clinical-trial-inspections-in-latin-america-interviews-with-research-subjects-in-peru
#6
Gabriela E Minaya, Duilio J Fuentes-Delgado, Antonio Ugalde, Núria Homedes
Most regulatory agencies conduct clinical trial (CT) site inspections, but the experiences and behaviors of the research subjects and their knowledge of the rights and obligations that ensue from participating in a CT are seldom explored. The authors assessed the technical feasibility of incorporating interviews with participants in CT inspections. This article analyzes the responses of 13 CT participants, 14% ( n = 96) of those included in three tuberculosis (TB) CTs. Participants did not object to being interviewed and provided information not obtained during regular inspections...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28707496/invited-commentary-on-investigating-the-reliability-and-factor-structure-of-kalichman-s-survey-2-research-misconduct-questionnaire
#7
Lex M Bouter
No abstract text is available yet for this article.
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28705032/response-to-commentary-investigating-the-reliability-and-factor-structure-of-kalichman-s-survey-2-research-misconduct-questionnaire-a-post-hoc-analysis-among-biomedical-doctoral-students-in-scandinavia
#8
Søren Holm, Bjørn Hofmann
No abstract text is available yet for this article.
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28697643/parental-perceptions-about-informed-consent-assent-in-pediatric-research-in-jordan
#9
Omar F Khabour, Mahmoud A Alomari, Nihaya A Al-Sheyab
The informed consent/assent process during enrollment in pediatric research is integral to protecting children from possible harm. Here we explored parents' perceptions about the informed consent/assent process in Jordan. Therefore, focus group interviews were conducted that focused on the importance of consent/assent, the quality of the information provided during consent process, and the parents' perceptions toward written/verbal informed consent. Content thematic analysis approach was adopted in the transcription and translation processes of the interviews...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28691559/ethics-and-science-in-the-participatory-era-a-vignette-based-delphi-study
#10
Elizabeth Bromley, Lisa Mikesell, Dmitry Khodyakov
Participatory researchers rely on relationship-based ethical considerations to address ethical challenges, but little is known about how these considerations shape day-to-day decision-making. We presented vignettes describing ethical dilemmas to health researchers with varying degrees of experience in participatory research in an online modified-Delphi panel. Panelists rated potential solutions to dilemmas and provided rationales for choosing solutions in text boxes and discussion boards. Panelists agreed on a preferred solution for three of five vignettes...
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28691558/the-science-of-meetings-practical-ethicist
#11
(no author information available yet)
No abstract text is available yet for this article.
July 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28707501/investigating-the-reliability-and-factor-structure-of-kalichman-s-survey-2-research-misconduct-questionnaire-a-post-hoc-analysis-among-biomedical-doctoral-students-in-scandinavia
#12
Søren Holm, Bjørn Hofmann
A precondition for reducing scientific misconduct is evidence about scientists' attitudes. We need reliable survey instruments, and this study investigates the reliability of Kalichman's "Survey 2: research misconduct" questionnaire. The study is a post hoc analysis of data from three surveys among biomedical doctoral students in Scandinavia (2010-2015). We perform reliability analysis, and exploratory and confirmatory factor analysis using a split-sample design as a partial validation. The results indicate that a reliable 13-item scale can be formed (Cronbach's α = ...
June 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28664767/health-research-ethics-between-ethics-codes-and-culture
#13
Alexandra Gheondea-Eladi
This article is meant to describe and analyze some of the ethical difficulties encountered in a pilot research on treatment decisions of patients with chronic viral hepatitis C infection in Romania. It departs from an overview of the main ethics codes, and it shows that social health research on patients falls in between institutional codes of ethics. Furthermore, the article moves on to analyze so-called "important moments" of empirical research, such as the implementation of the ethical protocol, dealing with informal payments and with information on shady actions, as well as requests of information from interviewed patients and deciding when and if to breach confidentiality...
June 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28660807/factors-influencing-iacuc-decision-making-who-leads-the-discussions
#14
Jerald Silverman, Charles W Lidz, Jonathan Clayfield, Alexandra Murray, Lorna J Simon, Louise Maranda
Decisions about the appropriate use of animals in research are largely made by Institutional Animal Care and Use Committees (IACUCs). Several commentators claim that scientists exert excessive influence on IACUC decisions. We studied 87 protocol reviews from 10 IACUCs to assess whether any group of participants appeared to dominate the protocol discussions. Audio recordings of the meetings were coded to capture the topics of the discussions. We found that animal research scientists made the largest total number of topic mentions while community members made the fewest...
June 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28593817/the-meanings-of-helping-an-analysis-of-cystic-fibrosis-patients-reasons-for-participating-in-biomedical-research
#15
Emily Christofides, Karla Stroud, Diana Elizabeth Tullis, Kieran O'Doherty
Research participants often report wanting to help as a reason for participation, but who they want to help and why is rarely explored. We examined meanings associated with helping among 21 adults with cystic fibrosis (CF)-a group with high participation in research. Meanings included helping to advance research, helping others with CF, helping as their job, helping themselves, helping because they are special, and helping to give back. While some meanings were primarily oriented toward helping others, some also involved hoping for benefits for oneself, and some included feelings of responsibility...
June 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28637395/book-review-bioethics-a-philosophical-introduction-holland-s-2017-bioethics-a-philosophical-introduction-cambridge-uk-polity-press-273-pp-27-36-paper-isbn-978-0-7456-9059-5
#16
Heidi Matisonn
No abstract text is available yet for this article.
July 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28434393/barriers-and-strategies-related-to-qualitative-research-on-genetic-ancestry-testing-in-indigenous-communities
#17
Jessica W Blanchard, Gloria Tallbull, Chantelle Wolpert, Jill Powell, Morris W Foster, Charmaine Royal
Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways...
July 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28412874/effects-of-regulatory-support-services-on-institutional-review-board-turnaround-times
#18
Pankaja Desai, Priyanka Nasa, Jackie Soo, Cunhui Jia, Michael L Berbaum, James H Fischer, Timothy P Johnson
We evaluated how regulatory support services provided by University of Illinois at Chicago's Center for Clinical and Translational Science may reduce Institutional Review Board (IRB) turnaround times. IRB applications were categorized by receipt of any regulatory support and amount of support received. Turnaround time included total turnaround time, time for IRB review, and time for investigators to modify protocols. There were no differences in any turnaround times for supported versus nonsupported applications...
July 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28558484/confidence-of-irb-rec-members-in-their-assessments-of-human-research-risk-a-study-of-irb-rec-decision-making-in-action
#19
Frederick Grinnell, John Z Sadler, Victoria McNamara, Kristen Senetar, Joan Reisch
Understanding how institutional review boards/research ethics committees (IRBs/RECs) perform risk/benefit assessment is important to help improve their function. In environmental ethics, uncertainty about potential outcomes and the precautionary principle play important roles in regulatory oversight but have received little attention in the context of human research ethics. We carried out an empirical study to gain insight into uncertainty by asking IRB/REC members about confidence in their risk assessments immediately after discussion of new protocols under review...
May 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28535711/applications-for-research-concerning-fetal-or-placental-tissue-and-expected-institutional-review-board-responses
#20
Lynn Borgatta, David Kaufman, Judith Parsells Kelly, David Babaian, Mary Banks
Proposals for research concerning fetal and/or placental tissue may be refused institutional review board (IRB) review, effectively preventing the research from occurring. We conducted an anonymous electronic survey of IRB chairs to determine their assessment of the likely response to research projects using fetal/placental tissue obtained from various procedures. We found that proposals concerning tissue obtained from diagnostic procedures or miscarriage were anticipated to be considered at most institutions...
May 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
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