journal
MENU ▼
Read by QxMD icon Read
search

Journal of Empirical Research on Human Research Ethics: JERHRE

journal
https://www.readbyqxmd.com/read/29037106/standard-versus-simplified-consent-materials-for-biobank-participation-differences-in-patient-knowledge-and-trial-accrual
#1
Sarah B Garrett, Marie Murphy, James Wiley, Daniel Dohan
Replacing standard consent materials with simplified materials is a promising intervention to improve patient comprehension, but there is little evidence on its real-world implementation. We employed a sequential two-arm design to compare the effect of standard versus simplified consent materials on potential donors' understanding of biobank processes and their accrual to an active biobanking program. Participants were female patients of a California breast health clinic. Subjects from the simplified arm answered more items correctly ( p = ...
October 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28984168/perceptions-of-equipoise-risk-benefit-ratios-and-otherwise-healthy-volunteers-in-the-context-of-early-phase-hiv-cure-research-in-the-united-states-a-qualitative-inquiry
#2
Karine Dubé, Lynda Dee, David Evans, Laurie Sylla, Jeff Taylor, Brandon Brown, Veronica Miller, Amy Corneli, Asheley Skinner, Sandra B Greene, Joseph D Tucker, Stuart Rennie
Early-phase HIV cure research is conducted against a background of highly effective antiretroviral therapy, and involves risky interventions in individuals who enjoy an almost normal life expectancy. To explore perceptions of three ethical topics in the context of HIV cure research-(a) equipoise, (b) risk-benefit ratios, and (c) "otherwise healthy volunteers"-we conducted 36 in-depth interviews (IDIs) with three groups of purposively selected key informants: clinician-researchers ( n = 11), policy-makers and bioethicists ( n = 13), and people living with HIV (PLWHIV; n = 12)...
October 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28905673/the-practice-of-research-ethics-in-lebanon-and-qatar-perspectives-of-researchers-on-informed-consent
#3
Rima Nakkash, Yara Qutteina, Catherine Nasrallah, Katharine Wright, Leila El-Alti, Jihad Makhoul, Khalid Al-Ali
Informed consent requirements for conducting research with human participants are set by institutional review boards (IRBs) following established guidelines. Despite this, researchers continue to face challenges in seeking and obtaining informed consent. This study discusses researchers' views of such problems in Lebanon and Qatar, which vary in research regulation. We conducted in-depth interviews with 52 academic researchers from various fields of research in both countries and analyzed them using thematic analysis...
September 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28831844/ethics-regulation-in-social-computing-research-examining-the-role-of-institutional-review-boards
#4
Jessica Vitak, Nicholas Proferes, Katie Shilton, Zahra Ashktorab
The parallel rise of pervasive data collection platforms and computational methods for collecting, analyzing, and drawing inferences from large quantities of user data has advanced social computing research, investigating digital traces to understand mediated behaviors of individuals, groups, and societies. At the same time, methods employed to access these data have raised questions about ethical research practices. This article provides insights into U.S. institutional review boards' (IRBs) attitudes and practices regulating social computing research...
August 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
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
#5
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
#6
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/28728497/the-significance-of-benefit-perceptions-for-the-ethics-of-hiv-research-involving-adolescents-in-kenya
#7
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...
October 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
#8
Lex M Bouter
No abstract text is available yet for this article.
October 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...
October 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
#10
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...
October 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/28758521/effectiveness-of-human-research-protection-program-performance-measurements
#11
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
#12
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/28728496/a-missing-piece-in-clinical-trial-inspections-in-latin-america-interviews-with-research-subjects-in-peru
#13
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/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
#14
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/28691559/ethics-and-science-in-the-participatory-era-a-vignette-based-delphi-study
#15
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
#16
(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/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
#17
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
#18
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
#19
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/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
#20
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
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"