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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/29243548/readability-of-human-subjects-training-materials-for-research
#1
Kristie B Hadden, Latrina Prince, Laura James, Jennifer Holland, Christopher R Trudeau
Institutions are required to ensure that persons involved in human subjects research receive appropriate human subjects protections training and education. Several organizations use the Collaborative Institutional Training Initiative (CITI) program to fulfill training requirements. Most researchers find the CITI program too complex for community members who collaborate with researchers. This study aimed to determine the readability of CITI modules most frequently used in community-based participatory research (CBPR)...
December 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29226747/examining-data-repository-guidelines-for-qualitative-data-sharing
#2
Alison L Antes, Heidi A Walsh, Michelle Strait, Cynthia R Hudson-Vitale, James M DuBois
Qualitative data provide rich information on research questions in diverse fields. Recent calls for increased transparency and openness in research emphasize data sharing. However, qualitative data sharing has yet to become the norm internationally and is particularly uncommon in the United States. Guidance for archiving and secondary use of qualitative data is required for progress in this regard. In this study, we review the benefits and concerns associated with qualitative data sharing and then describe the results of a content analysis of guidelines from international repositories that archive qualitative data...
December 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29226746/what-can-irbs-learn-from-cabs-a-qualitative-analysis-of-the-experiences-of-recruitment-and-training-of-nonscientist-members-on-research-review-boards
#3
Stephanie Solomon Cargill
Governments, funders, and institutional policies increasingly encourage and even mandate the involvement of nonscientists in the ethical review of research, most famously in institutional review boards (IRBs), but also on community advisory boards (CABs) and other committees that contribute to research governance. In spite of these requirements, few have examined how different factors such as recruitment strategies, training, and different qualifications shape the contributions of nonscientists to the research enterprise...
December 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29226745/management-of-adolescent-parent-dyads-discordance-for-willingness-to-participate-in-a-reproductive-health-clinical-trial
#4
Jenny K R Francis, Lauren Dapena Fraiz, Ariel M de Roche, Marina Catallozzi, Carmen Radecki Breitkopf, Susan L Rosenthal
The objective of this study is to understand the resolution of discordance between adolescent-parent dyads about participation in research. Adolescent (14-17 years) and parent dyads were recruited from NYC pediatric clinics to assess attitudes toward research participation. A subset of dyads participated in videotaped discussions about participation in a hypothetical study. Videos from dyads that held strongly discordant opinions about participation ( n = 30) were content-coded and analyzed using a thematic framework approach...
December 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29179626/reply-to-commentary-are-hiv-infected-candidates-for-participation-in-risky-cure-related-studies-otherwise-healthy
#5
Karine Dubé, Laurie Sylla, Lynda Dee
We respond to Eyal et al.'s commentary focusing on how people living with HIV participating in HIV cure-related studies are defined. We argue that the types of participants enrolled in research cannot be dissociated from the study interventions, the types of anticipated risks, and the background standard of care. As the field of HIV cure research advances, more nuance and granularity will be needed to define research criteria and acceptable risk/benefit ratios for cure study participants, as well as specific tiered protocol designs that serve to protect various participant populations from untoward risks, especially in very early phase research with interventions known to have potentially serious toxicities...
November 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29179625/the-ethics-of-health-care-delivery-in-a-pediatric-malaria-vaccine-trial-the-perspectives-of-stakeholders-from-ghana-and-tanzania
#6
Claire Leonie Ward, David Shaw, Evelyn Anane-Sarpong, Osman Sankoh, Marcel Tanner, Bernice Elger
This study explores ethical issues raised in providing medical care to participants and communities of low-resource settings involved in a Phase II/III pediatric malaria vaccine trial (PMVT). We conducted 52 key informant interviews with major stakeholders of an international multi-center PMVT (GSK/PATH-MVI RTS,S) (NCT00866619) in Ghana and Tanzania. Based on their stakeholder experiences, the responses fell into three main themes: (a) undue inducement, (b) community disparities, and (c) broad therapeutic misconceptions...
November 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29179624/invited-commentary-on-dub%C3%A3-et-al-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-are-hiv-infected-candidates-for-participation-in-risky
#7
https://www.readbyqxmd.com/read/29179623/in-defense-of-the-questionable-defining-the-basis-of-research-scientists-engagement-in-questionable-research-practices
#8
Donald F Sacco, Samuel V Bruton, Mitch Brown
National Institutes of Health principal investigators reported their perceptions of the ethical defensibility, prevalence in their field, and their personal willingness to engage in questionable research practices (QRPs). Using ethical defensibility ratings, an exploratory factor analysis yielded a two-factor solution: behaviors considered unambiguously ethically indefensible and behaviors whose ethical defensibility was more ambiguous. In addition, increasing perceptions that QRPs affect science predicted reduced acceptability of QRPs, whereas increasing beliefs that QRPs are normative or necessary for career success predicted increased acceptability of QRPs...
November 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29160115/linking-participatory-action-research-on-health-systems-to-justice-in-global-health-a-case-study-of-the-maternal-and-neonatal-implementation-for-equitable-health-systems-project-in-rural-uganda
#9
Bridget Pratt, Adnan A Hyder
An ethical framework called "research for health justice" provides initial guidance on how to link health systems research in low- and middle-income countries to health equity. To further develop the largely conceptual framework, we tested its guidance against the experience of the Maternal and Neonatal Implementation for Equitable Health Systems (Manifest) project, which was performed in rural Uganda by researchers from Makerere University. We conducted 21 in-depth interviews with investigators and research implementers, directly observed study sites, and reviewed study-related documents...
November 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29117849/seeking-ways-to-inform-the-uninformed-improving-the-informed-consent-process-in-online-social-science-research
#10
Evan K Perrault, David M Keating
Participants often do not read consent forms in social science research. This is not surprising, especially for online studies, given they do not typically offer greater risk than what is encountered in daily life. However, if no one is reading, are participants really informed? This study used previous research to craft experimentally manipulated consent forms utilizing different visual presentations (e.g., greater use of line spacing, bullets, bolding, diagrams). Participants ( n = 547) were randomly exposed to one of seven form variations...
November 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29086622/are-the-criteria-for-approval-sufficient-to-protect-research-participants
#11
P Ethicist
No abstract text is available yet for this article.
October 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29073807/an-assessment-of-a-shortened-consent-form-for-the-storage-and-research-use-of-residual-newborn-screening-blood-spots
#12
Erin Rothwell, Aaron Goldenberg, Erin Johnson, Naomi Riches, Beth Tarini, Jeffrey R Botkin
As state newborn screening programs develop approaches to parental permission for the storage and use of residual dried newborn screening samples, it is important to understand how the public comprehends the consent elements. Focus groups in Utah, California, and Michigan ( n = 7 groups, 69 participants) were conducted to evaluate the language on a shortened consent form. Outcomes from the analysis included barriers to conceptualizing biospecimen research, the overly cautious tone and awkwardness of the consent form, and perceptions of community versus individual benefit...
October 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29073806/are-well-informed-potential-trial-participants-more-likely-to-participate
#13
Lucas Lentini Herling de Oliveira, Joao Ricardo Nickenig Vissoci, Wagner de Lara Machado, Clarissa G Rodrigues, Alexander T Limkakeng
Bearing in mind the importance of the informed consent, flaws in this process may be a barrier to participants' recruitment. Our objective was to determine the relationship between the degree of comprehension of the informed consent document plus the importance given to individual elements by potential participants of a hypothetical trial and their willingness to participate in such trials. We performed an Online Survey simulating an emergency department trial recruitment, posteriorly evaluating participants' ratings of importance and self-assessed comprehension of specific topics of the informed consent document...
October 1, 2017: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29037106/standard-versus-simplified-consent-materials-for-biobank-participation-differences-in-patient-knowledge-and-trial-accrual
#14
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
#15
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/29141519/abstracts-from-the-prim-r-2017-advancing-ethical-research-conference
#16
(no author information available yet)
No abstract text is available yet for this article.
December 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
#17
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...
December 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
#18
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
#19
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
#20
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
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