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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/30183457/perceived-risks-and-benefits-in-ipv-and-hiv-research-listening-to-the-voices-of-hiv-positive-african-american-women
#1
Nicole M Overstreet, Mukadder Okuyan, Celia B Fisher
African American women living with HIV were asked to reflect on the perceived risks and benefits of research participation after completing a study examining socially sensitive issues in their lives, including intimate partner violence (IPV) and HIV. Administration of standardized quantitative instruments yielded positive responses to the research experience. However, qualitative assessments of perceived risks and benefits revealed more nuanced responses. For example, confidentiality concerns were more prominent in open-ended responses as was participants' positive attitudes toward monetary compensation...
September 5, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30141738/is-it-time-to-re-evaluate-the-ethics-governance-of-social-media-research
#2
G Samuel, W Ahmed, H Kara, C Jessop, S Quinton, S Sanger
This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular...
August 24, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30124102/an-analysis-of-informed-consent-form-readability-of-oncology-research-protocols
#3
Benjamin Munley, Amy T Buser, Stephanie Gaudreau, Joseph L Breault, Lydia A Bazzano
Twenty-two percent of adults in the United States have only basic health literacy skills. We used a multiple linear regression model to identify associations between readability of informed consent documents with study sponsor, study phase, and approval year using a sample of 143 oncology studies at Ochsner Medical Center. The M ± SD Flesh-Kincaid Reading Grade Level (RGL) was 10.33 ± 0.85 and Flesh Reading Ease (FRE) was 52.89 ± 5.49. National Cancer Institute studies had a significantly lower mean RGL and FRE as compared with other sponsors (RGL 9...
August 20, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30103655/adolescents-and-parents-attitudes-toward-adolescent-clinical-trial-participation-changes-over-one-year
#4
Rebecca K Tsevat, Carmen Radecki Breitkopf, Sara E Landers, Ariel M de Roche, Christine Mauro, Lisa S Ipp, Marina Catallozzi, Susan L Rosenthal
Little is known about how adolescents' and parents' thoughts about participation in clinical trials change over time. In this study, adolescent (14-17 years)-parent dyads were asked about willingness to participate in a hypothetical reproductive health study. A year later, they were asked how their thoughts about the study had changed. Qualitative responses were coded and analyzed using framework analysis. Thirty-two percent of adolescents and 18% of parents reported changes in thoughts; reasons included general changes in perception, clearer understanding, new knowledge or experiences, increased maturity/age of adolescents, and changes in participants independent of the study...
August 13, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30091400/academic-and-scientific-authorship-practices-a-survey-among-south-african-researchers
#5
Elsie Breet, Jan Botha, Lyn Horn, Leslie Swartz
Empirical studies of authorship practices in high-income countries have been conducted, while research on this issue is scarce in low- and middle-income countries. A survey was conducted among South African researchers who have published in peer-reviewed journals, to explore their understanding of and ability to apply academic authorship criteria. A total of 967 researchers participated in the survey; 88% of respondents had knowledge of academic authorship criteria, while only 52% found it easy to apply the criteria...
August 9, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30084320/-hope-for-the-best-plan-for-the-worst-understanding-institutional-inertia-in-developing-confidentiality-protection-policies
#6
Ted Palys, Aaren Ivers
When legal challenges to research confidentiality arise, researchers are expected to resist while the institutions that approve their research provide legal support to enable that resistance. Although researchers have done their part, university administrators have been much less consistent doing theirs. Canada's federal policy now affirms university administrations "must" provide independent legal representation and "encourages" them to develop policies that articulate how they will do so...
August 7, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30047823/assessment-of-motivations-and-willingness-to-participate-in-research-of-outpatients-with-anxiety-mood-and-psychotic-disorders
#7
Inés Morán-Sánchez, Antonio Maurandi-López, María D Pérez-Cárceles
The motivations of participants recruited for research, especially from potentially vulnerable populations, have received increasing attention. The present investigation compares the motivations and willingness to participate in research of 134 psychiatric outpatients and 50 controls. The willingness to participate of both groups was similar. We found a higher proportion of psychiatric admissions and a higher degree of computer literacy among those willing to participate. Regardless of their decision concerning participation, the reasons given by the members of both groups were logical and concordant with the related literature...
July 26, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/30009655/they-know-how-to-work-it-that-s-their-focus-in-life-the-complex-role-of-industry-representatives-in-surgical-innovation
#8
Jane Johnson, Katrina Hutchison
Relationships between health care providers and industry can generate conflicts of interest with their attendant harms. However, the types of relationships that involve conflicts of interest have often been understood narrowly as material ones between individual clinicians and industry. In research we undertook with surgical teams, we found the role of industry representatives has become normalized in the context of surgical innovation. In this article, we report the findings of our study and unpack the features of both surgery and innovation which contribute to the scope and normalization of industry involvement...
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29998790/-stop-talking-to-people-talk-with-them-a-qualitative-study-of-information-needs-and-experiences-among-genetic-research-participants-in-pakistan-and-denmark
#9
Zainab Afshan Sheikh, Klaus Hoeyer
This article explores how research participants experienced information practices in an international genetic research collaboration involving the collection of biomaterial and clinical data in both Pakistan and Denmark. We investigated how people make sense of their research participation and the types of information they need and desire. We found great variation in what information exchange does and what participants experience as meaningful. For example, information practices could serve as a source of respect and recognition (in Denmark) or of hope, understanding or help when dealing with suffering (in Pakistan)...
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29998787/women-s-views-about-a-paternal-consent-requirement-for-biomedical-research-in-pregnancy
#10
Kristen A Sullivan, Maggie Little, Nora E Rosenberg, Tiwonge Mtande, Chifundo Zimba, Elana Jaffe, Jean Anderson, Jenell S Coleman, Sappho Gilbert, Marielle S Gross Wolf, Irving Hoffman, Lisa Rahangdale, Ruth Faden, Anne Drapkin Lyerly
Clinical research to inform the evidence base to guide nonobstetrical care during pregnancy is critically important for the well-being of women and their future offspring. Conversations about regulations for such research, including whether paternal consent should ever be required, should be informed by the perspectives of those most affected, namely, pregnant women. We conducted in-depth interviews with 140 pregnant women living with or at risk of HIV-70 in Malawi, 70 in the United States-exploring their views on requiring paternal consent for pregnant women's participation in trials offering the prospect of direct benefit solely to the fetus...
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29998780/when-nursing-care-and-clinical-trials-coincide-a-qualitative-study-of-the-views-of-nordic-oncology-and-hematology-nurses-on-ethical-work-challenges
#11
Tove E Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen
This study investigated the kinds of ethical challenges experienced by nurses in oncology and hematology when nursing care and research overlap in clinical trials, and how the nurses handle such challenges. Individual interviews with 39 nurses from Sweden, Denmark, and Finland indicated that all nurses were positive about research, considering it essential for developing the best care. Ethical challenges exist, however; the most difficult were associated with the end-of-life patients, no longer responsive to standard therapy, who eagerly volunteer for cutting-edge drug trials in the hope of gaining therapeutic benefit...
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29989512/practical-ethicist-what-is-understandable-language
#12
P Ethicist
No abstract text is available yet for this article.
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29985088/misuse-of-coauthorship-in-medical-theses-in-sweden
#13
Gert Helgesson, Niklas Juth, Josephine Schneider, Michael Lövtrup, Niels Lynøe
The aim of this study was to explore experiences of authorship issues among persons who have recently received their doctoral degree in medicine in Sweden. A survey was mailed to all who received their PhD at a medical faculty at a Swedish university the first half of 2016. Questions concerned experiences of violations of the first three authorship criteria in the Vancouver rules and of misuse of authorship order in the articles of their thesis, and the respondents' attitudes to these matters. The questionnaire was returned by 285 respondents (68%)...
July 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29774772/assessing-the-quality-and-performance-of-human-research-protection-programs-to-guide-compliance-oversight-activities
#14
Min-Fu Tsan, Yen Nguyen
Routine on-site reviews should focus primarily on facilities that are at risk of harming human subjects. Using human research protection program performance metric data from 107 facilities, we defined a facility to be at risk when one of its noncompliance/incident rates was among the top three highest rates of that performance metric. Based on 14 performance metrics with noncompliance and incidents in 2017, 27 facilities were identified to be at risk. These 27 facilities at risk, while constituting only 25% of all facilities, contributed to 70% ± 25% ( M ± SD; range = 32%-100%) of all reported noncompliance/incidents...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29756531/the-ethics-of-end-of-trial-obligations-in-a-pediatric-malaria-vaccine-trial-the-perspectives-of-stakeholders-from-ghana-and-tanzania
#15
Claire Leonie Ward, David Shaw, Evelyn Anane-Sarpong, Osman Sankoh, Marcel Tanner, Bernice Elger
This study explores stakeholder experiences and perspectives on end-of-trial obligations at the close of a phase II/III Pediatric Malaria Vaccine Trial (PMVT) [GSK/PATH-MVI RTS, S) (NCT00866619]. We conducted 52 key informant interviews with major stakeholders of an international multicentre PMVT in Ghana and Tanzania. The responses fell into four main themes: (a) Communicating End-of-Trial, (b) Maintaining Health Care Services, (c) Dissemination of Results, and (d) Post-Trial Access. Interviewee responses shared important practical experiences and insights that complement current thinking in the literature on research ethics guidance: (a) accompany end-of-trial communication with information on personal and family health care responsibilities, (b) establish public health indicators to measure the impact of research on a health care system,...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29701109/attitudes-toward-return-of-genetic-research-results-to-relatives-including-after-death-comparison-of-cancer-probands-blood-relatives-and-spouse-partners
#16
Carmen Radecki Breitkopf, Susan M Wolf, Kari G Chaffee, Marguerite E Robinson, Noralane M Lindor, Deborah R Gordon, Barbara A Koenig, Gloria M Petersen
Genetic research generates results with implications for relatives. Recommendations addressing relatives' access to a participant's genetic research findings include eliciting participant preferences about access and choosing a representative to make decisions about access upon participant incapacity/death. Representatives are likely to be blood relatives or spouse/partners (who may share genetically related children). This raises the question of whether relatives hold similar attitudes about access or divergent attitudes that may yield conflict...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29683056/a-geoprivacy-by-design-guideline-for-research-campaigns-that-use-participatory-sensing-data
#17
Ourania Kounadi, Bernd Resch
Participatory sensing applications collect personal data of monitored subjects along with their spatial or spatiotemporal stamps. The attributes of a monitored subject can be private, sensitive, or confidential information. Also, the spatial or spatiotemporal attributes are prone to inferential disclosure of private information. Although there is extensive problem-oriented literature on geoinformation disclosure, our work provides a clear guideline with practical relevance, containing the steps that a research campaign should follow to preserve the participants' privacy...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29667543/assessment-of-parents-guardians-initial-comprehension-and-1-day-recall-of-elements-of-informed-consent-within-a-mozambican-study-of-pediatric-bacteremia
#18
Ezequiel B Ossemane, Troy D Moon, Jahit Sacarlal, Esperança Sevene, Darlene Kenga, Wu Gong, Elizabeth Heitman
Participants' understanding of key elements of a research protocol is essential to their ethical enrollment in the study. Ongoing participation should be based on continued comprehension and consent, which presumes a high degree of recall. Many obstacles can prevent full understanding of information about the research protocol. This study's aim was to evaluate the comprehension and 1-day recall of the elements of informed consent by the parents/guardians of children enrolled in a clinical study in Mozambique...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29631488/understanding-of-international-committee-of-medical-journal-editors-authorship-criteria-among-faculty-members-of-pharmacy-and-other-health-sciences-in-jordan
#19
Osama Y Alshogran, Wael K Al-Delaimy
Authorship represents a critical element of scientific research. This study evaluated the perceptions, attitudes, and practices of Jordanian researchers toward the International Committee of Medical Journal Editors (ICMJE) authorship criteria. An anonymous questionnaire was distributed to health sciences faculty ( n = 986), with 272 participants completing the questionnaire. Only 27.2% reported awareness of ICMJE guidelines, yet, 76.8% agreed that all ICMJE criteria must be met for authorship, and 55.9% believed that it is easy to apply the guidelines...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29631487/development-and-preliminary-testing-of-the-perceived-benefit-and-burden-scales-for-cancer-clinical-trial-participation
#20
Connie M Ulrich, Qiuping Pearl Zhou, Sarah J Ratcliffe, Kathleen Knafl, Gwenyth R Wallen, Therese S Richmond, Christine Grady
We developed measures of benefits and burdens of research participation in cancer clinical trials using a sequential mixed methods design with a qualitative ( n = 32) and quantitative sample ( n = 110) of cancer clinical trial participants. Benefit-burden items (22 for benefits, 23 for burdens) were subsequently developed and assessed through cognitive interviewing for content, clarity, and meaning. Preliminary psychometric analyses support the internal consistency reliability and construct validity of Benefit (α = ...
July 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
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