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Journal of Empirical Research on Human Research Ethics: JERHRE

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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
#1
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
#2
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
#3
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
#4
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
#5
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/29902956/the-real-time-irb-a-collaborative-innovation-to-decrease-irb-review-time
#6
Ryan Spellecy, Ann Marie Eve, Emily R Connors, Reza Shaker, David C Clark
Lengthy review times for institutional review boards (IRBs) are a well-known barrier to research. In response to numerous calls to reduce review times, we devised "Real-Time IRB," a process that drastically reduces IRB review time. In this, investigators and study staff attend the IRB meeting and make changes to the protocol while the IRB continues its meeting, so that final approval can be issued at the meeting. This achieved an overall reduction in time from submission to the IRB to final approval of 40%...
June 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29902953/irb-oversight-of-patient-centered-outcomes-research-a-national-survey-of-irb-chairpersons
#7
Joel S Weissman, Eric G Campbell, I Glenn Cohen, Holly Fernandez Lynch, Emily A Largent, Avni Gupta, Ronen Rozenblum, Melissa Abraham, Karen Spikes, Maureen Fagan, Martie Carnie
Patient-centered outcomes research (PCOR) is becoming increasingly common. However, there is little evidence regarding what novel ethical challenges, if any, are posed by PCOR with relevance to institutional review board (IRB) oversight and human subjects protections. This article reports the results of a national survey of all IRB chairpersons from research-intensive institutions in the United States. Findings address the responsibilities of IRBs and the challenges associated with PCOR review and oversight...
June 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29900801/biobanking-in-the-pediatric-critical-care-setting-adolescent-young-adult-perspectives
#8
Erin D Paquette, Sabrina F Derrington, Avani Shukla, Neha Sinha, Sarah Oswald, Lauren Sorce, Kelly N Michelson
Biorepository research in children raises numerous ethical questions that are heightened in the pediatric intensive care unit (PICU) setting. We conducted a cross-sectional, interview-based study of 20 adolescent/young adult (A/YA) PICU patients and 75 parents of PICU patients to elucidate perspectives on biorepository research. A/YAs had a positive attitude toward biobanking. In young adults, comprehension was higher for knowledge of a choice to withdraw and participate in the research and lower for purpose, procedures, risks, and benefits of participation...
June 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29806518/adolescent-and-parental-attitudes-about-return-of-genomic-research-results-focus-group-findings-regarding-decisional-preferences
#9
Michelle L McGowan, Cynthia A Prows, Melissa DeJonckheere, William B Brinkman, Lisa Vaughn, Melanie F Myers
Opportunities to participate in genomic sequencing studies, as well as recommendations to screen for variants in 59 medically actionable genes anytime clinical genomic sequencing is performed, indicate adolescents will increasingly be involved in decisions about learning secondary findings from genome sequencing. However, how adolescents want to be involved in such decisions is unknown. We conducted five focus groups with adolescents (2) and parents (3) to learn their decisional preferences about return of genomic research results to adolescents...
May 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29790410/perspectives-on-electronic-informed-consent-from-patients-underrepresented-in-research-in-the-united-states-a-focus-group-study
#10
Christian M Simon, Helen A Schartz, Gary E Rosenthal, Eric L Eisenstein, David W Klein
Digital informed consent may better inform individuals about health research and increase participation. In the United States and elsewhere, minorities and rural populations are underrepresented in health research and may benefit from well-designed electronic informed consent (eIC). Seven focus groups were conducted with 50 Caucasian, African American, and rural patients in the United States. Participants were asked their preferences for a paper versus electronic informed consent document. Participants found the e-version easier to use, more interesting, and better for understanding...
May 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
#11
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
#12
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
#13
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
#14
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
#15
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/29701110/a-framework-for-community-and-stakeholder-engagement-experiences-from-a-multicenter-study-in-southern-africa
#16
Rosemary Musesengwa, Moses J Chimbari, Samson Mukaratirwa
Community and stakeholder engagement (CSE) are central to conducting multicenter health research. Multicenter studies are, however, considerably more complex because they involve a geographically diverse pool of participants and researchers, making uniform application of CSE strategies difficult. This article describes a framework to achieve CSE based on the experiences of a conducting a multicenter study in Southern Africa. The CSE framework is divided into three phases: before research commences, during, and after the study...
April 1, 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
#17
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...
April 1, 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
#18
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 = ...
April 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29631486/south-african-research-ethics-committee-review-of-standards-of-prevention-in-hiv-vaccine-trial-protocols
#19
Zaynab Essack, Douglas R Wassenaar
HIV prevention trials provide a prevention package to participants to help prevent HIV acquisition. As new prevention methods are proven effective, this raises ethical and scientific design complexities regarding the prevention package or standard of prevention. Given its high HIV incidence and prevalence, South Africa has become a hub for HIV prevention research. For this reason, it is critical to study the implementation of relevant ethical-legal frameworks for such research in South Africa. This qualitative study used in-depth interviews to explore the practices and perspectives of eight members of South African research ethics committees (RECs) who have reviewed protocols for HIV vaccine trials...
April 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29629822/opt-out-parental-consent-in-online-surveys-ethical-considerations
#20
Jane Harris, Lorna Porcellato
This article aims to foster discussion and debate around seeking parental consent from young people recruited online. The growth of social media, particularly for young people, has led to increased interest in young people's online activities as both a research topic and recruitment setting. In a health-related study, which sought to recruit young people aged 13 to 18 years old from YouTuber fan communities to an online survey, the question arose of how parental consent could be sought from young people below 16 when no link existed between researcher and parents/guardians...
April 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
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