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Journal of Empirical Research on Human Research Ethics: JERHRE

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https://www.readbyqxmd.com/read/29774772/assessing-the-quality-and-performance-of-human-research-protection-programs-to-guide-compliance-oversight-activities
#1
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...
May 1, 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
#2
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,...
May 1, 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
#3
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/29701109/attitudes-toward-return-of-genetic-research-results-to-relatives-including-after-death-comparison-of-cancer-probands-blood-relatives-and-spouse-partners
#4
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...
April 1, 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
#5
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...
April 1, 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
#6
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...
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
#7
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
#8
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
#9
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
#10
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
https://www.readbyqxmd.com/read/29561215/do-research-participants-trust-researchers-or-their-institution
#11
Marilys Guillemin, Emma Barnard, Anton Allen, Paul Stewart, Hannah Walker, Doreen Rosenthal, Lynn Gillam
Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants' perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indigenous participants. Thematic analysis was used to analyze the data. This article focuses on findings related to non-Indigenous participants. In contrast to Indigenous participants, non-Indigenous participants placed their trust in research institutions because of their systems of research ethics, their reputation and prestige...
March 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29529932/ethical-research-practice-or-undue-influence-symbolic-power-in-community-and-individual-level-informed-consent-processes-in-community-based-participatory-research-in-swaziland
#12
Michelle Brear
In community-based participatory research (CBPR), community-level consent is assumed to enhance ethical rigor, when obtained prior to individual informed consent. However, community leaders' permission to conduct research may influence individuals' agency to decline participation. This article presents findings of a Bourdieusian analysis of ethnographic data documenting CBPR in rural Swaziland. The findings reveal that the "symbolic power" of leaders who provide community-level consent constrains individual agency and reproduces existing relations of power, if individual informed consent is simply a procedure...
March 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29576008/call-for-papers-for-research-ethics-in-empirical-ethics-studies-case-studies-and-commentaries
#13
(no author information available yet)
No abstract text is available yet for this article.
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29471711/enhancing-autonomy-in-biobank-decisions-too-much-of-a-good-thing
#14
Phoebe B Mitchell, Sonja I Ziniel, Sarah K Savage, Kurt D Christensen, Elissa R Weitzman, Robert C Green, Noelle L Huntington, Debra J Mathews, Ingrid A Holm
The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents' preferences and intent to participate (ITP) in biobank research utilizing their child's genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29471706/-where-did-this-prep-come-from-african-american-mother-daughter-perceptions-related-to-adolescent-preexposure-prophylaxis-prep-utilization-and-clinical-trial-participation
#15
Faith E Fletcher, Celia Fisher, Meredith K Buchberg, Brenikki Floyd, Anna Hotton, Angelica Ehioba, Geri Donenberg
Despite the demonstrated effectiveness of preexposure prophylaxis (PrEP) to reduce incident HIV infections, PrEP's potential as an HIV prevention strategy for adolescent populations is unknown. This study assessed perceptions of adolescent PrEP use and clinical trial participation among African American women and their adolescent daughters. We conducted focus group discussions with 15 African American mother/daughter pairs ( N = 30). Findings suggest a general lack of PrEP awareness, favorable attitudes toward adolescent PrEP use, altruistic attitudes regarding research participation among daughters, and less favorable attitudes toward adolescent clinical trial participation among mothers...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29460668/personal-control-over-decisions-to-participate-in-research-by-persons-with-histories-of-both-substance-use-disorders-and-criminal-justice-supervision
#16
Donna T Chen, Tomohiro M Ko, Ashleigh A Allen, Richard J Bonnie, Colleen E Suratt, Paul S Appelbaum, Edward V Nunes, Peter D Friedmann, Joshua D Lee, Michael S Gordon, Ryan McDonald, Donna Wilson, Tamara Y Boney, Sean M Murphy, Charles P O'Brien
Individuals must feel free to exert personal control over decisions regarding research participation. We present an examination of participants' perceived personal control over, as well as reported pressures and threats from others, influencing their decision to join a study assessing the effectiveness of extended-release naltrexone in preventing opioid dependence relapse. Most participants endorsed a strong sense of control over the decision; few reported pressures or threats. Although few in number, participants' brief narrative descriptions of the pressures and threats are illuminating and provide context for their perceptions of personal control...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29448868/a-practical-approach-to-including-adults-unable-to-consent-in-research
#17
P Ethicist
No abstract text is available yet for this article.
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29390947/broad-consent-for-research-on-biospecimens-the-views-of-actual-donors-at-four-u-s-medical-centers
#18
Teddy D Warner, Carol J Weil, Christopher Andry, Howard B Degenholtz, Lisa Parker, Latarsha J Carithers, Michelle Feige, David Wendler, Rebecca D Pentz
Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29350083/from-a-fair-game-to-a-form-of-covert-research-research-ethics-committee-members-differing-notions-of-consent-and-potential-risk-to-participants-within-social-media-research
#19
R A Hibbin, G Samuel, G E Derrick
Social media (SM) research presents new challenges for research ethics committees (RECs) who must balance familiar ethical principles with new notions of public availability. This article qualitatively examines how U.K. REC members view this balance in terms of risk and consent. While it found significant variance overall, there were discernible experience-based trends. REC members with less experience of reviewing SM held inflexible notions of consent and risk that could be categorized as either relying on traditional notions of requiring direct consent, or viewing publicly available data as "fair game...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29347871/commentary-on-regulatory-support-improves-subsequent-irb-rec-approval-rates-in-studies-initially-deemed-not-ready-for-review-a-ctsa-institution-s-experience
#20
Stuart G Nicholls
In response to researcher concerns a number of initiatives have been developed to support individual researchers seeking ethics review and approval. In this issue, Sonne et al. (2017) outline an example of an intervention to support researchers, which they refer to as a Regulatory Knowledge Support (RKS) service. While the study points to potential benefits, other studies have not had the desired impact on key performance measures. There is a need to develop a community of practice and expand the burgeoning evidence base regarding what interventions work, for whom, and under what circumstances...
April 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
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