‘ It is a complex process, but it’s very important to return these results to participants’ . Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV

Bibliographic Data

ID21787642
AuthorsSylvia Nabukenya (0000-0001-5868-7376, Infectious Diseases Institute, corresponding author), David Kyaddondo (Makerere University), Adelline Twimukye (0000-0002-5053-0574, Infectious Diseases Institute), Ian G Munabi (0000-0001-6028-7355, Makerere University), Catriona Waitt (0000-0003-0134-5855, University of Liverpool), Erisa Mwaka (0000-0003-1672-9608, Makerere University)
Year2024
Volume20
Issue2
Pages363-387
Publication date2024-04-01
Open AccessYes
TypeARTICLE
VenueResearch Ethics (JOURNAL)
Journal identifiersISSN: 1747-0161 • E-ISSN: 2047-6094
PublisherSAGE Publications (PUBLISHER • US)
DOI10.1177/17470161231207739
PMID40370487
OpenAlexW4388048669
LanguageEN
Citations received1
References cited63

This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five prominent themes: (i) defining the nature of research results to return to participants; (ii) preparing research participants to receive their results; (iii) obtaining informed consent for the return of results; (iv) opinions on health personnel to return the results to participants; and (v) opinions on how research results should be communicated to participants. Respondents identified various strategies for the return of individual results with minimal ethical risks including the setting up of a diverse and independent committee to undertake a risk-benefit assessment based on local context; ongoing discussions about the possible kinds of results and their implications throughout the study; and employing genetic counsellors to communicate results to participants. The strategies identified in this study should be further studied and independently verified

Alternative medicine · Bioethics · Focus group · Informed consent · Medical education · Pharmacogenomics · Political science · Public relations · Qualitative research · Research ethics · Social science · Sociology · Ethics in Clinical Research · HIV Research and Treatment · HIV/AIDS Research and Interventions · Medicine · Psychology

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