ArticleBMC medical ethics2021
Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.
Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
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Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented Privacy Law, and Human Rights Risks as Central Participant Concerns.Journal of bioethical inquiry · 2026Article
- Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.Developing world bioethics · 2026Article
- Rethinking ethical reflexivity and oversight in health research through an ecosystem approach: A workshop report.Research ethics · 2026Article
- Article
- Advancing Doctoral and Postdoctoral International Bioethics Training Programs Supported by the D43 National Institutes of Health (NIH) Fogarty Mechanism.Journal of empirical research on human research ethics : JERHRE · 2025Article
- Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute.BMC medical ethics · 2025Article
- How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.Journal of clinical and translational science · 2025Article
- Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.PloS one · 2025Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.BMC medical ethics · 2024Article
- "A Call To Action": The need for genetic counseling in Uganda.Genetics in medicine open · 2024Article
- Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Precision medicine decision-making under pharmacogenomics in nursing: realizing value from limited evidence to scaled clinical pathways.Frontiers in neurologyReview
- Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.AJOB empirical bioethicsArticle
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.
methodsThis was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis.
resultsThe return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks.
conclusionsThe return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.
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