ArticleBMC medical ethics2022
Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.
Article in BMC medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline 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
- Article
- Strengthening ethical oversight in genomics and biobanking: a retrospective analysis of research practices in Zimbabwe.BMC medical ethics · 2025Article
- Research participants and stakeholders' views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana.BMC nephrology · 2025Article
- Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.Journal of empirical research on human research ethics : JERHRE · 2025Article
- Cohort Profile: Africa Wits-INDEPTH partnership for Genomic studies (AWI-Gen) in four sub-Saharan African countries.International journal of epidemiology · 2024Article
- 'Research ethics · 2024Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.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
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Authors and funding
7 authors.
Funding
Abstract
backgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.
methodsThis qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. The purposively selected participants, included research ethics committee (REC) members (8), community members (44), community resource persons (8), and researchers (9). A semi-structured interview guide was used to facilitate discussions. Six FGDs and twenty-five (IDIs) were conducted among the different stakeholders. The issues explored in the interviews included: (1) views on returning results, (2) kind of results to be returned, (3) value of returning results to participants, and (4) challenges anticipated in returning results to participants and communities. The interviews were audio-recorded, transcribed verbatim, and coded in Nvivo 12 pro. Thematic and content analysis was conducted.
resultsParticipants agreed on the importance of returning genomic results either as individual or aggregate results. The most cited reasons for returning of genomic results included recognizing participants' contribution to research, encouraging participation in future research, and increasing the awareness of scientific progress. Other aspects on how genomic research results should be shared included sharing easy to understand results in the shortest time possible and maintaining confidentiality when sharing sensitive results.
conclusionsThis study identified key stakeholders' perspectives on returning genomic results at the individual and community levels in two urban informal settlements of Nairobi. The majority of the participants expect to receive feedback about their genomic results, and it is an obligation for researchers to see how to best fulfil it.
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