ArticleGlobal bioethics = Problemi di bioetica2019
What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.
Article in Global bioethics = Problemi di bioetica, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
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Who cites it
23 citing papers in PubMed.
- From Acceptable Profit to Fair Return: Operational Benefit-Sharing Models for Induced Pluripotent Stem Cell Research Using Legacy Samples from Low- and Middle-Income Countries.Research square · 2026Article
- 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
- Interpretative phenomenological analysis and genetic counseling.Journal of genetic counseling · 2025Review
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua.European journal of human genetics : EJHG · 2024Article
- Charting a landmark-driven path forward for population genetics and ancient DNA research in Africa.American journal of human genetics · 2024Review
- 'Research ethics · 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
- Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.Journal of empirical research on human research ethics : JERHRE · 2022Article
- Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.BMC medical ethics · 2022Article
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria.PloS one · 2022Article
- Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.BMC medical ethics · 2021Article
- Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.Global bioethics = Problemi di bioetica · 2021Article
- Editorial - ethical practice and genomic research.Global bioethics = Problemi di bioetica · 2020Article
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6 authors.
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Abstract
Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants' needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.
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