ArticleSocial science & medicine (1982)2012
Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely?
Article in Social science & medicine (1982), 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Narratives and tensions in the ethics of human proteomics literature: a scoping review.BMC medical ethics · 2026Pooled it
- Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Black community member perceptions and ethics recommendations on epigenomic research.Clinical epigenetics · 2025Article
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Cross-border data sharing for research in Africa: An analysis of the data protection and research ethics requirements in 12 jurisdictions.Research square · 2024Article
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.Resuscitation plus · 2023Review
- Social and scientific motivations to move beyond groups in allele frequencies: The TOPMed experience.American journal of human genetics · 2022Review
- Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.BMC medical ethics · 2022Article
- The role of causal knowledge in stigma considerations in African genomics research: Views of South African Xhosa people.Social science & medicine (1982) · 2021Article
- Exploring how a genetic attribution to disease relates to stigma experiences of Xhosa patients with schizophrenia in South Africa.Social psychiatry and psychiatric epidemiology · 2020Article
- Stigma in African genomics research: Gendered blame, polygamy, ancestry and disease causal beliefs impact on the risk of harm.Social science & medicine (1982) · 2020Article
- The ethics and logistics of field-based genetic paternity studies.Evolutionary human sciences · 2020Article
- Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research.Asian bioethics review · 2019Article
- Precisely Where Are We Going? Charting the New Terrain of Precision Prevention.Annual review of genomics and human genetics · 2017Review
- Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: protocol for a systematic review.Systematic reviews · 2017Article
- Trust me, I'm a researcher!: The role of trust in biomedical research.Medicine, health care, and philosophy · 2017Article
- Hunter-gatherer genomics: evolutionary insights and ethical considerations.Current opinion in genetics & development · 2016Review
- Exploring researchers' experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study.BMC medical ethics · 2015Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
A common assumption in genomics research is that the use of ethnic categories has the potential to lead to ethnic stigmatisation - particularly when the research is done on minority populations. Yet few empirical studies have sought to investigate the relation between genomics and stigma, and fewer still with a focus on Africa. In this paper, we investigate the potential for genomics research to lead to harms to ethnic groups. We carried out 49 semi-structured, open-ended interviews with stakeholders in a current medical genomics research project in Africa, MalariaGEN. Interviews were conducted with MalariaGEN researchers, fieldworkers, members of three ethics committees who reviewed MalariaGEN project proposals, and with members of the two funding bodies providing support to the MalariaGEN project. Interviews were conducted in Kenya, The Gambia and the UK between June 2008 and October 2009. They covered a range of aspects relating to the use of ethnicity in the genomics project, including views on adverse effects of the inclusion of ethnicity in such research. Drawing on the empirical data, we argue that the risk of harm to ethnic groups is likely to be more acute in specific types of genomics research. We develop a typology of research questions and projects that carry a greater risk of harm to the populations included in genomics research. We conclude that the potential of generating harm to ethnic groups in genomics research is present if research includes populations that are already stigmatised or discriminated against, or where the research investigates questions with particular normative implications. We identify a clear need for genomics researchers to take account of the social context of the work they are proposing to do, including understanding the local realities and relations between ethnic groups, and whether diseases are already stigmatised.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.