ArticleSocial science & medicine (1982)2020
Stigma in African genomics research: Gendered blame, polygamy, ancestry and disease causal beliefs impact on the risk of harm.
Article in Social science & medicine (1982), 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 2 syntheses or guidelines pooled it, 26 citations in OpenAlex.
- Clinical and Genetic Predictors of Sickle Cell Nephropathy: A Global Systematic Review.Omics : a journal of integrative biology · 2025Pooled it
- Ethical issues in genomics research in persons with Alzheimer's Disease/Alzheimer's Disease-related dementia (AD/ADRD): a systematic review.BMC medical ethics · 2024Pooled it
- Lived experiences of parents of children with genetic and neurodevelopmental disorders accessing genetic services in Rwanda: barriers and enablers.Journal of community genetics · 2026Article
- Social stigma, genetic services, and South Africa: is testing taboo?Journal of community genetics · 2026Review
- A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.Medicine, health care, and philosophy · 2024Article
- Digital interventions for genomics and genetics education, empowerment, and service engagement: A systematic review.Journal of community genetics · 2023Review
- Patient-facing genetic and genomic mobile apps in the UK: a systematic review of content, functionality, and quality.Journal of community 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
- Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community.Molecular genetics & genomic medicine · 2021Article
- Perspectives on Building Sustainable Newborn Screening Programs for Sickle Cell Disease: Experience from Tanzania.International journal of neonatal screening · 2021Article
- Influence of gender norms in relation to child's quality of care: follow-up of families of children with SCD identified through NBS in Tanzania.Journal of community genetics · 2021Article
- Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 2 countries.
Funding
Abstract
A recurring concern in genomics research is the possibility that it could lead to stigma for participants, their families and the population groups they belong to. Little evidence exists to explain how and when this ought to be a concern in genomics research in Africa whilst there is growing international evidence drawing into question the direct link between stigma and genetics. In this paper, we interrogate practical instances from African genomics research where stigma was identified as a concern in an attempt to nuance and refine accounts of when stigma should be considered as an ethical issue. The paper describes examples involving gendered blame, polygamy, beliefs in supernatural disease causation and sensitive information about group lineage. We propose that the concern may not be about stigma so much as broader research-related harm, including for instance reputational harm to population groups. Furthermore, we propose to shift the analytical gaze from establishing causal relationships to exploring the intersection of genomics with pre-existing stigma. Finally, we emphasize the importance of ensuring genomics researchers are culturally competent, meaning able to recognise when cultural factors impact on the possibility that genomics research could cause harm.
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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.