Stigma in African genomics research: Gendered blame, polygamy, ancestry and disease causal beliefs impact on the risk of harm

Social Science & Medicine
Volume 258 August 2020
https://www.sciencedirect.com/journal/social-science-and-medicine/vol/258/suppl/C

 

Discussion Open access
Stigma in African genomics research: Gendered blame, polygamy, ancestry and disease causal beliefs impact on the risk of harm
Jantina de Vries, Guida Landouré, Ambroise Wonkam
Article 113091
Highlights
:: Gendered blame, polygamy and supernatural causal beliefs relate to stigma.
:: African genomics research intersects with pre-existing stigma and may cause harm.
:: Genomics can reveal sensitive information about group ancestry.
: Genomics researchers need to be culturally competent to minimize risk of harm.
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.