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

Genome-wide association studies

“…First, PRSs have been proposed as a means for embryo selection based on GWAS results, which has proved to be highly controversial 238 . Second, genetic determinism may lead to stigma for patients or their family members 239,240 . Robust community engagement and the development of mitigation strategies are imperative in mitigating the possibility of stigmatization, as is ensuring that research teams have a high degree of cultural competence 234 .…”

Perspectives on Building Sustainable Newborn Screening Programs for Sickle Cell Disease: Experience from Tanzania

“…The sub-set of these data that was analyzed to understand how gender norms influence quality of care of the child with SCD reveals a disproportionate burden of care to the mothers [ 26 ]. The findings drive the discussion beyond not just acceptability but also understanding social norms that may interfere with the child’s quality of care after screening [ 38 ].…”

Perspectives on building sustainable newborn screening programs for sickle cell disease: Experiences from Tanzania

“…The sub-set of this data that was analyzed to understand how gender norms influences quality of care of the child with SCD, reveals disproportionate burden of care to the mothers [28]. The findings drive the discussion beyond not just acceptability but also understanding social norms that may interfere with the child’s quality of care after screening [39].…”