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Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa: Addressing the Risk of Stigma

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Living with Dementia

Part of the book series: Advances in Neuroethics ((AIN))

Abstract

Recent estimates of the prevalence of dementia in Sub-Saharan Africa indicate that it is set to increase considerably. There is therefore an urgent need for large-scale studies of dementia risk factors in this context, including genomic studies of the most common form of dementia, late-onset Alzheimer’s disease. While studies have increased our knowledge of the genetic architecture of late-onset Alzheimer’s disease, there is significant underrepresentation of populations with African ancestry. This underrepresentation has ethical implications, given the long-term potential of genetic knowledge for predicting risk, improved diagnosis, and possibly novel treatment approaches for Alzheimer’s disease. Such studies may, nevertheless, pose indirect risks to participants in contexts where the symptoms associated with dementia are highly stigmatized. On the other hand, large-scale studies may offer unique opportunities to address dementia stigma through providing the infrastructure for further empirical ethics research, community engagement and collaboration with nonspecialized health care providers, including traditional and faith healers. In this chapter, we commence with an introduction of relevant background to frame these issues, followed by an overview of conceptual interpretations of dementia-related stigma and dominant explanatory models of dementia-related symptoms in sub-Saharan African contexts, with special attention paid to a prevalent explanatory model that links dementia symptoms with malevolent spiritual causes such as witchcraft. Given that genomic studies are often premised on a biogenetic model of disease, we then look at findings from studies that have assessed the impact of such explanatory models on stigma. In particular, we highlight the possibility that biogenetic approaches to mental disorder may be interpreted in essentializing and dehumanizing ways in sub-Saharan African contexts. We then outline some commonalities in Afro-Communitarian moral frameworks and the implications for a deeper understanding of dementia stigma. We conclude with some suggestions of ways in which large-scale genomic studies can avoid exacerbating dementia stigma.

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Notes

  1. 1.

    Common genetic variants or alleles are single nucleotide polymorphisms (SNPs) present in more than 1% of the population whereas rare variants or mutations are found in less than 1% of the population.

  2. 2.

    Copy number variants (CNVs) are micro-deletions or duplications of regions of DNA that vary in size. They can be inherited or arise spontaneously (de novo) [14].

  3. 3.

    While our discussion is focused on dementia stigma in SSA, it must be noted that this region is characterized by considerable cultural diversity. Because of this, generalizations about beliefs and attitudes towards dementia and stigma must be made with caution. However, we contend that there are, nevertheless, certain commonalities and relevant contextual factors, as evidenced in various empirical studies that have been conducted in different African contexts, that are sufficiently present for certain generalizations to be made.

  4. 4.

    Here, we use the term moral framework in a normative sense, referring to guiding ideals, i.e. moral beliefs of what is right and wrong which inform how one should act.

  5. 5.

    It is not only descriptive studies of dementia stigma that are lacking in sub-Saharan African contexts. Of the studies included in a recent narrative review of the effectiveness of anti-stigma interventions in the area of mental health, nearly all of the included studies were conducted in high-income countries. While there were two studies included from lower-middle income countries, no studies from low-income countries qualified for inclusion [89].

  6. 6.

    For example, a genetic variant with a small effect size (relative risk between 0–2) generally requires a sample size of greater than 8000 cases and an equal number of controls [92].

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Authors and Affiliations

  1. Department of Philosophy, Stellenbosch University, Stellenbosch, South Africa

    Andrea C. Palk

  2. Department of Psychiatry and Neuroscience Institute, SA MRC Unit on Risk and Resilience in Mental Disorders, University of Cape Town, Cape Town, South Africa

    Dan J. Stein

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Correspondence to Andrea C. Palk .

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  1. Department of Philosophy and Religious Studies, and Science Technology and Society (STS) Program, North Carolina State University, Raleigh, NC, USA

    Veljko Dubljević

  2. Department of Philosophy, University of North Carolina, Greensboro, NC, USA

    Frances Bottenberg

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Palk, A.C., Stein, D.J. (2021). Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa: Addressing the Risk of Stigma. In: Dubljević, V., Bottenberg, F. (eds) Living with Dementia. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-62073-8_12

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