Marlyn C Faure1, Olivia P Matshabane2, Patricia Marshall3, Paul S Appelbaum4, Dan J Stein5, Mark E Engel6, Jantina de Vries7. 1. Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa. Electronic address: marlyn.faure@uct.ac.za. 2. Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa. Electronic address: Olivia.Matshabane@uct.ac.za. 3. Department of Bioethics, Case Western Reserve University, USA. Electronic address: pam20@case.edu. 4. Department of Psychiatry, Columbia University, USA. Electronic address: psa21@columbia.edu. 5. SA MRC Unit on Risk & Resilience in Mental Disorders, Department of Psychiatry and Neuroscience Institute, Faculty of Health Sciences, University of Cape Town, South Africa. Electronic address: dan.stein@uct.ac.za. 6. Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa. Electronic address: mark.engel@uct.ac.za. 7. Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa. Electronic address: jantina.devries@uct.ac.za.
Abstract
INTRODUCTION: A common concern in African genomic research is that such work may cause, or increase, stigma associated with particular diseases or population groups. While there is some evidence suggesting that genetic attribution of disease might impact stigma, there exists no evidence for the situation in African populations. With increasing genomic research in African populations, questions about the effect of genetic attribution on disease-related stigma are salient for stakeholders involved in implementation and regulation. To understand better the relationship between stigma and genetic attribution, we interviewed people with Rheumatic Heart Disease (RHD) in the Western Cape of South Africa. METHOD: We conducted 11 focus group discussions with RHD patients of mixed-ancestry in the Western Cape, exploring the impact of genetic attribution on stigma. Participants had previously consented to participate in genomic research, attending information sessions on genetics. We explored the impact of genetic attribution by introducing both genetic and environmental causes to RHD and by specifically probing how these various causes would likely impact selected features of disease stigma. RESULTS: Participants reported varying experiences of stigma relating to RHD, such as labelling, social exclusion and discrimination at the workplace. They had some understanding of genetics, either in general, or in relation to their illness. Participants' understanding depicted multiple causal models to explain RHD including genetic, environmental and bacterial causation. Overall, participants did not make a connection between genetics as a cause of RHD and their experiences of stigma. DISCUSSION: In this study we found no support for the concern that genetic attribution of RHD, understood by participants in our study as a genetic predisposition to developing the disease, would impact stigma associated with it. Our findings provide some reassurance that genomic research may be unlikely to cause an increase in disease-related stigma in the South African context.
INTRODUCTION: A common concern in African genomic research is that such work may cause, or increase, stigma associated with particular diseases or population groups. While there is some evidence suggesting that genetic attribution of disease might impact stigma, there exists no evidence for the situation in African populations. With increasing genomic research in African populations, questions about the effect of genetic attribution on disease-related stigma are salient for stakeholders involved in implementation and regulation. To understand better the relationship between stigma and genetic attribution, we interviewed people with Rheumatic Heart Disease (RHD) in the Western Cape of South Africa. METHOD: We conducted 11 focus group discussions with RHDpatients of mixed-ancestry in the Western Cape, exploring the impact of genetic attribution on stigma. Participants had previously consented to participate in genomic research, attending information sessions on genetics. We explored the impact of genetic attribution by introducing both genetic and environmental causes to RHD and by specifically probing how these various causes would likely impact selected features of disease stigma. RESULTS:Participants reported varying experiences of stigma relating to RHD, such as labelling, social exclusion and discrimination at the workplace. They had some understanding of genetics, either in general, or in relation to their illness. Participants' understanding depicted multiple causal models to explain RHD including genetic, environmental and bacterial causation. Overall, participants did not make a connection between genetics as a cause of RHD and their experiences of stigma. DISCUSSION: In this study we found no support for the concern that genetic attribution of RHD, understood by participants in our study as a genetic predisposition to developing the disease, would impact stigma associated with it. Our findings provide some reassurance that genomic research may be unlikely to cause an increase in disease-related stigma in the South African context.
Authors: Olivia P Matshabane; Megan M Campbell; Marlyn C Faure; Paul S Appelbaum; Patricia A Marshall; Dan J Stein; Jantina de Vries Journal: Soc Sci Med Date: 2021-04-07 Impact factor: 5.379