Olivia P Matshabane1, Megan M Campbell2, Marlyn C Faure3, Paul S Appelbaum4, Patricia A Marshall5, Dan J Stein6, Jantina de Vries7. 1. Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. Electronic address: olivia.matshabane@uct.ac.za. 2. Department of Psychiatry and Mental Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa; Department of Psychology, Rhodes University, Grahamstown, South Africa. Electronic address: m.campbell@ru.ac.za. 3. Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. Electronic address: marlyn.faure@gmail.com. 4. Department of Psychiatry, Columbia University, Irving Medical Center, New York, United States; New York State Psychiatric Institute, New York, United States. Electronic address: paul.appelbaum@nyspi.columbia.edu. 5. Department of Anthropology, Case Western Reserve University, Cleveland, United States. Electronic address: pam20@case.edu. 6. Department of Psychiatry & Neuroscience Institute, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa; SA MRC Unit on Risk & Resilience in Mental Disorders, Cape Town, South Africa. Electronic address: dan.stein@uct.ac.za. 7. Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. Electronic address: jantina.devries@uct.ac.za.
Abstract
INTRODUCTION: Advances in genomics research have raised several ethical concerns. One concern is the potential impact of genomics research on stigma experienced by people affected by a disease. Studies have found that the type of illness as well as disease causal beliefs impact on the relation between genetic attribution and stigma. This study explored the potential impact of genetic attribution of disease on stigma among Xhosa people with Rheumatic Heart Disease (RHD). METHODS: Study participants were 46 Xhosa people with RHD living in the Western Cape Province of South Africa. Using video vignettes in 7 focus group discussions we explored whether and how genetic attribution may impact on disease-stigma. Vignettes introduced participants to non-genetic and genetic causal explanations and were followed-up with a series of open-ended questions eliciting their perceptions of non-genetic disease causes as well as genetic causation and its impact on internalised stigma. RESULTS: This study found that Xhosa people with RHD have a general understanding of genetics and genetic attribution for disease. Additionally, and not withstanding their genetic knowledge, these participants hold multiple disease causal beliefs including genetic, infectious disease, psychosocial, behavioural and cultural explanations. While there was evidence of internalised stigma experiences among participants, these appeared not to be related to a genetic attribution to the disease. DISCUSSION: The findings of this study provide clues as to why it is unlikely that a genetic conceptualisation of disease impacts internalised stigma experiences of Xhosa people. The causal explanations provided by participants reflect their cultural understandings and their context, namely, living in low-income and poverty-stricken environments. Divergence in these findings from much of the evidence from high-income countries emphasises that context matters when considering the impact of genetic attribution on stigma and caution against generalising findings from one part of the globe to another.
INTRODUCTION: Advances in genomics research have raised several ethical concerns. One concern is the potential impact of genomics research on stigma experienced by people affected by a disease. Studies have found that the type of illness as well as disease causal beliefs impact on the relation between genetic attribution and stigma. This study explored the potential impact of genetic attribution of disease on stigma among Xhosa people with Rheumatic Heart Disease (RHD). METHODS: Study participants were 46 Xhosa people with RHD living in the Western Cape Province of South Africa. Using video vignettes in 7 focus group discussions we explored whether and how genetic attribution may impact on disease-stigma. Vignettes introduced participants to non-genetic and genetic causal explanations and were followed-up with a series of open-ended questions eliciting their perceptions of non-genetic disease causes as well as genetic causation and its impact on internalised stigma. RESULTS: This study found that Xhosa people with RHD have a general understanding of genetics and genetic attribution for disease. Additionally, and not withstanding their genetic knowledge, these participants hold multiple disease causal beliefs including genetic, infectious disease, psychosocial, behavioural and cultural explanations. While there was evidence of internalised stigma experiences among participants, these appeared not to be related to a genetic attribution to the disease. DISCUSSION: The findings of this study provide clues as to why it is unlikely that a genetic conceptualisation of disease impacts internalised stigma experiences of Xhosa people. The causal explanations provided by participants reflect their cultural understandings and their context, namely, living in low-income and poverty-stricken environments. Divergence in these findings from much of the evidence from high-income countries emphasises that context matters when considering the impact of genetic attribution on stigma and caution against generalising findings from one part of the globe to another.
Authors: Toby Epstein Jayaratne; Susan A Gelman; Merle Feldbaum; Jane P Sheldon; Elizabeth M Petty; Sharon L R Kardia Journal: Rev Gen Psychol Date: 2009-03-01
Authors: Jantina de Vries; Muminatou Jallow; Thomas N Williams; Dominic Kwiatkowski; Michael Parker; Raymond Fitzpatrick Journal: Soc Sci Med Date: 2012-06-16 Impact factor: 4.634