Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study

BMC Medical Ethics

Dan J. Stein²  Raj S. Ramesar⁴  Odwa A. Ntola²  Sibonile G. Mqulwana²  Michael M. Mndini²  Goodman Sibeko²  Adam Baldinger²  Jantina de Vries¹  Ezra Susser³  Megan M. Campbell² 

[1] Department of Medicine, University of Cape Town, Cape Town, South Africa;Department of Psychiatry and Mental Health, University of Cape Town, J-Block, Groote Schuur Hospital, Observatory, Cape Town, South Africa;Mailman School of Public Health, Columbia University and New York State Psychiatric Institute, New York, NY, USA;MRC Human Genetics Research Unit, Division of Human Genetics, Institute of Infectious Disease and Molecular Medicine, Department of Clinical Laboratory Science, University of Cape Town, Cape Town, South Africa

关键词: Xhosa;    Schizophrenia;    Community advisory board;    Genomics research;    Community engagement;   

Others  :  1218613
DOI  :  10.1186/s12910-015-0037-5

 received in 2014-09-05, accepted in 2015-06-05,  发布年份 2015

【 摘 要 】

Background

Community engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board (CAB) is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.

Discussion

Four broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.

Summary

The CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants.

【 授权许可】

   
2015 Campbell et al.

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