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

Abstract

BackgroundCommunity 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.DiscussionFour 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.SummaryThe 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.

Implementation of genomics research in Africa: challenges and recommendations

“…Recruitment of study participants depends to a large extent on buy-in from local communities in the target population [22]. Therefore engaging community members and stakeholders in the planning phase has become an important aspect of research projects [23].…”

A Culture of Understanding: Reflections and Suggestions from a Genomics Research Community Board

“…Many of us also echoed concerns about engaging marginalized communities in genomics research given limited health and genomics literacy, 6 as well as resistance within the Black community. A Black community clinician remarked that some Blacks would prefer “keeping their heads in the sand” instead of seeking out information about their own health.…”

“…5,6 It can be difficult to engage marginalized communities in genomics and precision medicine research, due both to familiar barriers to community engagement (e.g., mistrust) and more genomic-specific challenges (e.g., its highly technical language). 6,7 Unfortunately, there is limited information available regarding formation of substantive collaborations to navigate the complex intersection of ancestry, race, genomics and health.…”

Ethical Implications of Mental Health Stigma: Primary Health Care Providers’ Perspectives

“…The Preceded information ascertained that stigma associated with mental illness have many ethical implications in the context of Responsible Conduct of research (RCR). These ethical implications can be seen in the form of issues related to consent form (Fisher & Oransky, 2008;Vaz & Srinivasan, 2014), fair treatment and good respect for individual rights concerning treatment choices (Carrier, Banayan, Boley, & Karnik, 2017;Corcoran, 2016), use of various forms of treatments, participation in the clinical studies at the national level and issue of possible use of data for national or governmental purpose (Alahmad, Al-Jumah, & Dierickx, 2012;Ayalon, Karkabi, Bleichman, Fleischmann, & Goldfracht, 2015;Campbell et al, 2015;Sharma et al, 2013;Vaz & Srinivasan, 2014). Indeed, scientific researchers and those who are conducting research studies about mental health in the primary health care settings (Dubois et al, 2011); must consider the applications of ethical standards as suggested by RCR with cautions.…”