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

Overview of attention for article published in BMC Medical Ethics, July 2015
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Title
Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study
Published in
BMC Medical Ethics, July 2015
DOI 10.1186/s12910-015-0037-5
Pubmed ID
Authors

Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar, Dan J. Stein

Abstract

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. 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. 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.

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Mendeley readers

The data shown below were compiled from readership statistics for 76 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Sierra Leone 1 1%
South Africa 1 1%
Unknown 74 97%

Demographic breakdown

Readers by professional status Count As %
Student > Master 16 21%
Researcher 11 14%
Student > Ph. D. Student 10 13%
Student > Doctoral Student 8 11%
Student > Bachelor 8 11%
Other 20 26%
Unknown 3 4%
Readers by discipline Count As %
Medicine and Dentistry 19 25%
Psychology 12 16%
Social Sciences 11 14%
Nursing and Health Professions 10 13%
Agricultural and Biological Sciences 4 5%
Other 13 17%
Unknown 7 9%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 28 March 2017.
All research outputs
#10,133,045
of 11,428,083 outputs
Outputs from BMC Medical Ethics
#464
of 482 outputs
Outputs of similar age
#193,203
of 235,318 outputs
Outputs of similar age from BMC Medical Ethics
#15
of 15 outputs
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