Developing the science and methods of community engagement for genomic research and biobanking in Africa

Abstract

Historically, community engagement (CE) in research has been implemented in the fields of public health, education and agricultural development. In recent years, international discussions on the ethical and practical goals of CE have been extended to human genomic research and biobanking, particularly in the African context. While there is some consensus on the goals and value of CE generally, questions remain about the effectiveness of CE practices and how to evaluate this. Under the auspices of the Human Heredity and Health in Africa Initiative (H3Africa), the H3Africa CE working group organized a workshop in Stellenbosch, South Africa in March 2016 to explore the extent to which communities should be involved in genomic research and biobanking and to examine various methods of evaluating the effectiveness of CE. In this paper, we present the key themes that emerged from the workshop and make a case for the development of a rigorous application, evaluation and learning around approaches for CE that promote a more systematic process of engaging relevant communities. We highlight the key ways in which CE should be embedded into genomic research and biobanking projects.

Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking

“…9,13,59,60 Despite the importance of CE in general and in genomic biobanking in particular, there is a dearth of research on this topic in resource-poor settings. 32,61,62 Neither is there a suitable CE model. Consequently, we set out to develop a model based on our own research experiences in CE over the past 15 years, a literature review and empirical research in this field in a South African setting over the past 4 years.…”

“…2 Since mon-etary incentives have not been shown to increase recruitment, this needs to be discussed in the context of existing guidelines. 61 Early engagement is a sign of respect as the community is then aware that they are not being involved as an afterthought. A culture and relationship of trust can be built and maintained by demonstrating the value the research team sees in members of the community, beyond their involvement in any specific study.…”

Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications

“…While still in its relative infancy, over the last few years a number of theoretical and empirical papers have been published that explore the methods and goals of community engagement for genomics and biobanking research in Africa. Broadly, authors ascribe the following goals to community engagement in this context: to increase community understanding of the projects conducted; to strengthen the consent process by sensitising prospective participants before they are asked to enrol in research; to identify and respect community values; to assist in the design of culturally appropriate research methods; and also as a means for health education about the conditions in the genomic study (Tindana et al, 2015;Singh et al, 2017;Tindana et al, 2017). One interesting approach to community engagement, which aims to augment the effectiveness of engagement activities in terms of all these stated goals, is to co-design community engagement and qualitative research in a community-based participatory approach.…”

“…Such an approach may have greater potential to influence the translation of research findings into health policy, and has greater potential to contextualise research than community engagement activities alone. Despite these broad goals attributed to community engagement, in the context of African genomics research community engagement seems to primarily be considered as a way to facilitate recruitment (Tindana et al, 2015;Tindana et al, 2017).…”

Understanding biobanking: An assessment of the public engagement speaking book intervention Biobanking and Me

“…and biobanking, and the ethical, legal and social implications of their scientific research, participants and community members who are the potential sample donors may find these concepts difficult to understand. [12,13] Difficulty understanding these concepts, the technical nature of consent forms used in genetic research and the prevalence of illiteracy create a barrier to obtaining true informed consent from research participants. Engaging communities with a view to improve understanding of research principles would allow individuals to negotiate from a position of strength.…”