Using the Drama of DNA approach to community engagement in genomic research in South Africa: experiences and lessons learnt

Abstract

In the context of African genomics research, community engagement has emerged as a powerful means to enhance genomic education of the public and anticipate ethical challenges in relation to increasing genomic research on the African continent. We report our experiences of using narrative genomics, a drama-based community engagement method, to engage scientific and lay communities about ethical and social challenges related to the return of individual genetic research results in genomic research. The method uses set scripts, which audience members act out and thereafter engage in a series of ethical dilemmas presented in the script. In this paper, we describe the steps we took to change the original scripts to make them more suitable for a South African audience. We found the method to be relatively effective at engaging audiences in South Africa. While the changes in the South African versions appear minor, through our experience in trying to change the scripts to make them relatable to a South African audience, we observed that were limits to how much of the script we could change if the narrative was still to be effective as a community engagement method. While this method and the original scripts are incredibly helpful, new scripts must be developed for African audiences, and these could potentially be more impactful as a community engagement tool in different local contexts.

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

“…Views on community engagement and the informed consent process emerged prominently in this study. Community engagement is a key ethical requirement in genetic and genomic research (Faure et al, 2020;Moodley & Beyer, 2019;Staunton et al, 2018;Tindana et al, 2017;Tindana et al, 2015). The Uganda national ethics guidelines also recognize this and recommend community engagement "right from the inception of research to post research period" (UNCST, 2014).…”

Addressing underrepresentation in genomics research through community engagement

“…However, there is no one right way to conduct community engagement, and not all methodologies are transferable to every research project, population, and set up. 20,[50][51][52][53][54][55][56] Nevertheless, certain aspects of community engagement are important to consider throughout the research cycle. Table 1 highlights the collaborative nature of research with the community of interest and outlines some of the steps that will facilitate respectful engagement and ultimately more successful research efforts.…”

Public engagement with genomics

“…Similarly, positive attitudes to research can stem from a belief that participation in genomics will help family members 35 and society more widely 35 , 44 , help individuals prepare for the future 45 or inform decision-making (e.g., around reproductive health) 43 . In general, those that see contributing to genetic studies as important in creating scientific and medical progress have more favourable views about the science 20 , 40 , 46 .…”

“…Indeed, members of the public with more personal experience of genetics in relation to health and disease in their family 17 , 35 , 38 – 40 , 49 have more positive attitudes toward genetics and genomics but also have more concerns about how genetic data are used. There are also fears over genetic discrimination (e.g., from employers or insurers) 17 , 34 , 35 , 41 , 47 – 49 , and concerns around the perception that DNA data can be used against individuals, for example, if it were to be planted at the scene of a crime 17 , 46 .…”