Preferences and expectations of feedback of individual genetic research results in African genomics: Views of South African parents of children with neurodevelopmental disorders

Abstract

Background: Genomic research is expanding at an exponential pace across the globe and increased access to genome analysis has led to greater generations of genetic results with specific relevance to individuals. This study aims to explore preferences and expectations of feedback of individually relevant genetic research results among parents of children with neurodevelopmental conditions. Methods: Following a qualitative approach, we conducted four deliberative focus group discussions with (n=27) South African parents of children involved in genomics research on neurodevelopmental disorders. Results: Most participants expressed a strong interest in receiving genetic results regardless of severity, actionability and preventability. These results were viewed as valuable because they could empower or emancipate individuals, families, and communities. Receiving risk information was also believed to motivate healthier lifestyle choices. However, some participants were uncertain or articulated a desire not to receive results due to fears of anxiety or psychological distress. In addition, participants expected to receive results as a demonstration of respect from researchers and articulated it as an act to build trust between researchers and participants. Conclusions: Internationally, a debate continues around whether individually relevant genetic results should or should not be fed back to participants of genomic research studies. In Africa, there is scant literature which has investigated this question and no policies to guide researchers. This study provides a basis of empirical data on perspectives of African participants which could inform work on the development of a consolidated approach to the feedback of genetic research results in the continent.