Practical and Ethical considerations for the return of individual genetic research findings from WES studies

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Project Summary IFGeneRA Project 3 Whilst approaches to the feedback of individual genetic research results in African genomics research are changing, there are a number of important practical and ethical challenges that need to be considered before African genomics researchers can develop meaningful genomic returns policies. These relate to the absence of a clear understanding of a) the scope of the problem, b) the financial impact of a returns policy on research, and c) a normative account of the impact of resource restrictions on researcher obligations to return study results. In this component of our Collaborative Centre, we combine bioinformatics, health economics and normative ethical enquiry to generate greater insight into the scope, likely impact, and normative obligations for feeding back individual genetic findings in African genomics research. In addition, and in an attempt to bring together the work of the entire Collaborative Centre, we will conduct a continent-wide survey study in which we integrate insights from all three projects to explore their wider acceptability. Our study aims are the following: Aim 1: to generate practical evidence about the scope and likely financial impact of decisions to return individual genetic research results to participants in genomics research in Cameroon and Botswana. Under Aim 1, we will follow a staged research design to a) generate a list of reportable pathogenic findings pertinent to African populations, b) explore how often these variants are found in existing H3Africa WES datasets, and c) investigate the budget implications that feeding back these findings would have for two genomic studies. Aim 2: to develop a normative account of obligations to (not) feedback individual genetic findings for researchers in low- and middle income countries and how these obligations play out in the context of resource-restrained healthcare and research settings. Under Aim 2, we will conduct a literature study followed by normative analysis to understand the ethical obligations for returning results for research for African researchers. Aim 3: To explore the views of people involved in developing, implementing or applying return of results policies across the African continent, drawing on the findings from all projects in the IFGeneRA ELSI Collaborative Centre. Under Aim 3, we will develop a survey based on the insights generated throughout the IFGeneRA projects (1- 3), and send this survey to pertinent stakeholders across the African continent.