Abstract
BackgroundA key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus.MethodsIn this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study in Botswana on how solidarity and reciprocity obligations could guide decisions about feedback of individual genetic research results. Data were collected using deliberative focus group discussions and in-depth interviews.ResultsFindings from 93 participants (44 adolescents and 49 parents and caregivers) demonstrated the importance of considering solidarity and reciprocity obligations in decisions about the return of individual genetic research results to participants. Participants viewed research participation as a mutual relationship and expressed that return of research results would be one way in which research participation could be reciprocated. They noted that when reciprocity obligations are respected, participants feel valued and not respecting reciprocity expectations could undermine participant trust and participation in future studies.ConclusionsWe conclude that expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic research results in African genomics research.
Highlights
A key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when
Feedback of individual genetic research results to research participants has increasingly become a topic of debate in bioethics, not in the least because such results may be relevant to the health of participants and their families [1]
Whilst they gave a range of reasons to support this view, what seemed to lie at the basis of these views were expectations of solidarity and reciprocity
Summary
A key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Richardson and Cho [12] elaborate an entrustment model for the return of results, in which they premise an obligation to return results on the inability of participants to afford or access healthcare through other means. As such, this account is premised on participants’ vulnerability, with the vulnerability arising out of poverty. Of note is that all of these accounts seem to be specific to genomics research that is led by principal investigators based in high-income countries (HICs) where the main question is whether and to what extent HIC researchers have an obligation to return results to participants in poorer countries [8,9,10, 12]
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