Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics
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RESEARCH ARTICLE
Open Access
Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research? Dimpho Ralefala1,2* , Mary Kasule4, Ambroise Wonkam1,3, Mogomotsi Matshaba4,5 and Jantina de Vries1
Abstract Background: 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. 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. Methods: In 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. Results: Findings 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. Conclusions: We conclude that expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic research results in African genomics research. Keywords: Solidarity, Reciprocity, Feedback, Individual, Genetic research results, Genomics research, Botswana, Africa Background 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 some researchers have expressed a concern that feeding back individual genetic research results contravenes the traditional goal of producing *Correspondence: [email protected]; [email protected] 1 Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town 7925, South Africa Full list of author information is available at the end of the article
generalizable knowledge for the good of society [2], there appears to be a growing consensus regarding both moral and legal obligations of researchers, to feedback particular results [3–5]. Key values that are discussed in this literature are respect, autonomy, charity, mutuality, and reciprocity [6]. Amongst the plethora of papers that have commented on issues relating to the feedback of individual genetic results in g
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