Do Solidarity and Reciprocity Obligations Compel African Researchers to Feedback Individual Genetic Results in Genomics Research?

Overview

Journal BMC Med Ethics

Publisher Biomed Central

Specialty Medical Ethics

Date 2020 Nov 5

PMID 33148222

Citations 19

Authors

Dimpho Ralefala

Mary Kasule

Ambroise Wonkam

Mogomotsi Matshaba

Jantina de Vries

Affiliations

Soon will be listed here.

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.

Citing Articles

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Solidarity and its decoloniality in global health ethics.

Fayemi A, Kirchhoffer D, Pratt B Int J Equity Health. 2025; 24(1):13.

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Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.

Musvipwa F, Wonkam A, Berkman B, de Vries J BMC Med Ethics. 2024; 25(1):67.

PMID: 38849807 PMC: 11157929. DOI: 10.1186/s12910-024-01068-2.

Proxies of Trustworthiness: A Novel Framework to Support the Performance of Trust in Human Health Research.

Harvey K, Laurie G J Bioeth Inq. 2024; 21(4):625-645.

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Research participants' perspectives regarding the feedback of secondary findings-A cohort from the DDD-Africa study, South Africa.

Shingwenyana B, Rossouw B, Thom J, Louw N, Krause A, Lombard Z J Genet Couns. 2023; 33(6):1176-1190.

PMID: 37965991 PMC: 11093881. DOI: 10.1002/jgc4.1830.

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