Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?

被引:24
|
作者
Ralefala, Dimpho [1 ,2 ]
Kasule, Mary [4 ]
Wonkam, Ambroise [1 ,3 ]
Matshaba, Mogomotsi [4 ,5 ]
de Vries, Jantina [1 ]
机构
[1] Univ Cape Town, Dept Med, Fac Hlth Sci, ZA-7925 Cape Town, South Africa
[2] Univ Botswana, Off Res & Dev, Gaborone, Botswana
[3] Groote Schuur Hosp, Deputy Deans Off, Fac Hlth Sci, Cape Town, South Africa
[4] Botswana Baylor Childrens Clin Ctr Excellence, Gaborone, Botswana
[5] Baylor Coll Med, Houston, TX 77030 USA
基金
美国国家卫生研究院;
关键词
Solidarity; Reciprocity; Feedback; Individual; Genetic research results; Genomics research; Botswana; Africa; SICKLE-CELL-DISEASE; INCIDENTAL FINDINGS; CONSULTING COMMUNITIES; RESEARCH PARTICIPANTS; RETURN; CARE; ENTRUSTMENT; FRAMEWORK; MEDICINE;
D O I
10.1186/s12910-020-00549-4
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
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.
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页数:11
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