Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?
Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?
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DOI：
10.1186/s12910-020-00549-4
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发表时间：
2020-11-04
影响因子：
2.7
通讯作者：
de Vries J
中科院分区：
文献类型：
--
作者：
Ralefala D;Kasule M;Wonkam A;Matshaba M;de Vries J
基因组学研究中的一个关键伦理问题涉及是否应向研究参与者披露个人基因研究结果，如果是，哪些结果应披露，由谁披露，何时披露。虽然这一问题在非洲生物伦理学讨论中只得到很少的关注，但基因组学研究向非洲大陆的延伸使其成为焦点。在这项定性研究中，我们研究了参与博茨瓦纳儿科和青少年艾滋病毒-结核病基因组研究的青少年，父母和照顾者的意见，关于团结和互惠义务如何指导个人遗传研究结果反馈的决定。数据收集使用审议焦点小组讨论和深入访谈。来自93名参与者（44名青少年和49名父母和照顾者）的调查结果表明，在决定将个人遗传研究结果返还给参与者时，考虑团结和互惠义务的重要性。与会者将研究参与视为一种相互关系，并表示返还研究成果将是研究参与可以得到回报的一种方式。他们指出，当互惠义务得到尊重时，参与者会感到受到重视，不尊重互惠期望可能会破坏参与者的信任和对未来研究的参与。我们的结论是，团结和互惠的期望可以转化为一种义务，在非洲基因组学研究中反馈选定的个人遗传研究结果。
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. 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. 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. 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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影响因子：
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