Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.
Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.
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DOI：
10.1186/s12910-021-00724-1
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发表时间：
2021-11-19
影响因子：
2.7
通讯作者：
Sewankambo NK
中科院分区：
文献类型：
--
作者：
Ochieng J;Kwagala B;Barugahare J;Mwaka E;Ekusai-Sebatta D;Ali J;Sewankambo NK
遗传学和基因组学研究成果的归还一直是全球正在进行的辩论的主题。这样的反馈在伦理上是可取的，以使参与者了解最新的研究结果，特别是那些被认为具有临床意义的研究结果。尽管文献有限，但在非洲，关于什么构成返回遗传学和基因组研究成果的适当做法的辩论仍在继续。这项研究探讨了乌干达基因组研究人员对归还遗传学和基因组学研究成果的观点和伦理考虑。这是一项定性研究，采用了深入访谈的方法。30名参与者是根据他们作为乌干达基因组研究人员的专业知识被有目的地挑选出来的。使用综合主题矩阵，根据研究的主要主题，通过内容分析对数据进行分析，以确定叙述产生的共同模式。使用NVivo软件12支持数据分析。遗传学和基因组学研究成果的退还一般为研究人员所接受，一些人表示，他们以前曾向参与者和社区退还过个别或综合结果。与参与者分享研究结果的主要原因包括其临床实用性、可操作性和对社会的总体好处。适当返回结果的伦理考虑包括需要有效的社区参与、在公布结果之前的遗传咨询、充分的知情同意以及对返回结果的影响或后果进行适当的评估。然而，由于缺乏适当的监管框架，返回结果的办法被认为是不标准化的。尽管缺乏适当的监管框架，但基因和基因组研究成果的返还通常为研究人员所接受。关于返还遗传学和基因组学研究成果的伦理考虑是高度不同的，因此需要国家伦理准则来适当地规范这一做法。网上版载有补充材料，可在10.1186/s12910-021-00724-1查阅。
The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice. The online version contains supplementary material available at 10.1186/s12910-021-00724-1.
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