研究人员对向研究参与者反馈个人基因检测结果的看法:一项定性研究。
Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.
作者信息
Mwaka Erisa Sabakaki, Sebatta Deborah Ekusai, Ochieng Joseph, Munabi Ian Guyton, Bagenda Godfrey, Ainembabazi Deborah, Kaawa-Mafigiri David
机构信息
College of Health Sciences, Makerere University, Kampala, Uganda.
College of Humanities and Social Sciences, Makerere University, Kampala, Uganda.
出版信息
Glob Bioeth. 2021 Mar 9;32(1):15-33. doi: 10.1080/11287462.2021.1896453.
Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers' perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.
尽管乌干达研究参与者对基因检测结果的需求不断增加,但基因检测结果通常不会反馈给他们。我们报告了研究人员对反馈个人基因研究结果的看法和经历。该研究对15名从事遗传学和/或基因组研究的调查人员进行了深入访谈。采用主题分析法对结果进行解读。数据中出现的四个主题是反馈个人检测结果(包括偶发发现)的必要性、社区参与和知情同意过程、反馈个人检测结果的影响和挑战。虽然研究人员愿意向研究参与者反馈具有临床意义的基因检测结果,但他们仍不确定应如何实施。有助于实施结果反馈的建议包括在收到个人基因检测结果之前重新征求参与者的意见,以及增加获得基因咨询服务的机会。社区参与以确定社区对结果反馈的看法和个人偏好,并让参与者做好安全接收结果的准备,这是支持结果反馈的另一种方式。研究人员对向研究参与者反馈具有临床意义的基因检测结果持积极态度。有必要制定关于基因研究的国家指南,并加强临床遗传学和基因咨询的能力建设。