PDF(Pubmed)
Abstract：
BACKGROUND: Genetic research can yield information that is unrelated to the study\'s objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent.
METHODS: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.
RESULTS: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.
CONCLUSIONS: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.
METHODS: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.
RESULTS: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research.
CONCLUSIONS: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.
摘要：
背景：基因研究可以产生与研究目标无关的信息，但可能与研究参与者的临床或个人兴趣有关。有一个新兴但有争议的责任返回一些遗传研究结果，然而，关于基因组研究人员和非洲大陆其他人的观点几乎没有证据。
方法：我们进行了一项大陆调查，以征求研究人员的观点，科学政策制定者和研究伦理委员会成员对非洲基因组学研究中个体遗传研究成果的反馈。
结果：共有110人参加了调查，收到了51份完整调查和59份不完整调查。使用描述性分析总结数据。总的来说,我们的受访者认为，临床上可行的个人基因研究结果应该返回给研究参与者，显然是因为参与者有权了解他们的健康状况，这也可能是研究参与得到认可的一种手段。尽管如此，需要就如何在非洲基因组学研究中返回个体遗传研究结果制定精确的指导。
结论：参与者应获得可以促进更健康生活方式的信息；只有临床上可行的结果才应返回，参与者应获得与他们的健康直接相关的所有重要信息。然而，详细的指导方针应该告知应该退回什么。H3Africa指南规定，研究人员反馈一般研究结果通常被认为是良好的做法，但是对于个体基因组研究结果是否也应该反馈，目前尚无共识。关于个人反馈什么结果的决定，如果有的话,非常具有挑战性，具体的背景对于做出适当的决定很重要。
方法：我们进行了一项大陆调查，以征求研究人员的观点，科学政策制定者和研究伦理委员会成员对非洲基因组学研究中个体遗传研究成果的反馈。
结果：共有110人参加了调查，收到了51份完整调查和59份不完整调查。使用描述性分析总结数据。总的来说,我们的受访者认为，临床上可行的个人基因研究结果应该返回给研究参与者，显然是因为参与者有权了解他们的健康状况，这也可能是研究参与得到认可的一种手段。尽管如此，需要就如何在非洲基因组学研究中返回个体遗传研究结果制定精确的指导。
结论：参与者应获得可以促进更健康生活方式的信息；只有临床上可行的结果才应返回，参与者应获得与他们的健康直接相关的所有重要信息。然而，详细的指导方针应该告知应该退回什么。H3Africa指南规定，研究人员反馈一般研究结果通常被认为是良好的做法，但是对于个体基因组研究结果是否也应该反馈，目前尚无共识。关于个人反馈什么结果的决定，如果有的话,非常具有挑战性，具体的背景对于做出适当的决定很重要。
