Melbourne Law School, University of Melbourne, Carlton 3052, Australia.
Biomedical Ethics Research Group, Murdoch Children's Research Institute, The Royal Children's Hospital, Parkville 3052, Australia.
Per Med. 2021 May;18(3):295-310. doi: 10.2217/pme-2020-0139. Epub 2021 Apr 6.
There has been little discussion of the way genomic research results should be returned and how to obtain informed consent for this. We systematically searched the empirical literature, identifying 63 articles exploring stakeholder perspectives on processes for obtaining informed consent about return of results and/or result delivery. Participants, patients and members of the public generally felt they should choose which results are returned to them and how, ranging from direct (face-to-face, telephone) to indirect (letters, emails, web-based delivery) communication. Professionals identified inadequacies in result delivery processes in the research context. Our findings have important implications for ensuring participants are supported in deciding which results they wish to receive or, if no choice is offered, preparing them for potential research outcomes.
关于基因组研究结果应该如何返还以及如何为此获得知情同意的问题，讨论甚少。我们系统地搜索了实证文献，确定了 63 篇探讨利益攸关方对获得有关结果返还和/或结果传递的知情同意的过程的观点的文章。参与者、患者和公众普遍认为，他们应该选择返还给他们的结果以及选择返还的方式，从直接（面对面、电话）到间接（信件、电子邮件、基于网络的传递）的沟通方式。专业人员确定了研究背景下结果传递过程中的不足之处。我们的研究结果对于确保参与者在决定他们希望接收哪些结果或如果没有提供选择的情况下，为潜在的研究结果做好准备具有重要意义。
