Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank
Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank
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DOI：
10.1111/jlme.12289
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发表时间：
2015-09-01
影响因子：
2.1
通讯作者：
Koenig, Barbara A.
中科院分区：
文献类型：
--
作者：
Breitkopf, Carmen Radecki;Petersen, Gloria M.;Koenig, Barbara A.
关于参与者对遗传研究成果归还亲属的看法，包括在参与者死亡后归还的看法，缺乏数据。本文报告了来自3，630名调查受访者的描述性结果：464名胰腺癌生物库参与者，1，439名家庭登记参与者和1，727名健康个体。我们的研究结果表明，大多数参与者会觉得有义务在活着的时候与血亲分享他们的结果，并希望在他们死后与亲属分享结果。
Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.