Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.
Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.
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DOI：
10.1038/s41436-021-01271-1
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发表时间：
2021-12
期刊：
影响因子：
--
通讯作者：
Berkman BE
中科院分区：
文献类型：
--
作者：
Schupmann W;Miner SA;Sullivan HK;Glover JR;Hall JE;Schurman SH;Berkman BE
关于在临床和研究环境中返回可采取医学行动的次要遗传发现（SF）的建议，引起了关于是否征求个人对他们的“不知道权”遗传信息的偏好的争议。这项研究有助于调查研究参与者积极决定是否接受或拒绝SF的辩论。参与者来自NIH的一项大型环境健康研究。接受SFs（n=148）或拒绝SFs（n=83）的参与者获得了有关研究人员可以返回的SFs类型的更详细信息，并有机会修改他们最初的决定。41/83例初次拒绝者（49.4%）在信息干预后选择接受SF。在这些“可逆拒绝者”中，近75%的人认为他们最初接受了SF。50.6%的初始拒绝者继续拒绝（“持续拒绝者”），表现出高度的理解，其中SF将返回干预后。拒绝的最主要原因是担心担心或悲伤（43.8%）。这项研究表明，在征求研究参与者对接受SF的偏好时，需要一个更强大的知情同意程序。我们还建议，我们的数据支持实施返回SF而不主动征求偏好的默认做法。
Proposals to return medically actionable secondary genetic findings (SFs) in the clinical and research settings have generated controversy regarding whether to solicit individuals’ preferences about their “right not to know” genetic information. This study contributes to the debate by surveying research participants who have actively decided whether to accept or refuse SFs. Participants were drawn from a large NIH environmental health study. Participants who had accepted SFs (n=148) or refused SFs (n=83) were given more detailed information about the types of SFs researchers could return and were given an opportunity to revise their original decision. 41/83 initial refusers (49.4%) opted to receive SFs following the informational intervention. Nearly 75% of these “reversible refusers” thought they had originally accepted SFs. The 50.6% of initial refusers who continued to refuse (“persistent refusers”) demonstrated high levels of understanding of which SFs would be returned post-intervention. The most prominent reason for refusing was concern about becoming worried or sad (43.8%). This study demonstrates the need for a more robust informed consent process when soliciting research participants’ preferences about receiving SFs. We also suggest that our data support implementing a default practice of returning SFs without actively soliciting preferences.
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DOI：
10.1097/gim.0b013e3181cd6689
发表时间：
2010-02
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Bussey-Jones J;Garrett J;Henderson G;Moloney M;Blumenthal C;Corbie-Smith G
通讯作者：
Corbie-Smith G
DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
4.1
作者：
Bortolotti, Lisa;Widdows, Heather
通讯作者：
Widdows, Heather
DOI：
10.1038/gim.2013.113
发表时间：
2013-11
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
5.2
作者：
Middleton, Anna;Morley, Katherine I.;Parker, Michael
通讯作者：
Parker, Michael