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家庭秘密:参与直接面向消费者的基因亲属寻找服务的体验和结果。

Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.

机构信息

Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Houston, TX 77030, USA.

出版信息

Am J Hum Genet. 2022 Mar 3;109(3):486-497. doi: 10.1016/j.ajhg.2022.01.013. Epub 2022 Feb 24.

Abstract

In recent decades, genetic genealogy has become popular as a result of direct-to-consumer (DTC) genetic testing. Some DTC genetic testing companies offer genetic relative-finder (GRF) services that compare the DNA of consenting participants to identify genetic relatives among them and provide each participant a list of their relative matches. We surveyed a convenience sample of GRF service participants to understand the prevalence of discoveries and associated experiences. Almost half (46%) of the 23,196 respondents had participated in GRF services only for non-specific reasons that included interest in building family trees and general curiosity. However, most (82%) also learned the identity of at least one genetic relative. Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. Respondents generally reported that discovering this new information had a neutral or positive impact on their lives, and most had low regret regarding their decision to participate in GRF services. Yet some reported making life changes as a result of their discoveries. Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves. Our findings indicate that discoveries from GRF services may be common and that the consequences for individuals, while generally positive, can be far-reaching and complex.

摘要

近几十年来,由于直接面向消费者(DTC)的基因检测,基因家谱学变得流行起来。一些 DTC 基因检测公司提供基因亲属搜索(GRF)服务,将同意参与的参与者的 DNA 进行比较,以确定他们之间的遗传亲属关系,并为每个参与者提供一份他们的亲属匹配列表。我们对 GRF 服务参与者进行了一项方便样本调查,以了解发现的普遍性和相关体验。在 23196 名受访者中,近一半(46%)的人仅出于非特定原因(包括对建立家谱和一般好奇心的兴趣)参加了 GRF 服务。然而,大多数(82%)人也至少了解了一个遗传亲属的身份。此外,大多数受访者(61%)报告说,他们了解到自己或亲属的一些新信息,包括可能具有破坏性的信息,例如他们认为是亲生父母的人实际上并非亲生父母,或者他们有一个以前不知道的兄弟姐妹。受访者普遍表示,发现这些新信息对他们的生活产生了中性或积极的影响,大多数人对参与 GRF 服务的决定感到后悔。然而,一些人报告说,他们的生活因发现而发生了变化。与那些做出其他类型发现的受访者相比,那些得知自己是捐赠受孕的人报告的决策后悔程度最高,代表了报告对自己有净负面影响的最大比例。我们的研究结果表明,GRF 服务的发现可能很常见,尽管对个人的影响总体上是积极的,但可能影响深远且复杂。

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