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Adult adoptees and their use of direct‐to‐consumer genetic testing: Searching for family, searching for health
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-06-29 , DOI: 10.1002/jgc4.1304
Heewon Lee 1, 2 , Rachel I Vogel 3 , Bonnie LeRoy 1 , Heather A Zierhut 1
Affiliation  

Use of direct‐to‐consumer genetic testing (DTC‐GT) is rapidly growing in the United States. Yet little is known about how specific populations like domestic and intercountry adoptees use DTC‐GT. Adoptees often have little to no biological family history, which may affect how they use DTC‐GT. This study aimed to examine adult adoptees' motivations to pursue DTC‐GT, experiences completing a test, and reasons for not completing one. An online survey consisting of 41 closed‐ended questions was distributed to domestic and intercountry adult adoptees in a snowball convenience method addressing seven areas: (a) demographics and adoption experience, (b) family health history, (c) familiarity with DTC‐GT, (d) actual DTC‐GT experience, (e) hypothetical DTC‐GT experience, (f) health results, and (g) satisfaction with DTC‐GT. Descriptive statistics were performed on participant demographics and adoption characteristics, and chi‐squared and Fisher's exact tests compared demographics and adoption characteristics by familiarity with DTC‐GT and completion of DTC‐GT. A total of 117 adoptees met criteria and completed the survey. Adoptees were motivated to use DTC‐GT to search for biological family (83.0%), verify race and ethnicity (72.3%), and find out where ancestors came from (66.0%). Most participants completed DTC‐GT (80.3%); completion was significantly associated with searching for biological relatives (p < 0.01) and with older age (p = 0.05). For those who received health information (59.6%), 44.4% of participants reported talking with a health provider. Adoptees are using DTC‐GT to search for biological relatives, confirm their ethnicity and ancestry, and gain information about their health. Genetic counselors and health professionals should be prepared to address DTC‐GT with adoptees as nearly half discussed their results with providers; findings from this study provide insight into how this unique population uses DTC‐GT, and the possibility of patient‐centered, tailored care for adopted patients who do not have family health history.

中文翻译:

成年被收养者及其直接面向消费者基因检测的使用:寻找家人,寻找健康

在美国,直接面向消费者的基因检测 (DTC-GT) 的使用正在迅速增长。然而,对于国内和跨国收养者等特定人群如何使用 DTC-GT 知之甚少。被收养者通常几乎没有家族史,这可能会影响他们使用 DTC-GT 的方式。本研究旨在调查成年收养者追求 DTC-GT 的动机、完成测试的经历以及未完成测试的原因。一项由 41 个封闭式问题组成的在线调查以滚雪球便利的方式分发给国内和跨国成年收养者,涉及七个方面:(a)人口统计和收养经验,(b)家庭健康史,(c)熟悉 DTC-GT (d) 实际 DTC-GT 体验,(e) 假设 DTC-GT 体验,(f) 健康结果,以及 (g) 对 DTC-GT 的满意度。对参与者人口统计和采用特征进行描述性统计,卡方检验和 Fisher 精确检验通过熟悉 DTC-GT 和完成 DTC-GT 来比较人口统计和采用特征。共有 117 名被收养者符合标准并完成了调查。被收养者被激励使用 DTC-GT 来搜索生物家族 (83.0%),验证种族和民族 (72.3%),并找出祖先来自哪里 (66.0%)。大多数参与者完成了 DTC-GT (80.3%);完成与寻找生物学亲属显着相关(共有 117 名被收养者符合标准并完成了调查。被收养者被激励使用 DTC-GT 来搜索生物家族 (83.0%),验证种族和民族 (72.3%),并找出祖先来自哪里 (66.0%)。大多数参与者完成了 DTC-GT (80.3%);完成与寻找生物学亲属显着相关(共有 117 名被收养者符合标准并完成了调查。被收养者有动机使用 DTC-GT 搜索生物家族 (83.0%),验证种族和民族 (72.3%),并找出祖先来自哪里 (66.0%)。大多数参与者完成了 DTC-GT (80.3%);完成与寻找生物学亲属显着相关(p  < 0.01) 和年龄较大 ( p  = 0.05)。对于那些收到健康信息的人 (59.6%),44.4% 的参与者报告与健康提供者交谈。被收养者正在使用 DTC-GT 寻找生物亲属,确认他们的种族和血统,并获取有关他们健康的信息。遗传咨询师和卫生专业人员应准备好与被收养者一起解决 DTC-GT,因为近一半的人与提供者讨论了他们的结果;这项研究的发现让我们深入了解这个独特的人群如何使用 DTC-GT,以及为没有家族健康史的收养患者提供以患者为中心的、量身定制的护理的可能性。
更新日期:2020-06-29
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