Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.
Cancer Risk Management Program, M Health Fairview, Minneapolis, MN, USA.
J Genet Couns. 2021 Feb;30(1):144-157. doi: 10.1002/jgc4.1304. Epub 2020 Jun 29.
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.
直接面向消费者的基因检测(DTC-GT)在美国的应用正在迅速增长。然而,人们对像国内和跨国领养者这样的特定人群如何使用 DTC-GT 知之甚少。领养者通常几乎没有生物学家族史,这可能会影响他们使用 DTC-GT 的方式。本研究旨在探讨成年领养者进行 DTC-GT 的动机、完成测试的经历以及不进行测试的原因。一项由 41 个封闭式问题组成的在线调查以滚雪球的方式分发给国内和跨国成年领养者,涵盖了七个方面:(a)人口统计学和领养经历,(b)家庭健康史,(c)对 DTC-GT 的熟悉程度,(d)实际的 DTC-GT 经历,(e)假设的 DTC-GT 经历,(f)健康结果,以及(g)对 DTC-GT 的满意度。对参与者的人口统计学和领养特征进行描述性统计,并用卡方检验和 Fisher 精确检验比较了对 DTC-GT 的熟悉程度和完成 DTC-GT 情况与人口统计学和领养特征的关系。共有 117 名领养者符合条件并完成了调查。领养者使用 DTC-GT 的动机是寻找生物学上的亲属(83.0%)、验证种族和民族(72.3%)以及了解祖先来自何处(66.0%)。大多数参与者完成了 DTC-GT(80.3%);完成情况与寻找生物学亲属(p<0.01)和年龄较大(p=0.05)显著相关。对于那些收到健康信息的人(59.6%),44.4%的参与者表示与医疗服务提供者进行了交谈。领养者正在使用 DTC-GT 寻找生物学亲属,确认他们的种族和祖先,并获取有关他们健康的信息。遗传咨询师和医疗保健专业人员应该准备好与领养者讨论 DTC-GT,因为近一半的人会与提供者讨论他们的结果;这项研究的结果提供了对这一独特群体如何使用 DTC-GT 的深入了解,以及为没有家族健康史的领养患者提供以患者为中心、量身定制的护理的可能性。