Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
J Med Genet. 2022 Feb;59(2):197-203. doi: 10.1136/jmedgenet-2020-107503. Epub 2020 Dec 21.
Adoptees are a population that could benefit from genetic testing to fill gaps in family health history (FHH). Elective genomic testing (EGT) provides adoptees with clinical genetic testing options to learn about genetic health risks in the absence of FHH. We assessed adoptees' interests in, motivations for and perceived utility of EGT.
Adult adoptees and non-adoptees completed an anonymous, online survey regarding their interest and motivations for EGT, perceived utility of potential results and willingness to pay for EGT. A validated measure of social identity was included to measure the effects of social identity on testing interest.
There were 112 adoptees and 229 non-adoptees included in the study. Adoptees reported greater interest in EGT (OR 5.0, 95% CI 2.2 to 11.3) than non-adoptees. They were motivated by curiosity and a desire to learn information about risks to children and grandchildren more than non-adoptees. Adoptees with higher education and non-adoptees with higher incomes were significantly more likely to spend more on EGT. Adoptees with higher incomes and non-adoptees with higher education were not significantly more likely to spend more. Social identity was a significant mediator between adoption and testing motivation.
Understanding adoptees' unique motivations and interests in EGT will allow healthcare providers to better address the informational needs and desires of this population. Social identity provides a foundation for recognising adoptees' universal experiences that influence motivations for genetic testing.
被收养者是一类可以从基因检测中受益的人群，有助于填补家族健康史（FHH）的空白。选择性基因组检测（EGT）为被收养者提供了临床基因检测的选择，使他们能够在没有 FHH 的情况下了解遗传健康风险。我们评估了被收养者对 EGT 的兴趣、动机和感知效用。
成年被收养者和非收养者完成了一项关于他们对 EGT 的兴趣和动机、对潜在结果的感知效用以及对 EGT 的支付意愿的匿名在线调查。包括一项经过验证的社会认同衡量标准，以衡量社会认同对测试兴趣的影响。
研究共纳入 112 名被收养者和 229 名非收养者。与非收养者相比，被收养者报告对 EGT 的兴趣更大（OR 5.0，95%CI 2.2 至 11.3）。他们的动机是出于好奇和渴望了解有关子女和孙辈风险的信息，这比非收养者更强烈。受教育程度较高的被收养者和收入较高的非收养者更有可能为 EGT 支付更多费用。收入较高的被收养者和受教育程度较高的非收养者不太可能为 EGT 支付更多费用。社会认同是收养与测试动机之间的重要中介因素。
了解被收养者对 EGT 的独特动机和兴趣，将使医疗保健提供者能够更好地满足这一人群的信息需求和愿望。社会认同为认识到影响遗传测试动机的被收养者普遍经历提供了基础。
