Department of Psychiatry, University of Oxford, UK; Wellcome Centre for Ethics and Humanities, University of Oxford, UK.
Department of Psychiatry, University of Oxford, UK.
Eur J Med Genet. 2021 Jun;64(6):104180. doi: 10.1016/j.ejmg.2021.104180. Epub 2021 Mar 26.
Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services.
Thirty-one grandchildren of people with LOAD, aged 16-26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD.
Even though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option.
While DTC genetic companies often market their services as a "fun consumer product", DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.
自美国食品和药物管理局批准销售用于检测迟发性阿尔茨海默病（LOAD）风险的基因检测以来，关于这些检测是否应在线和直接面向消费者（DTC）提供的激烈争论就一直存在。随着这场争论的推进，了解年轻人（DTC 服务的一个关键目标群体）的伦理观点和动机就显得尤为重要。
对 31 名 LOAD 患者的孙辈（年龄在 16-26 岁之间）进行了访谈，询问他们对 DTC LOAD 基因检测的道德态度和动机。
尽管大多数参与者声称人们应该有权获得这些服务，但他们也对得知风险后可能会感到痛苦表示担忧，尤其是对未成年人而言。约三分之一的人对测试感兴趣，主要是为了了解自己的健康状况；然而，他们更倾向于面对面的服务，而不是在线服务。
尽管 DTC 基因公司通常将其服务营销为“有趣的消费产品”，但 DTC 对 LOAD 的检测在很大程度上被理解为一种严肃的健康筛查程序，也是阿尔茨海默病患者家庭中年轻人生活中的一个脆弱时刻。这就凸显了在测试前后向年轻人提供适当的信息和支持标准的重要性。
