Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.
Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.
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DOI：
10.1016/j.ejmg.2021.104180
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发表时间：
2021-06
影响因子：
1.9
通讯作者：
Singh I
中科院分区：
文献类型：
--
作者：
Pavarini G;Hamdi L;Lorimer J;Singh I
自从美国食品和药物管理局批准销售晚发性阿尔茨海默病（LOAD）风险的基因检测以来，关于这些检测是否真的应该在线提供和直接面向消费者（DTC）的激烈辩论已经出现。随着这场辩论的进展，重要的是要了解年轻人的道德观点和动机，他们是DTC服务的关键目标群体。31名年龄在16-26岁的LOAD患者的孙辈接受了关于他们对LOAD DTC基因检测的道德态度和动机的采访。尽管大多数与会者声称，人们应该有权获得这些服务，但他们也表示担心，特别是对未成年人来说，了解风险可能会带来痛苦。大约三分之一的人对测试感兴趣，主要是为了获得关于自己健康的自我认识;然而，面对面的服务远远优于在线选择。虽然DTC基因公司通常将其服务作为“有趣的消费品”进行营销，但DTC LOAD检测在很大程度上被理解为一种严肃的健康筛查程序，也是阿尔茨海默氏症家庭中年轻人生活中的一个脆弱时刻。这说明了在测试前后向青年人提供适当的信息和支助标准的重要性。
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.
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DOI：
10.1097/gim.0b013e31821d69b8
发表时间：
2011-06
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Goldman JS;Hahn SE;Catania JW;LaRusse-Eckert S;Butson MB;Rumbaugh M;Strecker MN;Roberts JS;Burke W;Mayeux R;Bird T;American College of Medical Genetics and the National Society of Genetic Counselors
通讯作者：
American College of Medical Genetics and the National Society of Genetic Counselors
影响因子：
8.8
作者：
Ekstract, Michael;Holtzman, Golde I.;Zallen, Doris T.
通讯作者：
Zallen, Doris T.
影响因子：
8.9
作者：
Allyse, Megan A.;Robinson, David H.;Sharp, Richard R.
通讯作者：
Sharp, Richard R.
影响因子：
3
作者：
Celdran, Montserrat;Triado, Carme;Villar, Feliciano
通讯作者：
Villar, Feliciano
影响因子：
2.1
作者：
Borry, Pascal;Shabani, Mahsa;Howard, Heidi Carmen
通讯作者：
Howard, Heidi Carmen