Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors
Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors
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DOI：
10.1007/s10689-009-9253-9
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发表时间：
2010-03-01
期刊：
影响因子：
2.2
通讯作者：
Avard, Denise
中科院分区：
文献类型：
--
作者：
Borry, Pascal;Howard, Heidi C.;Avard, Denise
越来越多的公司直接向消费者做广告和销售基因检测。考虑到未成年人基因检测的伦理、法律的和心理问题，对公司的网站进行了研究，以描述和分析他们在这一问题上的政策。在被分析的29家公司中，有13家公司没有提供有关这一问题的任何信息，8家公司允许应父母要求进行基因检测，4家公司表示，他们的网站不针对18岁以下的儿童，4家公司建议，为了进行检测，申请人必须达到法律的成年年龄。如果私营公司提供的基因检测也在临床环境中提供，能否期望它们遵守有关这些检测的现行临床指南？如果是这样，就存在一定的模糊性。许多公司都在他们的声明中强调，他们的服务不是医疗服务，不应作为做出医疗决策的依据。然而，在这种情况下，对未成年人进行基因检测是否合适仍有争议。人类遗传学委员会与基因检测咨询委员会一样，处理了未经同意的检测问题，并建议不直接向16岁以下的人或无法就检测问题作出适当决定的人提供基因检测服务。
More and more companies are advertising and selling genetic tests directly to consumers. Considering the ethical, legal, and psychological concerns surrounding genetic testing in minors, a study of companies' websites was performed in order to describe and analyze their policies with respect to this issue. Of the 29 companies analyzed, 13 did not provide any information about this matter, eight companies allowed genetic testing upon parental request, four companies stated that their website is not directed to children under 18 years, and four companies suggested that in order to be tested, applicants should have reached the age of legal majority. If private companies offer genetic tests which are also offered in a clinical setting, can they be expected to adhere to the existing clinical guidelines with regard to these tests? If so, a certain ambiguity exists. Many companies are emphasizing in their disclaimers that their services are not medical services and should not be used as a basis for making medical decisions. Nonetheless, it remains debatable whether genetic testing in minors would be appropriate in this context. In line with the Advisory Committee on Genetic Testing, the Human Genetics Commission addressed the problem of non-consensual testing and recommended not to supply genetic testing services directly to those under the age of 16 or to those not able to make a competent decision regarding testing.