Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?

被引：0
作者：
Heidi Carmen Howard
Denise Avard
Pascal Borry
机构：
[1] Centre for Biomedical Ethics and Law,Department of Human Genetics
[2] Katholieke Universiteit Leuven,Departments of Clinical Genetics and Medical Humanities
[3] Centre of Genomics and Policy,undefined
[4] Faculty of Medicine,undefined
[5] McGill University,undefined
[6] EMGO Institute for Health and Care Research,undefined
[7] VU University Medical Centre,undefined
来源：
European Journal of Human Genetics | 2011年 / 19卷
关键词：
genetic testing; children; direct-to-consumer; professional guidelines;
D O I：
暂无
中图分类号：
学科分类号：
摘要：
The genetic testing of minors within the direct-to-consumer (DTC) genetic testing (GT) context has been given relatively little attention. The issue of testing healthy children for diseases that would only develop in adulthood raises many important ethical, legal and social issues. As genetic testing is now available outside of the traditional health care system, often without even the intermediate of a health care professional, we surveyed 37 DTC GT companies regarding their policies for testing in children. Although the response rate is relatively low (35%, 13/37), our findings reveal that a clear majority of companies do perform genetic testing in minors. As such, companies testing for adult onset diseases are acting in contradiction of established professional guidelines, which state, among others, that, for predictive genetic testing, the availability of therapeutic or preventive measures is necessary for testing to be performed in asymptomatic minors. The community of stakeholders in children's health care and genetic testing should, therefore, decide which standards need to be upheld by DTC GT companies and ensure that these are met.
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页码：1122 / 1126
页数：4
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