European Journal of Human Genetics - Are the kids really all right[quest] Direct-to-consumer genetic testing in children: are company policies clashing with professional norms[quest]

Article
European Journal of Human Genetics (2011) 19, 1122–1126; doi:10.1038/ejhg.2011.94; published online 1 June 2011
Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?
Heidi Carmen Howard1, Denise Avard2 and Pascal Borry1,3

1Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium
2Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montreal, QC, Canada
3Departments of Clinical Genetics and Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Centre, Amsterdam, The Netherlands
Correspondence: Dr HC Howard, K.U.Leuven Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, UZ ST RAFAEL Kapucijnenvoer 35, BOX 7001, 3000 Leuven, Belgium. Tel +32 16 33 29 16; Fax: +32 16 33 69 52; E-mail: heidi.howard@med.kuleuven.be

Received 2 February 2011; Revised 7 April 2011; Accepted 27 April 2011; Published online 1 June 2011.

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.

Keywords: genetic testing; children; direct-to-consumer; professional guidelines
Abbreviations: DTC, direct-to-consumer; GT, genetic testing; GWT, genome wide testing

full-text:
European Journal of Human Genetics - Are the kids really all right[quest] Direct-to-consumer genetic testing in children: are company policies clashing with professional norms[quest]