title: Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.
abstract: 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.
authors.affiliation: Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium. Pascal.Borry@med.kuleuven.be
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
authors.forename: Heidi C
authors.initials: HC
authors.lastname: Howard
authors.forename: Karine
authors.initials: K
authors.lastname: Sénécal
authors.forename: Denise
authors.initials: D
authors.lastname: Avard
mesh_terms: D002648:Child; D003219:Confidentiality / Q000331:legislation & jurisprudence*; D004992:Ethics, Medical; D005817:Genetic Counseling / Q000331:legislation & jurisprudence*; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D030661:Genetic Privacy / Q000331:legislation & jurisprudence; D033142:Genetic Services / Q000592:standards; D005820:Genetic Testing / Q000379:methods*; D005826:Genetics, Medical / Q000193:education; D033161:Government Regulation; D017408:Guidelines as Topic; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008389:Marketing of Health Services / Q000941:ethics; D033242:Minors; D010819:Physician's Role; D017410:Practice Guidelines as Topic; D014342:Truth Disclosure / Q000941:ethics