Familial Cancer

, Volume 9, Issue 1, pp 51–59 | Cite as

Health-related direct-to-consumer genetic testing: a review of companies’ policies with regard to genetic testing in minors

  • Pascal Borry
  • Heidi C. Howard
  • Karine Sénécal
  • Denise Avard
Article

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.

Keywords

Direct-to-consumer Genetic testing Children Ethics Advertising 

Notes

Acknowledgments

PB is funded by the Research Fund Flanders and HCH is funded by an International Incoming Marie Curie Fellowship (European Commission).

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Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Pascal Borry
    • 1
  • Heidi C. Howard
    • 1
  • Karine Sénécal
    • 2
  • Denise Avard
    • 3
  1. 1.Centre for Biomedical Ethics and LawKatholieke Universiteit LeuvenLeuvenBelgium
  2. 2.Centre de recherche en droit publicUniversité de MontréalMontrealCanada
  3. 3.Centre for Genomics and PolicyMcGill UniversityMontrealCanada

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