Skip to main content

Advertisement

Log in

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

  • Published:
Familial Cancer Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Borry P, Stultiens L, Nys H, Cassiman JJ, Dierickx K (2006) Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 70(5):374–381. doi:10.1111/j.1399-0004.2006.00692.x

    Article  CAS  PubMed  Google Scholar 

  2. Suter SM (1993) Whose genes are these anyway?: familial conflicts over access to genetic information. Mich Law Rev 91(7):1854–1908. doi:10.2307/1289655

    Article  CAS  PubMed  Google Scholar 

  3. British Medical Association (2001) Consent, rights and choices in health care for children and young people. BMJ Books, London

    Google Scholar 

  4. Fanos JH (1997) Developmental tasks of childhood and adolescence: implications for genetic testing. Am J Med Genet 71(1):22–28. doi:10.1002/(SICI)1096-8628(19970711)71:1<22::AID-AJMG4>3.0.CO;2-S

    Article  CAS  PubMed  Google Scholar 

  5. Group ETC (2008) Direct-to-consumer DNA Testing and the myth of Personalized Medicine: Spit Kits, SNP Chips and Human Genomics. 2008. www.etcgroup.org

  6. Mykitiuk R (2004) Caveat emptor: direct-to-consumer supply and advertising of genetic testing. Clin Invest Med 27(1):23–32

    PubMed  Google Scholar 

  7. Cook L (2007) Should we all be testing our DNA? BBC 5 Live Report

  8. Janssens AC, Gwinn M, Bradley LA, Oostra BA, van Duijn CM, Khoury MJ (2008) A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions. Am J Hum Genet 82(3):593–599. doi:10.1016/j.ajhg.2007.12.020

    Article  CAS  PubMed  Google Scholar 

  9. Wade CH, Wilfond BS (2006) Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests. Am J Med Genet C Semin Med Genet 142(4):284–292. doi:10.1002/ajmg.c.30110

    Google Scholar 

  10. Schmidt C (2008) Regulators weigh risks of consumer genetic tests. Nat Biotechnol 26(2):145–146. doi:10.1038/nbt0208-145

    Article  CAS  PubMed  Google Scholar 

  11. Katsanis SH, Javitt G, Hudson K (2008) Public health. A case study of personalized medicine. Science 320(5872):53–54. doi:10.1126/science.1156604

    Article  CAS  PubMed  Google Scholar 

  12. Borry P, Howard HC, Sénécal K, Avard D (2009) Direct-to-consumer genome scanning services. Also for children? Nat Rev Genet 10(1):8

    Article  CAS  PubMed  Google Scholar 

  13. Genetics and Public Policy Center (2008) Center receives NIH award to study direct-to-consumer genetic testing. http://www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=107

  14. German Society of Human Genetics (1995) Statement on genetic diagnosis in children and adolescents. http://www.gfhev.de/en/gfh/

  15. Danish Council of Ethics (2001) Genetic investigation of healthy subjects—report on presymptomatic gene diagnosis. http://www.etiskraad.dk/sw293.asp

  16. European Society of Human Genetics (2001) Provision of genetic services in Europe—current practices and issues. www.eshg.org

  17. Bioethics Committee Canadian Paediatric Society (2003) Guidelines for genetic testing of healthy children. Paediatr Child Health 8(1):42–45

    Google Scholar 

  18. European Society of Human Genetics (2009) Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. Eur J Hum Genet 17(6):720–721

    Article  Google Scholar 

  19. Direct DNA our standards. http://www.dnadirect.com/web/about_dna_direct/dna-direct-standards Accessed 10/01/2009

  20. The American Society of Human Genetics Board of Directors, The American College of Medical Genetics Board of Directors (1995) Points to consider: ethical, legal, and psychological implications of genetic testing in children and adolescents. Am J Hum Genet 57:1233–1241

    Google Scholar 

  21. National Society of Genetic Counselors (1995) Position satement on prenatal and childhood testing for adult-onset disorders. http://www.nsgc.org/about/position.cfm#Prenatal_two

  22. Consumer Genetics Authorization and Disclosure form. http://www.consumergenetics.com/pdfs/Asthma-Brochure.pdf. Accessed 10 January 2009

  23. iGenix (2009) Privacy policy. http://www.qtrait.com/privacy_policy. Accessed 10 January

  24. 23andme (2009) Terms of Service. https://www.23andme.com/about/tos/. Accessed 10 January

  25. Gollust SE, Hull SC, Wilfond BS (2002) Limitations of direct-to-consumer advertising for clinical genetic testing. JAMA 288(14):1762–1767. doi:10.1001/jama.288.14.1762

    Article  PubMed  Google Scholar 

  26. Lupton D (2001) Risk as moral danger: the social and political functions of risk discourse in public health. In: Conrad P (ed) The sociology of health and illness. Worth Publishers, New York, pp 394–403

    Google Scholar 

  27. Grob R (2008) Is my sick child healthy? Is my healthy child sick?: changing parental experiences of cystic fibrosis in the age of expanded newborn screening. Soc Sci Med 67(7):1056–1064. doi:10.1016/j.socscimed.2008.06.003

    Article  PubMed  Google Scholar 

  28. SeqWright Privacy Policy (2008) http://www.seqwright.com/gps/privacy.php. Accessed 20 October

  29. Decode (2009) The deCODEme concept. http://www.decodeme.com/index/about_concept. Accessed 10 January

  30. Navigenics (2009) Privacy Policy. 2009. http://www.navigenics.com/policies/Privacy/. Accessed 10 January

  31. Human Genetics Commission Genes Direct (2003) Ensuring the effective oversight of genetic tests supplied directly to the public. http://www.hgc.gov.uk

  32. People, Science and Policy Ltd (2002) The supply of genetic tests direct to the public: supporting the public consultation. 9-5-0008

  33. Advisory Committee on Genetic Testing (1997) Code of practice and guidance on human genetic testing services supplied direct to the public. London, Health Departments of the United Kingdom

Download references

Acknowledgments

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

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Pascal Borry.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Borry, P., Howard, H.C., Sénécal, K. et al. Health-related direct-to-consumer genetic testing: a review of companies’ policies with regard to genetic testing in minors. Familial Cancer 9, 51–59 (2010). https://doi.org/10.1007/s10689-009-9253-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-009-9253-9

Keywords

Navigation