Direct-to-consumer genetic testing — where should we focus the policy debate?

Caulfield, Timothy; Borry, Pascal

doi:10.5694/mja12.11024

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What are the implications for health systems, children and informed public debate?

Until recently, human genetic tests were usually performed in clinical genetics centres. In this context, tests are provided under specific protocols that often include medical supervision, counselling and quality assurance schemes that assess the value of the genetic testing services. Direct-to-consumer (DTC) genetic testing companies operate outside such schemes, as noted by Trent in this issue of the Journal.1 While the uptake of DTC genetic testing has been relatively modest, the number of DTC genetic testing services continues to grow.2 Although the market continues to evolve,3 it seems likely that the DTC genetic testing industry is here to stay.

1 Faculty of Law and School of Public Health, University of Alberta, Edmonton, Canada.
2 Department of Public Health and Primary Care, Katholieke Universiteit Leuven, Leuven, Belgium.

Correspondence: tcaulfld@law.ualberta.ca

Acknowledgements:

We thank Robyn Hyde-Lay and Zubin Master for research support and AllerGen (Networks of Centres of Excellence of Canada) and the Interdisciplinary Chronic Disease Collaboration for funding support.

Competing interests:

No relevant disclosures.

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Direct-to-consumer genetic testing — where should we focus the policy debate?

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