Why bother getting your fortune told when you can get far more precise information about you, your ancestry and your future with a simple genetic test? That is the claim anyways from companies offering personal DNA tests directly to consumers. In fact, these companies have spawned a new social network, the Spit Party! Last fall, a Spit Party held as part of Fashion Week in New York City made The New York Times. Not the typical activity for the fashionistas out to party, but one that on the face of it seems like fun. However, the scope of the information learned from these comprehensive DNA tests may not be what was expected as risks for many health conditions may be discovered. Currently, companies offering these tests will provide information on an ever expanding list of health conditions where the clinical validity of the finding may be uncertain.
Direct to consumer marketing and testing, which has taken off in the United States raises an interesting question. Who is the gatekeeper of access to a genetic test? Should these tests only be offered through a healthcare professional? There is ample evidence to suggest that the healthcare community as a whole remains ill-prepared to integrate genetics and genomics into their practice. So, what should a savvy consumer do? Many have increasingly opted to learn more about themselves through these increasingly affordable tests. But buyer beware, there is a real risk of learning more than expected which could have personal and psychological consequences when even the most genetically competent healthcare provider cannot provide adequate advise as the evidence for clinical utility of some of these tests may be sparse. An excellent review on this topic from both a European and US perspective can be found by: Hogarth et al. (2008). The Current Landscape for Direct-to-Consumer Genetic Testing: Legal, Ethical, and Policy Issues. Annual Review of Genomics and Human Genetics, 9, 161-182.
In the end, no one country has mastered navigating the personal DNA testing pathway and there remains a widely varying oversight system which places the burden of these tests squarely on the consumer and the healthcare provider.
Posted on behalf of Kathleen Calzone, International Visiting Senior Fellow