How to regulate direct-to-consumer genetic tests?

Is knowledge about ones genome power or is it toxic information we need to be protected from?

The recent rise in companies providing direct to consumer (DTC) genetic tests has prompted a closer look at the potential societal impact of these services. Responses in different countries vary from restrictive to liberal.

Are specific laws regulating DTC genetic test needed? Should all DTC tests be treated equally before the law of should there be a distinction between tests that screen for a particular variant or mutation with a proven association to disease and tests that do genome wide screens? Should a distinction be made between tests with proven clinical utility that could lead to medical intervention vs tests that provide non-actionable information.

In the editorial in the November issue of Nature Methods we look at this topic and put forth the idea that the onus is also on the consumer to educate themselves about the kind of information these tests offer.

Ideally consumers who receive test information will have access to professionals to discuss these data. However, a shortage of genetic counselors and physicians trained in genomic medicine may make this difficult at present. Should medical schools rethink their curricula?

Is privacy of genetic information sufficiently safeguarded?

Not all DTC genetic tests are done for medical reasons, should ancestry testing be exempt from any regulation?

We are interested to hear the views of our readers on this topic.