Regulating DIY genetic tests

In last week's BioNews, we reported on a story that the Human Genetics Commission (HGC) was about to allow 'lifestyle' genetic tests to be offered direct to the public without regulatory oversight. According to an article in the Times, two pressure groups were concerned that such tests are 'potentially harmful and need to be tightly regulated'. The Human Genetics Commission, which has been consulting the public on this issue, was due to report its findings at its plenary meeting in London last Wednesday.

This story has been popping in and out of the news for some time now (see the BioNews archive for details). So it came as no surprise that journalists might have reported on a much anticipated policy decision before it was made public. The curious thing, however, is that when an announcement was actually made by the HGC, only BBC News online reported on it. Perhaps it was because the announcement made by the HGC was only an interim one, with the final set of recommendations being made public in the next few months. But it is nonetheless notable that stories like these are more likely to be published when they are based upon an anticipated policy decision, rather than when they are based upon an actual policy decision.

So what is the policy decision in question? It seems that the HGC will continue to allow non-disease related genetic tests (the so-called lifestyle tests for things such as metabolism) to be industry regulated. Meanwhile, the HGC is likely to make sure that disease-related genetic tests will be carried out only by a medical practitioner and after appropriate genetic counselling.

A number of commentators have suggested that the public is worried about the free availability of lifestyle genetic tests. But, so far, there doesn't seem to be very much concern. Perhaps what we really need, as the HGC has suggested, is a public education programme to enable us to understand exactly what different genetic tests can and cannot tell us. That way, we will be able to make our own judgements about the validity of particular tests.