Over the past few weeks, I have been offered massages, gym visits, vitamin supplements, make-up tips and consultations with cosmetic surgeons. All these generous invitations came from PR companies keen to create a media glow for their clients’ products. Since an awful lot of column inches seem to be devoted to genome testing at the moment, I began to wonder if this was the latest thing being dangled under journalists’ noses.
There are numerous reports in the British media of how marvellous and easy it is to undergo genetic screening. You simply give a sample of your DNA (a swipe of your cheek on a swab will do) and hand over your cash (anything from hundreds to thousands of pounds, depending on the company). Voilà, by return of post, you are told your “genetic risk profile”.
Two themes emerge from the articles written by these journalists staring, rapt in wonder, at their own genetic code. First, they see this as a part of the information revolution: at last we are in charge of our destiny; no longer are paternalistic doctors preventing us from discovering what we have the right to know. Second, doctors better get themselves trained up on how to use this information; if they don’t, the service the consumer pays for won’t represent value for money. It’s doctors’ responsibility to help us use this information appropriately.
This is plainly silly. While genetic tests can be diagnostic, doctors also know that genes are rarely the sole cause of illness. Many such tests reveal risks but cannot definitively predict – environmental factors also play a part.
Journalists parading in and out of genetics clinics will not see the anguish as the children of a Huntington’s disease sufferer try to decide whether to take the test themselves, for example. I doubt, too, whether any journalists have asked what the evidence is for genome testing – does this intervention reduce morbidity? We don’t know. Could it, by increasing anxiety and stress, make it worse? We don’t know that either. Could it mean that people who learn they are at low risk of getting heart disease smoke more, not less?
Companies marketing these tests do not seem to be studying what effects the results have. Even where a gene with a known high risk of breast cancer is discovered – usually in a woman who has requested testing due to family history – there is debate about what to do if she tests positive. Should she have a prophylactic mastectomy or take medication? More mammograms, or avoid radiation? The jury is out, but here at least research is being done – unlike the sphere of genome screening currently on offer.
Risk is hard to understand and hard to manage, mainly because emotions get in the way. With genomes, knowledge of it may cause more problems than it solves.