Genetic testing: should consumers have the right to decide?
18.06.2013 - Europe’s consumers have an often turbulent relatioship with science. Advice from scientists that clashes with lifestyle preferences finds governments reluctant to appear as over--zealous legislators, especially if it makes them unpopular with either groups of voters or the large companies that are often associated with the particular bit of lifestyle under threat.
Things like high fat foods, alcohol and tobacco all have their proponents – some very vocal.
Ironically, in a situation where scientists have generally said “it’s OK” – in the case of food from GM crops – people didn’t believe them. Of course, hysterical media reports and poor company management of the situation didn’t help. Now we have an interesting scenario where it could be the other way round: the question of accessibility in direct-to-consumer (DTC) genetic testing without face-to-face counselling.
Caution from clinicians
A survey conducted by INSERM and the KU Leuven has revealed that the vast majority of clinicians would prefer such testing to be linked to face-to-face genetic counselling (see p. 12). Where the associated condition was untreatable or unpreventable, almost 100% of clinicians wanted this direct patient contact. Indeed, the German Ethics Council recently recommended to its government to lobby for international rules on DTC testing.
Of course, DTC is a growing business in Europe – a shift towards US healthcare models where patients receive direct marketing on all aspects of healthcare (OMG, have you seen the adverts?). The quandary for European governments is around their favourite catch-phrase, “consumer choice”. Should consumers be free to take genetic tests without clinical advice, and possibly make poor lifestyle or treatment decisions based on a meaningless result? We all know people who have had food intolerance testing, and subsequently decided to stop eating nine out of ten food groups because a nice man off the Internet said they would probably blow up and die if they continued to eat bread.
However, legislating on precautionary advice from clinicians risks annoying consumers who might like to take a test to see if they are special, as well as of course those nice (hopefully) tax-paying companies that provide such tests. I suspect that national governments will fail under pressure from them, so this is something that Brussels can step up to do. Because it is the right thing to do.
Being the bad guy
One thing Brussels is very good at doing is taking the blame for implementing legislation at the European level on nationally unpopular issues like pollution, water quality or human rights. So it might as well do the right thing on genetic counselling, and add it to the list for beleaguered national politicians to rant about.