My advice to epidemiologists and their employers is to ignore the law. I wouild welcome being prosecuted under it because it would then be exposed as unworkable. As someone who always drives at 70 mph on motorways I can tell you that bad laws are always ignored and the law enforcement agencies turn a blind eye.

In principle there is nothing wrong with insurance companies knowing about large genetic risks – they already do all they can to find out about other kinds of risks and duly penalise you for them (as any gay man or cancer patient could tell you). The problem is the population wide effect – the only solution is state legislated risk sharing (such as happens in Ireland). Even that has downsides in somewhere like the UK where insurance cover is rare – because then the patient has an asymmetrical knowledge advantage over the insurance company.

Is it gattaca where it is illegal to do tests on people but the technology is so developed that they just do it without your knowledge? A bit like the compulsion now to get a health form filled in by your doctor and sent to a potential employer, they can’t legally discriminate against you if you have a disability (althoug funnily enough, if it isn’t serious enough to be considered a disability, e.g. mild depression in the past, they can), but who’s to know?

news.bbc.co.uk/2/hi/health/6724369.stm

titled “Serious diseases genes revealed”
Imagine trying to get health insurance if you were known to have one of the suspect genes.

I think it is odd that in a nation so pro-fluffy animals and anti-animal research there is so little commitment to research or even life-saving donation involving post-mortem tissue. We’re a funny, selfish lot.

Do you know what the position is on the release of patient data to biotech companies?