It is sensible and pragmatic, by a body that has been analysing DTC genetics for longer than any other, having started way back in 2002 with a Committee headed by Sir John Sulston. Over the years the wide and varied committee membership has changed but surprisingly they have continued to come up with consensus statements which, in my opinion, almost always hit just the right notes (e.g. Preconception diagnosis http://www.hgc.gov.uk/Client/news_item.asp?NewsId=156)

There is little talk of banning anything but the principles would give protection where it is needed without stifling progress and there is no hint of either paternalism or attempts at professional control

well, i think the key here is a bias toward regulatory precaution due to concerns with liability, as well as regulatory capture by interested parties. real socialist societies where the state commands substantial means of production aren’t actually too obsessed with stuff like consumer protection, because they’re geared toward production. e.g., the eastern bloc and china has really bad environmental outcomes.

in other words, the real issue is an excessive faith in the technocracy in planning and guiding progress to minimize all downside liabilities while maximizing the upside gains from innovation.

I try to avoid the “S” word (socialism) so as to not polarize the issues more yet, but sometimes it’s necessary to call a spade a spade.

At the risk of showing my cynicism: one point to keep in mind is that those of a socialist mindset will gravitate towards socialistic measures to solve problems (even those caused by socialism). As a generalization, I’d be amazed if the Europeans ended up endorsing a freedom-based approach, even though market forces tend to be vastly more effective and efficient than government regulations at fostering realistic and appropriately diverse and context-specific levels of quality. I’m taking it as a given that the pro-socialism crowd is ignoring the key moral issue, i.e., that these aspects are for the private parties to negotiate, not legislators. Even then, the market-based solutions are better.

Biotech isn’t all I do, and I observe massive problems with government regulations even in relatively crude industries, where the government regulations are ham-handed and destructive (i.e., not just government regulation, but immensely clueless and shortsighted government regulation). If we’re going to have regulation (and we shouldn’t, but IF) then it should at least be well-pondered enough, and make enough sense, to not fall apart at the first exposure to common sense as applied by an industry insider. If the legislators can’t get it right even with such crude industries, it’s probably time to be very worried about the cluelessness about to be unleashed onto the DTC industry. It’s sort of like seeing someone unable to do a good job of slicing an apple, and next he’s about to perform brain surgery on a patient. It doesn’t bode well.

The “ban them all” approach has approximately the same level of fairness as “kill ‘em all, let God sort it out.”

Then again, there’s a lot to be said for consistency. If things are to be banned because they are imprecise and because their mistakes could cost lives, then certainly every socialist legislative body, and resultant government agency, should be banned for those reasons.

Andre Gous
CEO
Precision Quality DNA

oh thanks, i had no idea you had such a perfect command of my thought processes

This is a misunderstanding. All the talk about robotics in surgery is misunderstanding. Robots perform exactly the same function as 19th-early 20th century machines did in trades. Robots cut flesh more precisely than humans do. Big deal – machines drill wood more precisely than humans, too. But it is still a surgeon who decides where to cut and how deeply. No robot supplants this function. There is no such thing as a “standard” surgery that is identical between different patients.

Unless you believe that AI is coming within your lifetime. In which case I have a nice bridge in Brooklyn to sell to you.

However, banning them is not a solution. If MDs are not able to interpret them, then they should study more genetics and statistics. Or otherwise they should allow other professionals to deal with this subject!

Instead, they choose to remove these tests completely, not considering the fact that people *are* interested in knowing their own genome! These tests need to be improved, not banned. Also, they must be somehow regulated in order to avoid that rubbish tests reach the market.

Unfortunately, it looks like nobody cares about improving the risk prediction models, about improving the communication of results, about integrating them with environmental factors. It’s too easy to simply say “Ban them!” without carefully studying all the aspects of the problem.

a) DeCode 2007 tell me i have a 2-fold increased risk
b) DeCode 2010 say it is 1.35x increased
c) 23andMe 2010 tell me it is 1.23x increased
d) The Corriell trial (one diabetes gene!) would tell me I am at lower risk
e) Dodgy Italian test tells me my risk is “much higher than average”

None are right and none are wrong (except the last one) – all are population statistics and none apply to me as an individual. My actual risk is close to zero: I have normal BMI, exercise enough and eat hardly any refined carbs. There are many areas where the DTC companies could improve their marketing and their interpretations (they should stop saying “your risk” for example, it’s not MY risk – it’s a population based number).

As for the survey – big news, professionals want to protect their patch. Plumbers, electricians, carpenters, car mechanics etc would probably welcome a ban on DIY. So we should ban access to all information that informs us about disease and gives us tools to calculate risk – including WebMD and the rest. In Italy you can only buy aspirin from a qualified pharmacist, the result is that a headache costs me 4 euros for a pack of 12 pills – guess what? they voted against OTC medicines being sold in supermarkets.