US watchdogs threaten vanity gene testers
Crack down on DNA crackers
The new market in personal genetics, Silicon Valley venture capitalists' latest great hope, is facing regulatory scrutiny from authorities concerned about a "wild west" approach to extremely sensitive information.
About a dozen young companies, including 23andme, the startup backed by Google (and founded by Sergey Brin's wife), purport to offer insight into their customers' risk of developing various conditions by testing for gene variants. A simple cheek scrape or saliva sample is all that's required to tell you great things about your genetic inheritance and medical future, or so the marketing goes.
However, companies offering diagnostic services are tightly controlled in many states, and New York's Department of Health has written to several personal genetics firms threatening legal action. The department insists they must have a permit to test New York residents.
23andme is trying to avoid regulation by claiming its tests are not about disease. A spokesman told Forbes: "23andMe's services are not medical... they are educational."
"Frankly, it blows my mind that someone would be saying that looking at whether you are going to get multiple sclerosis is recreational," replied a New York official. He said 23andme will be referred to prosecutors if it continues to violate the law.
California is also investigating 12 complaints against unnamed personal genetics outfits. State law there says all genetic tests must be ordered by a licensed doctor.
23andme's website does not make any medical claims, but the report received by consumers who cough the $1,000 fee includes data on genes associated with heart disease, various cancers, and bowel disorders.
One worry is that the screening offered by personal genetics companies are by no means comprehensive. As well as filling doctors' offices with even more of the "worried well", the pick-n-mix approach adopted by personal genetics firms could mean those with a family history of cancer are misled into believing they have escaped inheriting a deadly gene.
It seems regulators are slowly waking up to the new questions posed by the collision of the web, data harvesting, and cheap biotechnology.
Last week, two prominent doctors called for laws to tackle Google and Microsoft's ongoing landgrab in the US patient records market. ®
COMMENTS
It's what everyone needs...
a genetic test that can expose whether you MIGHT be susceptible to any variety of diseases AND having that information controlled by a huge corporation.
Because we all know that any information there could never be compromised, sold, or given to a government body.
Wel...
I don't know much about how these health insurance things work, but I see a loophole here...
I think they (insurance companies) ask you about preexisting health conditions, isn't it what happens? If that is the case, then simply having a gene, even if it gives you 100% certainty of getting sick (e.g. Huntington's), does not give you the condition per se, but only the potential. So, are they going to start asking for potential health conditions?
Do they already do that? It seems to me like they do, because that's all "life style" and "family history" (do they ask that?) are about. Anyway, the consumer (there is no such a thing as a citizen) is always screwed in the end...
@ Brian, H and Odin
The suggestion I made is actually a revamp of what Lloyds offers their customers. (I know: I recently checked at Lloyds for a car insurance policy for my vintage 1956 MGA.)
You offer, essentially, a risk pool that is very narrow and has well calculated actuarial statistics about when the policy is likely to be used. The pricing is like that Lloyds offers: the closer to the probable time the policy will be used invokes a higher price. If you find out about a pre-disposition to, let's say, testicular cancer when you are in your early 20's, and the disease is most likely to occur in your 50's, if you take a long-term policy the payments collected over the time of the policy are smaller, with the value of the policy being maximized 30 years in the future. If you take a short-term policy at age 20, say for 5 years, the payments would be minimal, as the risk associated with an incident of cancer is much lower.
Actually any individual can do this for themselves: you can identify the risks associated with your genetics, life-style, etc. and create a hedge fund for yourself that will accumulate value over time to meet the expected costs of these possible problems. This has to be done early in life and be kept up to date rigorously, but such planning can significantly reduce your personal exposure to anticipated risks in the future.
Used to be that's what mutual insurance groups were all about: individuals pooling their resources in order to insure capital to meets anticipated risks in the future. The only REAL problem with insurance companies today is that they have diversified into OTHER businesses that detract from their ability to offer risk management products effectively.
I'm hoping that "vanity DNA testing" becomes a tool to stop the insurance behemoths from this practice and instead forces them back to their original purpose - as a risk manager for YOU!
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