US watchdogs threaten vanity gene testers

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 …

[Brett Brennan]

I smell an insurance company...

This sounds like the big insurance companies are pressuring governments to insure that they have access to the results of "unauthorized" genetic testing. Or, rather, the insurance companies want to make sure that YOU don't learn anything about your potential health problems before THEY do.

Insurance companies would LOVE to get hold of your genetic material and subject it to the same tests that these various "unlicensed" companies do in order to deny or restrict coverage of potential future problems. This makes sense, as placing a blanket restriction on all policies isn't the best PR for business. ("You are not covered for: cancer, diabetes, heart disease, mental illness, pregnancy complications...etc.")

As long as these companies don't release your data to anyone but you, are audited by some reasonable authority (not necessarily government) as to the accuracy of their testing, and provide the appropriate disclaimers for the accuracy of their results, I personally see no problem here. They are offering a service that lets you get one step ahead of the insurance companies, which levels the playing field for consumers.

The APPROPRIATE response would be to establish an oversight body for these testing companies - AND - tell the insurance companies to start providing "riders" to cover specific gene-identified illness at competitive rates. In other words you can still get cheap coverage for your usual day-to-day illnesses, and specific coverage for possible illnesses that you might develop in the future.

Here's another thought: if you subscribed early to a future disease policy, the initial costs would be low, with value building over time. Furthermore, as progress is made in treatment over the years, the cost to USE the policy would decrease. After all, this is what actuarial analysis is all about...

Finally, in order to get insurance companies to do their job - hedging against future risk - rather than just raking in profit, these testing companies could "pull a Google" and, if requested, send you HUNDREDS of possible insurers information so you could comparison shop the rider policies for your potential illness. Wow, what a concept: let the market sort out the price through competition!

My nickel's worth. Leaving now.

[Anonymous Coward]

But surely....

@Brett

...as soon as you know something you cannot omit it from an application and not be covered by the conditions which say that cover is void if you failed to disclose information in your possession.

In that case it's useful to know that you had a test if you then make a claim and the insurer discovers it predated your application.

The safest way is surely not to have any tests at all?

[H]

@ BB

Nice comment Brett.

For what it is worth, i took part in a screening recently for a piece due out on Sky News in the UK this month. Obviously i didnt have to cough the $1000 :)

The piece to camera involved a few questions about possible apprehensions about what i would find and privacy. I believe i raised a similar point- That it was fine for the individual to get hold of the info, as long as it is secured (the login is https) and is not available to insurance co.s or medical providers (state or private) etc.

If these laws are passed, i will then not be able to claim legal protection/sue the ass off 23andMe should any of my genetic predispositions become public knowledge. So i am going to say NO to the 'official watchdog' approach, as this would be on state-run lines and a step away from compulsory state access when required for future "law and order" inititives/fishing expeditions that neo-labour love so much :(

I wouldn't normally venture self-regulation as the best way to run things, but here i think the privacy/distance from state bodies argument is compelling, and should be tried.

Though the idea of saving on your insurance through a genetic 'googling' of your 'individuality' across hundreds of insurers' sites, I am equally afraid of no-one/company wanting to insure some people whatever their background. Stick to lifestyle questions for insurance - they still check the facts.

Norwich Union have been one company pushing hard for the National DNA database in the UK, looking along similar lines as you outline above i would hazard. This should be avoided IMHO.

[Fatman]

RE: I smell an insurance company

I smell that (stench of fecal matter) too; and I do not TRUST insurance companies. After all, they exist solely to make a profit; and just HOW do insurance companies make a profit - deny claims.

Additionally, how can a user of one of these companies services EVER can be certain that what their genetic make-up may reveal will not be:

1) stolen,

2) sold to advertisers,

3) subject to governmental "search and seizure" orders, or

4) used by private parties (like employers or insurance companies) to discriminate.

Any answers out there????

[Daniel B.]

Re: But surely...

"In that case it's useful to know that you had a test if you then make a claim and the insurer discovers it predated your application."

Unless its been 2 years since you made your application, or 2 years since you made the test *and* you already had insurance. Basically after 2 years, if the insurance company didn't find out about it, there's nothing they can do about it by law, even if you lied to them.

[Andy Bright]

err good i think

Finally it seems the regulatory people in the states have got something right. First time I've seen them put people before business in a decade.

If the FDA was in charge of this, no doubt these companies would be free to dispense their snake oil DNA tests. An FDA that oversaw the release of arthritis medicine that causes congenital heart failure and bags of salad that contain e-coli, should be trusted over the far more reliable Canadian regulatory body? I don't think so, especially considering their whole argument is that drugs made in China are safer when dispensed in the US as opposed to Canada.

But happily a real and unpaid for government agency is in charge of these things and until Opra and the courts get involved, business will come second best to bullshit diagnosis. Opra btw is the one that suggests we all pay $1000 for a meaningless catscan, so we can plague doctors and surgeons with problems that don't exist or will never pose as much danger as having surgery of any kind. Personally I loved her endorsement of the idea that we don't need to work for the things we want in life, like good health, money or tvs, instead we should just think positively and we'll get everything our greedy little minds can imagine.

/soapbox

[Pierre]

Forget the tests

Appart for a very few genetic diseases with a very high penetration, genetic tests are remarquabely irreliable for predictive purpose. Lifestyle is orders of magnitude more predictive, and all the reliable genetic information you'd get from a DNA analysis, you can get also by a look on your family's medical history. Forget the genetic tests, that's just useless hype (unless you come from a family with a know penetrant genetic disease. But then they would be prescibed by a physician).

[Mike Hocker]

The first step...

...is to define personal information as personal. The information does not belong to Google, an insurance company, or to a faceless greedy data aggregator, but to the person. If the person denies access, no one can gain access to whatever the genetic information is, nor can the greedsters maintain meta information. Meta information is, for instance, the fact that certain information (such as a gene map for a person) exists.

Not only that, but the person is not allowed to waive their rights to the information; otherwise, we end up with boilerplate EULA like agreements that basically give away everything for nothing, for all eternity.

[Helen Wallace]

Marketing scam

Selling 'genetic susceptibility' tests was always going to turn into a massive marketing scam. Here is a short explanation of why the tobacco, chemical, nuclear, pharmaceutical and food industries - not to mention governments - are all so keen on the idea (they have all poured money into research in this area):

http://www.genewatch.org/sub.shtml?als[cid]=532295

Basically healthy people make a much better market for 'health and wellness' products than sick ones, and its handy to blame your genes for your risk, rather than do anything about the social or environmental causes of ill health. In Britain, the Government would love access to DNA linked with NHS medical records as a back-door forensic database.

For more info on genes and marketing see:

http://www.genewatch.org/sub-396520

And here is more info on why tests of common genetic variants tell you nothing useful about your health:

http://www.genewatch.org/sub-396519

[Brett Brennan]

@ 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!

[J]

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...

[Anonymous Coward]

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.