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Re:23andMe to share customer gene data with GlaxoSmithKline ... by delfinom on Tuesday December 17, 2019 @03:47PM (#21818640)
>Guess what, my maternal granddad had Parkinson's disease. I hope to god the do something with our data. I knew that $99 was not enough to pay for the processing, storage and hosting of my data. This is the long game for 23 and me. They are a genetic research company.

Sadly because of the state of America, your insurance company once it gets your genetic data is going to make you sorely regret it.

Re:23andMe to share customer gene data with GlaxoSmithKline ... by dekhn on Tuesday December 17, 2019 @04:12PM (#21818895)
it's illegal for health insurers to discriminate using genetic information: https://www.genome.gov/about-genomics/policy-issues/Genetic-... ("Specifically, health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions").
Re:23andMe to share customer gene data with GlaxoSmithKline ... by lostcolony on Tuesday December 17, 2019 @05:24PM (#21819581)
Currently it is. That can change.
Re:23andMe to share customer gene data with GlaxoSmithKline ... by dekhn on Tuesday December 17, 2019 @06:08PM (#21819967)
Sure, but it's a law, and any change like that would be major national news, debated extensively in Congress, and then, if turned into a new law, would roll out over years.

And it's unlikely it would be passed as a law, because (currently) most people favor privacy for their genomic information.

Personally, I can see the value in allowing health insurance to access genomic information. Assuming it truly correlates with health outcomes, the data would be valuable in accurately personalizing contracts. I believe other indicators are already used.

Re:23andMe to share customer gene data with GlaxoSmithKline ... by zepto on Tuesday December 17, 2019 @06:25PM (#21820128)
Like net neutrality?

There can easily be a hole punched in the law with some weasel words in an omnibus bill that nobody pays attention to until 5 years later and we are hearing about the problems in a 60 minutes exclusive.

Re:23andMe to share customer gene data with GlaxoSmithKline ... by LanceH on Tuesday December 17, 2019 @08:06PM (#21820812)
So if things were different, they would be different.
Re:23andMe to share customer gene data with GlaxoSmithKline ... by zepto on Tuesday December 17, 2019 @11:30PM (#21821815)
What value are you adding with this meaningless comment?

I was refuting the parent’s point:

“any change like that would be major national news, debated extensively in Congress, and then, if turned into a new law, would roll out over years.

Which is manifestly false for the reasons I outlined.

Are you suggesting otherwise?

Re:23andMe to share customer gene data with GlaxoSmithKline ... by dekhn on Wednesday December 18, 2019 @10:46AM (#21826000)
The problem is you gave a single anecdotal example, and there was a bunch of attention paid at the time anyway and lots of people complained.

You can't insert major changes to health laws in omnibus spending bills.

Re:23andMe to share customer gene data with GlaxoSmithKline ... by zepto on Wednesday December 18, 2019 @10:58AM (#21826146)
There is nothing anecdotal about it, since it is a fact.

Almost nobody complained, there was no meaningful mainstream coverage, and most people don’t even know there was a change even now.

And you don’t need to insert a major change to punch a hole in the law. A small exception will do it.

Re:23andMe to share customer gene data with GlaxoSmithKline ... by zepto on Wednesday December 18, 2019 @11:01AM (#21826165)
Personalized contracts means no more spreading of risk, which completely negates the value of insurance companies.
Re:23andMe to share customer gene data with GlaxoSmithKline ... by Sevrene on Tuesday December 17, 2019 @09:23PM (#21821185)
Here in Australia it's not illegal for life insurance, but they've just brought in a morutorium before deciding if they're going to keep allowing it to be legal, so that could change.
Re:23andMe to share customer gene data with GlaxoSmithKline ... by wahern on Tuesday December 17, 2019 @10:37PM (#21821538)
It's problematic for life insurance. You can socialize the costs of the self-selection problem in healthcare, but you can't do the same with life insurance. Maybe at the margins we can tweak things, provide publicly-funded alternatives (e.g. like Social Security survivorship benefits in the U.S.), etc but fundamentally if you prevent discrimination then private life insurance will simply disappear.

When I bought my term life insurance policy they took a blood sample, as they have for decades. I don't know if they did any genetic screening, but if they didn't I presume it's just because the cost+benefit wasn't there yet. Considering that I could do whole genome sequencing today for a couple thousand dollars and game the system, that bodes well for the future as it suggests the viability of tiered screening and risk management strategies that smooth out the costs for most people in the face of increasing self-selection behaviors as genome sequencing costs decline for insurer and insured.

BTW, regardless of whether a life insurer does genetic screening, if you procure a policy knowing of a substantial risk of genetic illness without disclosing it that would violate the terms of most policies and may even rise to the level of insurance fraud.[1] We may see laws limiting the types of affirmative screening that can be done by insurers, but I could never see a law limiting such contractual terms and general background rules as it would certainly destroy the market for life insurance.

[1] Thus, if you want both life or disability insurance and genetic tests, the legally and ethically correct thing to do is buy the policy first and then do the genetic tests afterwards. It makes sense to buy life and disability insurance at a relatively young age, anyhow, like in your late twenties or early thirties where your income has [hopefully] already risen to a level where you can buy a multi-million dollar policy without a penalty--from a risk management perspective insurers can only offer the best rates when there's a correspondence between the policy amount and existing, proven income. By contrast, it makes less sense to do genetic testing until you have reason to, like in middle age. That's fortuitous and one reason why we should be less concerned about the effect of voluntary genetic testing and disclosure rules regarding life insurance. (Obviously affirmative genetic screening is a different problem.)

Re:23andMe to share customer gene data with GlaxoSmithKline ... by m463 on Tuesday December 17, 2019 @06:08PM (#21819975)
Would it be legal to use genetic information in advertising?

For example, advertise only to healthy people?

I think about how new privacy laws prohibit "selling" of advertising data, but there's nothing about just "sharing".

Re:23andMe to share customer gene data with GlaxoSmithKline ... by dekhn on Tuesday December 17, 2019 @06:14PM (#21820027)
I don't know enough about the law to say whether this is legal, but I believe correlates of genetic information are already used in advertising.