Are you comfortable with your private genetic information being handed to PHaRMA and AHIP?

Question

23andMe, the second-biggest consumer DNA testing company (after Ancestry) has announced a collaboration with Glaxo Smith Kline, the global pharmaceutical company originally founded in England (at one time their head office was just a few miles down the road from LostCousins).

 GSK are investing $300 million in 23andMe according to GSK's announcement, though it wasn't  mentioned in the email 23andMe customers received from CEO Anne Wojcicki.

 But this tie-up is all about health, not ancestry,  there's an initial 4-year period, with an optional 5th year.

And what is there to stop Glaxo Smith from selling the info they receive from 23andme with the Association of Health Insurance Providers?  Answer: Nothing. And I suggest that AHIP already gets their hands on that info as a partner or investor in 23andme.

This is merely the latest event in a series of deals and mergers with PhARMA and eventually the health insurance industry

Here is a 2015 article in the same vein

https://www.forbes.com/sites/matthewherper/2015/01/06/surprise-with-60-million-genentech-deal-23andme-has-a-business-plan/#16a5bb842be9

Comments

Some of my thoughts on this, plus some background that might not be readily apparent, in this post from July 25. I'm actually unaware of any direct-to-consumer DNA testing company other than 23andMe having inked significant deals or mergers with Big Pharma. 23andMe does have my permission to use my test data, BTW.

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Well you should get reimbursed, in as much as they are profiting off data which you funded.

Such activity is parasitism.  And you and everyone else should be extremely concerned where this is going.

At present we are protected by GINA, which prohibits insurance companies to underwrite (rate or deny) Health Insurance (Life Insurance is not so protected) on the basis of genetics. However, given the best congress money can buy and an admin that follows the money, it won't be long before GINA is revoked.

Myself at age 79, and nearing end of life thanks to the Big C and the fact that I am already covered by Medicare and the best supplement available. The concern and probability does not affect me, but I am not self centered.

Greed, deceit, theft, dishonesty does concern me though.

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Not sure where deceit, etc. comes in. 23andMe is very upfront about what they do. They started as a health screening service and not an ancestry service. Genealogy became a bigger part when they were nearly shut down by the FDA over some original health screening services. those have all been alleviated. There is no deceit involved. Greed perhaps, but not deceit/dishonesty.  I found their terms of service to be fairly readable when a lot of places make them so cryptic you can't tell what they are saying.

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well of course, that is the main reason to use familytreedna.com. They do not sell to insurance companies.

Some people opt into those that do sell because they want to aid in those efforts. I do agree that this level of sharing needs to be stated upfront so that people can choose the company that meets needs....

Answer 1

This type of use of your DNA is in the terms and conditions that you agree to to use their services so shouldn't be a surprise to anyone. Always read the fine print. They do say they don't release the identity of the DNA source.

Answer 2

23andMe's consent form clearly says that they only share de-identified information. This means that, unless they are violating their contract with customers and engaging in fraud, the data is not identifiable to any particular person and could not be used by a health insurance company to deny you coverage. More importantly, as long as Obamacare remains in place, insurance companies can't use DNA information or any other information about pre-existing conditions to deny coverage or charge higher rates.

Answer 3

To answer your question. NO

Answer 4

And that is the reason why I won't get my DNA done voluntarily. Once the results are out there, one can never be absolutely sure who has access to it, especially a long way into the future.

Comments

I was quite happy to take a DNA test.

I just chose not to use 23&Me and Ancestry for this specific reason!!

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I'm not in the US, Robynne, so I'm unconcerned with insurance etc. A very reputable US research establishment would have appreciated my DNA to research a medical condition I have. To be honest, I was torn. In the end, I decided my DNA could just stay here in NZ for now - people are wary of the internet, but at least I know what people can find online. I don't know what my DNA holds or how it could be used.

Answer 5

Yes, quite comfortable!  It it part of the terms of condition that they can sell de-personalized information - clearly stated.

Answer 6

Yes, I am comfortable with the way 23andMe shares my genetic data with entities like GlaxoSmithKline. Not only is it anonymized, it is pooled ("aggregated"). For example, GlaxoSmithKline may learn that X% of cases have a certain result for a certain SNP, while Y% of controls have that result. I am just one of many data points that contributed to the overall percentage.

Disclosure: I have had consulting agreements with 23andMe, and I am currently one of their Ancestry Ambassadors.