
23andMe Sold Access to Your DNA Library to Big Pharma, but You Can Opt Out - walterbell
https://motherboard.vice.com/en_us/article/xwkaz3/23andme-sold-access-to-your-dna-library-to-big-pharma-but-you-can-opt-out
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aaavl2821
I know this isn't a popular stance here but I take a number of issues with
this article

> As the infamous pharma bro Martin Shkreli demonstrated, pharmaceutical
> companies can and will make life-saving drugs prohibitively expensive to
> juice their bottom line.

I agree that pharma pricing is a problem, but framing the public debate around
the issue with Martin shkreli basically ensures the conversation will be based
on sensationalism and appeals to emotion, rather than facts. As it stands now,
the public doesn't understand pharma pricing so can't assess how likely any
proposed legislation is to actually lower price. That enables the pharma lobby
to work behind the scenes to make sure any govt actions sound important but
are toothless. There are many pharma pricing cases that are more egregious,
look at acthar gel as an example. If you want a non-biased, economics driven
assessment of value based pricing for drugs look at ICER or NICE

> This means that 23andMe customers will, in effect, be charged twice for any
> potential “innovative new medicines” their DNA helps produce. The first time
> they paid for the DNA sequencing service; the second time they pay for the
> medicine that it helps create

This conveniently ignores the hundreds of millions of dollars per medicine
that pharma companies will have to invest to get a drug to market. Pharmas r&d
productivity is on a steady decline. So GSK will probably spend a ton of money
developing drugs based on this data, and it's likely that they won't end up
with enough meaningful new medicines to offset the cost of research. I can
elaborate if people want

> Another alternative would be for 23andMe to partner with non-profit public
> programs, such as the National Institute of Health’s precision-medicine
> initiative

In which case you'd be giving your data to Google, who works with this NIH
initiative to analyze data [0]. Personally I'd rather GSK have my data than
Google -- at least GSKs entire business model isn't selling personal data

[0] [https://verily.com/projects/precision-medicine/precision-
med...](https://verily.com/projects/precision-medicine/precision-medicine-
initiative/)

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jasonvorhe
> Ostensibly, the genetic information is going to be used for “research and
> development of innovative new medicines and potential cures.”

Pure evil.

Is there an alternative where I can get my DNA analyzed for free while still
granting access to it to scientific research while trusting that the DNA won't
be leaked in a couple of years?

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efoto
(ready to get down-voted) why would I want to opt out if somebody uses my
anonymized DNA to try discovering a potentially life-saving drug?

~~~
dragonsky
There is no such thing as anonymous DNA.

Due to the nature of DNA your anonymity is directly reliant upon the anonymity
of everybody you are related to, with a drop in accuracy proportional to the
distance of the relationship.

Your DNA may be out there without any link to you. However if your brothers
DNA is also out there but is however linked to him, then by comparison the
fact that your DNA is a sibling of his, is easily determined. In fact this is
the whole point of the current "Find you ancestors" craze.

~~~
walterbell
DNA is also being used to establish nationality,
[https://news.vice.com/en_ca/article/wjkxmy/canada-is-
using-a...](https://news.vice.com/en_ca/article/wjkxmy/canada-is-using-
ancestry-dna-websites-to-help-it-deport-people)

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zneveu
This post made me think of George Churches new startup aimed at making
research studies like this opt-in and pay money to participants, while making
it easier for researchers to find large datasets for their research. While
their bockchain-based platform seems overhyped, if anyone is in a position to
accomplish this, it's George Church, so maybe they stand a chance at changing
the way things are done in that industry.

[https://www.nebulagenomics.io](https://www.nebulagenomics.io)

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negamax
Seems like they have learned nothing from Facebook rout!

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1011_1101
Big surprise.

