
23andMe has signed a $300M deal with GlaxoSmithKline - dwighttk
https://www.businessinsider.com/dna-testing-delete-your-data-23andme-ancestry-2018-7
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jonlucc
I'm not exactly an expert in this field, but I work in big pharma, and I've
seen the presentation 23andMe gives to drug companies. Basically, there are
two ways GSK can use your data stored at 23andMe, and both require explicit
opt-in. First is that they can basically just give access to huge databases.
You might be surprised at how inefficient this will probably be for target
hunting. There are already lots of GWAS studies that don't result in a single
viable drug target.

The other way, and where I suspect the bulk of the $300M/4yrs is going, is in
recruiting patients for clinical trials. GSK can tell 23andMe that they need
150 patients living near metropolitan centers who have indicated they suffer
from X disease, and don't have Y mutation. This could drastically reduce the
cost of recruiting for Phase 2 trials (though it may skew the patient
populations in ways we haven't really had to deal with before). <edit> If I
remember correctly, 23andMe contacts these potential patients to ask if
they're interested in the GSK trial, then refers them to contact the GSK
clinical trial site. They don't just give your phone number to GSK </edit>

I guess I'm not really sure what the panic is about. First, every step is opt-
in. Second, the data provided en masse is blinded to patient identity and
industry standard is to disincentivize unblinding the data. Am I too close to
and brainwashed by the industry to see what's wrong here?

~~~
prepend
My concern is not only privacy but equity. Commercialization of my data
without consent or compensation is my fear. Nice that it’s opt-in now. I hope
it stays that way or there’s not a massive breach.

~~~
SlowRobotAhead
>Commercialization of my data without consent or compensation is my fear.

I agree sort of, but how interesting is it that many people seem to really
care when it’s their immutable genetic information to 23&Me - but when it’s
their habitual and social information to Google or Facebook they seem care a
lot less.

~~~
prepend
I care about Google and Facebook as well.

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Someone1234
This article is highly disingenuous.

23andMe ask you during sign up if you wish to take part of anonymized
research. They ask you again for each person whose sample you submit. You can
also opt out at any time.

The article author even knows this, since when they asked Ancestry (23AndMe's
owner) that was exactly what they were told. So why does the article have such
a hyperbolic tone and misleading information?

I don't have high expectations for Business Insider but this article still
disappoints me. This is tabloid level "journalism."

~~~
eekfuh
AFAIK 23andme and Ancestry are competitors. This would makes sense why they
asked Ancestry what they do and doesn’t use that to make the argument as each
company may treat sharing differently.

~~~
ryanmercer
>AFAIK 23andme and Ancestry are competitors

I'm not sure I'd call them competitors. Yes they both take your spit and
process it, yes they both allow you to see potential extended family but
that's about the only similarities.

Ancestry added it as an extension of their genealogical services while 23andme
was originally for personal medical discovery before the FDA came down on them
and they had to change tactics.

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Tycho
How much of a population’s DNA needs to be mapped before you can reliably
triangulate the the identity of any individual by comparing to known DNA
profiles? For instance if I have two cousins on different sides in the
database, can they look at my DNA and narrow down the possible matches to me
and my siblings of the same sex? What about more distant relations?

(I’m thinking about how police caught that serial killer recently because some
of his relatives had used one of these sites)

~~~
dangrossman
That's how a local cold murder case was solved. DNA from a 25-year-old crime
scene was run against a genealogy database, and found a familial match. Police
set up a sting to obtain DNA from that person's relatives. They found a DNA
match with the brother's water bottle taken from the trash. The brother had
never submitted a DNA sample to any databases himself.

[https://lancasteronline.com/news/local/christy-mirack-s-
slay...](https://lancasteronline.com/news/local/christy-mirack-s-slaying-
solved-with-arrest-of-lancaster-
county/article_f05a2ee4-78b2-11e8-ad10-4382ef42f96d.html)

The alleged killer was the DJ at my wedding. The trial's in May.

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JofArnold
Title requires reference to this article being from July 2018

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skizm
I can't believe 23andMe isn't free yet. Or more accurately, that a competitor
hasn't come in and offered a free version which would force 23andMe to make
their product free. The fact that they can get away with _charging you_ to
collect and sell your genetic information is nuts. Same goes for Amazon's
Alexa.

~~~
gwern
This is almost the case, as far as just the raw SNP genotyping goes. Have you
seen the rash of new startups like Nebula or Helix? They can be 'free' in some
cases. Which makes sense as the genotyping cost has plummeted to like $20-50
in bulk.

But you're underestimating that one of the big draws of 23andMe is their
detailed ancestry analysis - which isn't going to be replicated overnight by a
competitor - and their related social networking/genealogy aspects, which
definitely isn't replicable overnight. I have zero interest in that but I
still get contacted every couple of months on 23andMe by genealogy hobbyists
looking for more information. (And they also have FDA-compliance on some of
their health reports, which isn't easy either.)

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xiphias2
I'm happy that 23andMe is using my data for drug research. I don't want
companies to read my private messages, but drug companies are trying to fix
things in me, and ask for a lot of money in return, which is more fair than
what many other companies are doing.

~~~
vagab0nd
Same here. I care about privacy. But in this case I'm willing to trade that
for contribution to medical research.

Am I being too optimistic?

~~~
FlyMoreRockets
I don't think it's possible to be too optimistic. Naivety could be an issue
though.

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pyrophane
BTW, you can have 23andMe delete your data, including the genetic data they
have stored. I did this a couple of years back and it was fairly
straightforward. Sounds like it is even more so now:

[https://customercare.23andme.com/hc/en-
us/articles/212170688...](https://customercare.23andme.com/hc/en-
us/articles/212170688-Requesting-account-closure)

Also, at the time you could download an export of your genetic data and that
is probably still the case.

~~~
wslh
Do you know if it's relatively easy to analyze your genetic information
yourself instead of relying on a third party?

~~~
pyrophane
I used Promethease: [https://promethease.com/](https://promethease.com/).

It basically takes your genetic information and maps it to what is in SNPedia:
[https://snpedia.com/](https://snpedia.com/).

The problem with this approach is that what you are getting isn't really
analysis, and you will get lots of conflicting data and information that is
not possible to interpret without specialized knowledge. Still, it can be both
fun and interesting.

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perlgeek
If you are an EU citizen, GDPR applies, which means you can request deletion
of your personal data at any time (unless there is an obligation by law to
keep that data, for example invoices).

I just don't know how well it can be enforced with businesses that don't have
an office in EU land.

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geofft
This article is from June 2018 - I've seen the news go around social media in
the last day or so but I'm unsure what gave it newsworthiness again. Did
people just freak out now that they've gone through the 23andMe kits they
received for Christmas?

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rhegart
Pass legislation regulating the usage of genetic data, meeting proper
encryption standards, purposefully not allowing tracking an individual’s data
and history to a person like companies are not allowed to track a specific
person to their browsing history. Invoke hefty punishment for not following
the laws. And I am completely in favor of this as an opt in. It could save so
many lives and be safe as well.

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keiferski
Question from someone ignorant on the topic: if the US ever adopted a
universal health care system in the future, would disclosures of
23andMe/Ancestry DNA to insurance companies still have negative effect? I’m
assuming that under a universal system, it wouldn’t matter how severe your
conditions are, as you’d be covered anyway.

~~~
Someone1234
23AndMe/Ancestry don't reveal DNA information to insurance companies. Even if
you opt into providing your DNA for research purposes, it is anonymized.

~~~
jasonjayr
But if your DNA report reveals markers for some potential health problems, and
you are aware of that and do not disclose it to the insurance company when you
sign up, they can cancel your policy in the future for not sharing all known
health issues with them, if they find out somehow that you obtained that
report and did not share it.

~~~
dekhn
this is true for life insurance but not health insurance. also it seems
reasonable that your insurance company shiould have access to data that
defines your risk since it helps them make better statistical models to manage
risk across large pools of people as well as tailor the policy costs to your
individualized risk.

This is how it works in other areas, like car insurance; with an absence of
data, your policy is roughly based on the average individual, but as you gain
more years of driving experience (good or bad), they factor that in. Bad
drivers who get in more accidents pay more because their behavior is riskier
and costs more. (the big difference being, in this case, genetic risk is
predetermined and not something you can easily change through behaviur
modification).

~~~
DoreenMichele
I worked in insurance. A large part of how they manage costs is by policy
exclusions. I believe universal coverage where they can't exclude pre-existing
conditions breaks the insurance model.

It really needs to be covered by the government, like police and fire.
Universal health coverage makes sense as a public good. It doesn't really make
sense as an insurance product.

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cinquemb
The writing was on the wall for a long time...

Best that people can do in the future will be to make the tools as cheap and
accessible as possible so we wont have major genetic data monopolies acting as
a walled garden that they can reap the benifts from the most... though they’ll
be the head honchos in town for awhile until then.

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tw1010
Makes me glad I didn't use 23andMe and makes me not ever want to use products
like that in the future.

~~~
jonlucc
Can I ask why? Is it because that company is profiting off of your data or
something else?

~~~
sschueller
Eventually this data will get into the hands of governments and others. Who is
to say that in the future you are not permitted to own a firearm (just an
example ) because you have some gene that may increase your tendancy for
violence (some future research show)? What about an insurance denying you
becuase of a gene? That may be illegal but it's you against Goliath. How many
laws are broken by banks etc. without recourse because the ones affected don't
have the resources to fight it?

Sure these are extremes but if this information is available, eventually it
will be used and most likely first for for profit.

~~~
malvosenior
If you were born in California after 1983, the government already has this
data:

[https://sanfrancisco.cbslocal.com/2018/05/08/california-
biob...](https://sanfrancisco.cbslocal.com/2018/05/08/california-biobank-
stores-baby-dna-access/)

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badwetter
Is this story exclusive to BI? Registration is required to read it.

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tossaccount123
Imagine giving your DNA to the (former)wife of a Google cofounder?

Why are people surprised they would abuse your data for profit?

~~~
SmellyGeekBoy
Because all of the available information indicates that this is very much not
the case?

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shadowtree
If this triggers you, you kind of missed the fact that Roche was an investor
in 23andMe hears ago. Plus 23andMe is located in the Genentech/Roche campus.

Which is the funny bit given GSKs takeover.

~~~
dahinds
23andMe headquarters is located in downtown Mountain View, and we have a lab
in South San Francisco. Nothing on the Genentech campus.

