
23andMe to share customer gene data with GlaxoSmithKline for $300M - Taurenking
https://www.tomsguide.com/us/23andme-gsk-dna-data-deal,news-27685.html
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crmrc114
Yeah, look- I got my tests back when $99 covered everything. I got my
grandparents on each side to spit in tubes for me. I was able to fill in may
missing gaps in my genealogy as well as use snp-pedia to look at my own
"source code". Its fun.

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.

I knew this was something they were going to do and I am happy they are doing
it. I hope we can come up with some profitable drugs that will cure some of
these more complicated disorders. Just think of what we could do if we could
easily treat Alzheimer's or other age related disorders. I am not even talking
about cancer or diseases like pendred syndrome that could be possible result
in couples hacking nature and removing genetic illness from their kids.

I am excited. Dangers, sure. Debate, totally.

~~~
mistersquid
This genetic data will be used by 3rd parties not (only?) altruistically but
to maximize profits. Any products developed using this genetic data will
likely have profit as their primary motive.

Wanting to accelerate the development of novel drugs and therapies to treat
disease is great. But rather than giving a private company carte blanche to
share data with third parties trusting (hoping?) that the outcome will benefit
humanity, it would be better first to establish a sensible regulatory
framework around genetic information and its uses by private companies and the
governnment.

~~~
marticode
If curing and saving people has the side effect of some company making money,
I think I can live with that.

~~~
raven105x
Saving people is extremely profitable - curing, however, is anything but.

~~~
roenxi
Curing people is still profitable. If you are competing with an incumbent who
only treats symptoms you can claim their business by curing patients.

Unless somehow it were possible to gain a monopoly on curing people, which is
plausible but fundamentally not the responsibility of the researchers.

~~~
kevingadd
Have you heard of patents? For-profit pharmaceutical companies use them to
establish a monopoly on drugs they develop.

~~~
kungito
Patents last 20 years, humanity existed for thousands. We can wait 100 more
years for cures if it's the optimal way

~~~
autoexec
The drug companies have a solution to patent limits called "evergreening"
where once a patent is about to expire they make a very slight modification to
the formula, pump massive amounts of cash into marketing it as "new and
better" even when there are little to no benefits over the old formula.
Doctors are easily bribed or mislead into prescribing the expensive new
formula over generics and drug companies can continue to make large profits on
old drugs instead of innovating.

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larrik
> "The problem with a lot of these privacy policies and Terms of Service is
> that no one really reads them,"

As a long-time 23andMe customer, I remember the opt-in for this feature to be
very visible and clear.

~~~
lurker458
they share with GSK even if you opted out, because GSK is part owner.

~~~
Someone1234
Is that a fact or speculation?

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wenc
I see the word DNA being bandied around here. I wonder if folks here
understand the difference between "genotyping" (what 23andme does) and full
"sequencing"? [1]

Genotyping only returns _variants_ of interest (SNPs) which are specified up
front -- not the full sequence. It's a smaller dataset.

Sequencing gives you the full genome -- which is currently too expensive to do
at consumer scale (though prices are falling). 23andme does not do this. This
means the type of genetic research that 23andme can do is somewhat limited.

[1] [https://customercare.23andme.com/hc/en-
us/articles/202904600...](https://customercare.23andme.com/hc/en-
us/articles/202904600-Difference-Between-DNA-Genotyping-Sequencing)

~~~
hobofan
Is genotyping data that useful for drug development?

From my intuition, genotyping data (where you specifically look for already
known gene variants) is per definition barely useful for making "breakthrough
discoveries". If that were really the case I would expect a much higher price
point than $300mil.

~~~
asdff
It absolutely is extremely useful. Your genetic predispositions toward
disease, treatment response, anything really, can be due to a combination of
these known variants. Tracing your ancestry is done with these variants. These
are regions that are commonly variable in the population.

[https://en.wikipedia.org/wiki/Single-
nucleotide_polymorphism](https://en.wikipedia.org/wiki/Single-
nucleotide_polymorphism)

------
chubasco
Okay for all the people that are talking about how great this is, try this
one.

What if it turns out a company that they sold all of their data to was later
contracted by a government to develop biological weapons? And what if they
were suddenly able to target those weapons at specific populations because of
all the DNA data they had?

Is it still great that they can do this?

EDIT: Here is a concrete hypothetical for people that pretend they don't
understand what I am talking about...

Imagine that [oppressive communist superpower] decided that they were tired of
all the criticism they get for their treatment of their [minority Turkic
ethnic group originating from and culturally affiliated with the general
region of Central and East Asia] population. Rather than overtly mistreat
them, they (via third-party contractors) go to the DNA database and find out
that members of that population typically share a vulnerability to a dangerous
strain of flu to which the general population has a resistance.

Rather than overtly oppress them in camps, they could now just custom tailor
diseases to handle the "problem" for them, and not have to suffer the PR
backlash.

~~~
Accujack
That's like saying what if the charity for the homeless to whom people donated
money suddenly was found to be a front for a global human trafficking (slave)
organization.

People would be rightly outraged and angry, but that doesn't mean they made a
mistake by giving their money to the charity.

Everyone makes judgement calls every day, it's the way the world works.

~~~
t_serpico
The difference here is that your input is used to specifically exploit you and
others like you.

~~~
Accujack
So no difference, then?

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partiallypro
I knew they would do something like this when I used 23andMe. I have no
problem with it at all. If my DNA helps people well after my death, I'm
totally fine with it.

~~~
ecf
The problem is that you’re not just selling your DNA. You’re selling the DNA
of everyone in your entire family.

Do you have their consent? Because I’d be really, really pissed off if I found
my sister or anytime in my family did this test.

~~~
shadowgovt
You don't own your sister's DNA; you don't get to tell her what she does with
it.

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damnlies
Selling. That's called "selling". Sharing for money is called "selling".

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blululu
I would like to add that this is only a small part of the ethically fraught
landscape of DNA databases. A proper regulatory framework is needed.
Fundamental to the problem is that consent is not necessarily possible with
this data because of the high degree of correlation across the population. If
a family member decides to get some recreational genetic testing done on
themself then they have given consent on your behalf for you to get that
testing done as well.

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JoeAltmaier
Did they violate their privacy terms?

"To give or decline consent for 23andMe Research. By agreeing to the Research
Consent Document, Individual Data Sharing Consent Document, or participating
in a 23andMe Research Community you can consent to the use of your de-
identified data for scientific research purposes."

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Gatsky
This is just like facebook all over again. In the early days people said “so
what if they have my data, I can play farmville and chat to my friends”. Fast
forward 5 years, everyone starts to realise they’ve given away too much for
too little. Except now you also give away data about your children and all
your blood relatives as well.

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pkaye
As someone living with various health issues, I'd rather share my gene data
and hope that GSK makes a major breathrough on something. Atleast that will
push a gold rush for others to search for others cures. Maybe I it will
eventually be one that lets me live a normal life.

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methehack
What's preventing a health insurance company from buying 23andMe and doing
what they want with the data? (i.e., reducing costs by denying coverage...)

~~~
carbocation
For that specific question, the GINA legislation would be a barrier.

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derision
Sounds like a good thing to me

~~~
sihoang
except when the treatments are only for those who have a lot money or
expensive insurances

~~~
larrik
That's how a lot of stuff starts, and then the price goes down while the kinks
are worked out.

I don't really know what the alternative is here...

~~~
1024core
> That's how a lot of stuff starts, and then the price goes down while the
> kinks are worked out.

By that logic, Insulin would be dirt cheap today, right?

Hint: it is not.

~~~
themaninthedark
What is considered dirt cheap?

One kind of insulin can be bought for ~$25 at Walmart.

Now, this means that you have to monitor you sugar levels, have a restrictive
diet, etc. All things that are very restrictive but better than dying that
people did when insulin treatment was first being developed.

Now we have newer, reformulated insulin that allows for a more permissive
lifestyle. That is expensive.

Should the newer stuff be cheaper? It certainly allows for a greater QOL and
took time and money to research.

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SloopJon
This is the HN post that got the most traction since this was reported in July
2018:

[https://news.ycombinator.com/item?id=18831370](https://news.ycombinator.com/item?id=18831370)

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devtul
On another thread someone was talking about the possibilities of the use of
big data on medical records, but people pointed out some restrictions, be it
HIPAA or other legislations regarding personal medical information, that would
prevent that from happening.

TBH I think we benefit from research having access to such data, if it means
to open new venues for development of better and cheaper drugs. But it sure
leaves me scratching my head, maybe because the way it happened, for profit
company selling user DNA data to another for profit without any cashback to
the customers.

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mgamache
DNA is where technology renders the idea of privacy and ownership moot... If a
few people related to me share their data 23andMe has more than enough to
convict me of a crime or predict my health to some degree. My DNA is not just
mine, but it's really shared property. We really have few social conventions
or intuitions to cover this situation (I think).

~~~
Eleopteryx
>My DNA is not just mine, but it's really shared property.

But you didn't get a cut of the $300m.

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jiveturkey
PSA: California collects DNA samples of all hospital-born babies, without your
consent and without notification.

[https://www.google.com/search?q=california+dna+collection+ba...](https://www.google.com/search?q=california+dna+collection+babies&rlz=1C5CHFA_enUS879&oq=california+dna+collection+babies&aqs=chrome..69i57j33.4538j0j9&sourceid=chrome&ie=UTF-8)

You have to write a letter to some authority to have the DNA sample destroyed.
You cannot prevent the collection ahead of time, so you have to trust that
they have actually destroyed both the sample and any analysis they may have
already done on it.

We did this, it took about 2 months. We got a letter back that the sample had
not been used for any purpose and was destroyed.

~~~
asdff
what a waste of a sample. hope your kid doesn't wake up one day at 30 years
old with huntingtons.

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alexnewman
WTF. I didn't sign off on this. Also who are they using scanning this DNA? Why
do I trust them. I guess my DNA is everywhere anyways. I just wish I had more
of a say about my genetics. I am so glad 23andme never accepted my DNA

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solotronics
What happens if you submit someone elses DNA as yourself to these products?

~~~
manmal
Chances are high nobody will ever find out.

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zymhan
1.5 year old article

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cosmodisk
The problem with a lot of these privacy policies and Terms of Service is that
no one really reads them," Sometimes things get escalated to me when my team
can't handle calls with upset customers. Our T&Cs is one page but covers A to
Z. Some people openly admit "they don't read that shit" and yet expect you to
bend every rule you have in place for them. I'll leave others to comment on
moral aspects of this story,as it's got a lot of it on each side of the coin.

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andreilys
I wonder if those of us whose private data is used to find drugs with billion
dollar P&L will receive a royalty check in the mail

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droithomme
23andMe's executives still claim that HIPAA doesn't apply to them because in
their opinion DNA is not personal medical information.

Yet here they are, again selling it for express medical purposes.

What's the fine for 5 million intentional HIPAA violations? Doesn't matter.
They'll never be held accountable and they know it.

~~~
toomuchtodo
HIPAA doesn't apply when it's patient directed request (which is how 23andme
is structured).

~~~
balls187
I think you mean consumer generated health data--i.e. like readings from a
fitbit heartrate monitor.

A patient directed request is absolutely covered by HIPAA.

~~~
toomuchtodo
That’s not my understanding based on conversations with an attorney for a
project I was involved with for medical research. As always, consult an
attorney; don’t take comments in an online forum as gospel, and get whatever
sign off you need in writing.

~~~
balls187
Perhaps I misunderstood what you meant.

A patient has no obligation to adhere to HIPAA rules for their own PHI, if
that is what you meant.

In my medical work, a patient directed request is one where a patient has
authorized the transfer or release of their PHI. That transfer/release is
absolutely covered by HIPAA.

However, if you are a covered entity as defined by HIPAA, you are required to
be compliant to the privacy and security rules set forth in HIPAA for PHI
data.

~~~
droithomme
My understanding based on arguments with a friend of mine who is a 23andMe
executive, is that they argue that DNA data is not medical information, even
when sold to medical companies for medical purposes. Their argument is not
that the data disclosure was authorized by the patient for a specific medical
purpose. I disagree with him that DNA information is not medical data. But if
it's simply not medical or even personal data at all then he's right, they can
do with it as they please.

I really think this needs to be adjudicated because people believe judges even
when the facts are obvious and the arguments on one side are entirely
economically self-serving and absurd (as 23andMe's claims about this are IMO).

Also in my personal experience with medical providers, they provide me with
"privacy agreements" they require I consent to before they provide services
and these agreements typically say I consent to their giving my private
medical data to third parties for unknown purposes unrelated to my treatment.
I have been point-blank denied treatment from hospitals, emergency clinics,
and specialists, several times because I have refused to consent to these.
Coerced consent, given under threat of actual death, is not true consent.
Courts don't recognize that and med-tech denounces my position. Massive
legislation putting an end to this is necessary and I have zero hope that will
happen since Congress is in the back pocket of the misnamed "health care"
industry.

~~~
balls187
This is what HHS Gov states:

Does the HIPAA Privacy Rule protect genetic information?

Answer:

Yes, genetic information is health information protected by the Privacy Rule

[https://www.hhs.gov/hipaa/for-professionals/faq/354/does-
hip...](https://www.hhs.gov/hipaa/for-professionals/faq/354/does-hipaa-
protect-genetic-information/index.html)

~~~
droithomme
> Like other health information, to be protected it must meet the definition
> of protected health information: it must be individually identifiable _and
> maintained by a covered health care provider, health plan, or health care
> clearinghouse._

Yes, exactly, bingo, and there is the carefully crafted by expert
congressional advisors loophole. Gene testing companies aren't any of these
three categories, nor is virtually anyone else that is trading personally
identifiable genetic data.

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devy
This is an old news. Can mod change the title to add (2018) suffix?

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nshepperd
Good. This is exactly why I signed up.

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mastrsushi
Why should we be concerned with this?

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sdinsn
(2018)

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marcell
[2018] tag

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binaryblitz
This is from July of 2018. Why is it being reposted now?

~~~
rahuldottech
Why should it not? Old articles can still be relevant. That said, it should be
tagged "(2018)" as per the guidelines.

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hailhash
Theranos 2.0

------
2dvisio
So many questions...

1\. Will 23andme share returns with the people who provided the sample in the
long term?

2\. Are the drugs that GSK going to produce being charged thousands a vial?

3\. what happens to the data of those that are covered by GDPR?

Quite sure all the answers will disappoint me.

------
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