
23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes' - chmars
http://climateerinvest.blogspot.com/2016/07/23andme-is-monetizing-your-dna-way.html
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aub3bhat
So on one side journalists lament lack of new drug development & just the
shoddy state of healthcare tech, while as soon as any new data that can
potentially unlock new drug targets (23andMe) or provider better support
(Google DeepMind Health) is introduced, Such efforts are quickly demonized
with spread of Fear, Uncertainty and Doubt.

Rather than asking important questions such as at which level the "aggregate"
data is shared, or what safeguards exists, the blog post and source "Gizmodo"
article is quick to jump gun and spread fear (You are the product / you are
being sold!!!). These posts are targeted to derive same emotional response
that drive anti-vaxxers / anti-GMO nuts.

~~~
krisdol
I just want to pay for a service or product and have that be the end of my
interaction with the company as well as the end of the company's use,
possession, and monetization of my data. When I buy a stick of gum I deprive
the store of that stick of gum in exchange for money. On the Internet I'm
purchasing something but the company gets to hold on to and share it
indefinitely. It not only benefits from the money exchange but also continues
to use the very product they sold me to continue to beef up their profit.
Taking my money is apparently just a nice bonus but not what they're really
after. I wish the privacy cost was stated in as clear terms at transaction
time as the monetary cost, and I believe that users should receive royalties
when their data is used for any continued access.

~~~
biomcgary
Your genetic data is nearly worthless, even to you, unless the aggregated
database exists. The real cost is in the analysis and interpretation not the
collection of the data. Thus, for your own benefit (i.e., clear knowledge of
your genetic risks), they must monetize your data (i.e., find someone to pay
them to perform the analysis, whether drug company or charity, e.g., American
Heart Association). As long as they are up front about what they are doing and
protecting your identity, your interests and theirs are fairly aligned. I know
a study funded by a famous non-profit (you have heard of them, I am sure) that
advances the field of study substantially, but it is not yet published (and I
am not directly involved).

~~~
coldtea
> _Your genetic data is nearly worthless, even to you, unless the aggregated
> database exists._

It's not about stealing from X or Y individual -- it's about privatizing and
locking down an immensely useful and valuable global resource -- that
"aggregated database".

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gwern
This is really not surprising. Media coverage of 23andMe all the way back to
its founding has said that it was offering SNP testing at-cost to build a big
database which can be used for all sorts of things (although they were
probably too optimistic about the usefulness of it). The real scandal is how
23andMe has published appallingly little research based on it. When I signed
up with 23andMe, I was totally fine with them selling my genetic data; because
I expected them to be participating in research. Instead, what we get is
occasional cutesy stuff, occasional contribution of a cohort to other
researchers, and a few papers a year on not particularly interesting topics
like coffee consumption (some hits, naturally, since everything is heritable,
but not an important topic). Contrast this to the UK Biobank which has been -
with a fraction of the 23andMe sample size - releasing blockbuster paper after
blockbuster paper over the past year alone!

~~~
biomcgary
I think it may just be taking time for scientists to start working with their
pipeline, which is somewhat cumbersome simply due to their privacy controls. I
predict we will start seeing more studies soon. See my other comment on this
thread for details about one of those studies.

~~~
gwern
That seems highly unlikely. 23andMe has been in operation since 200 _6_. They
hit UK Biobank sample size sometime around 2010. The Biobank researchers have
been managing to pump out paper after paper (check out Bioxiv!) over the past
half-year even though as far as I can tell, their genetics pipeline only
started yielding data back around October 2015. How long are we supposed to
wait on 23andMe before concluding that they just aren't making very good use
of their data from the perspective of the public interest and have focused on
commercialization?

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stevecalifornia
The pros of using 23andMe has vastly outweighed any cons, real or
hypothetical.

Here is a pro: I was able to print out a 3 page report to give to my new
doctor that described what medications I had a low / high tolerance for and
what medical conditions to look out for as I grow older. My doctor was
floored-- and as a result we do a few extra tests every year to keep track of
a potential eye condition I am at a higher risk for.

So what is the potential cons? Perhaps my DNA data is used to help make drugs
to help other people? Even if it's wasn't aggregated and my data wasn't
anonymous I'm still unsure what I am supposed to be afraid of.

~~~
mmcconnell1618
23andme doesn't provide this data. I'm assuming you exported your data to a
3rd party service. Could you share which one?

~~~
legaultm
23andme does provide health data in other countries like Canada.

~~~
burfog
I wonder what it would take to convince them that you are in Canada.

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jacquesm
It's fairly obvious by now that 23andme is just a collector of data, not a
source of useful research or actual results.

The best bit: you pay to give them your data.

In that sense Google and Facebook are more fair, they give a free service and
you pay with your data.

For their customers (the ones who give them samples) 23andme is expensive
infotainment, which will worse case lead to a whole pile of un-necessary tests
done by a generation of empowered hypochondriacs.

~~~
biomcgary
I am friends with some academic researchers that recently completed a study
with 23andMe. My friends designed the experiment, 24andMe researches applied
their design to the data and reported the statistical outcome. For their
field, the results had the most significance seen yet for the phenotype
studied. The genetic variants identified in the study will now go into further
testing to understand the mechanisms by which they are acting, which will take
time. Nonetheless, this will be a substantial step forward for the field.

~~~
jacquesm
Link to the paper?

~~~
biomcgary
Sorry, the paper is not yet published, which is why I have been a little vague
in describing it.

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JulianMorrison
It's ridiculous to be stingy with your DNA information. You're dropping that
stuff all over any sofa you sit on. It's not you (any more than your twin is
you) and it's not yours in any proprietorial sense, it's just data. Chill and
let the nice scientists study it.

So far as I'm concerned, if they can use my information to help study medical
stuff, it's entirely cool by me.

~~~
jomamaxx
That's great, but it's your choice.

Also - that my DNA is on my sofa does not mean it's being published, sold, and
used for purposes beyond my expectations.

~~~
eggie
You're forgetting the other point that the poster made, that your DNA is no
more yours than your grandparents', or cousins, or any other ancestor or
distant relative that shares bits of their genome with you.

By the way, we are all related, and virtually everything in you is not unique.
There are maybe 50-100 point mutations out of 6 billion that are unique to
you.

And anyway, what's the point of your genome unless you can compare it to
others. So, share already. We're all just remixes of each other.

~~~
jomamaxx
"You're forgetting the other point that the poster made, that your DNA is no
more yours than your grandparents', or cousins, or any other ancestor or
distant relative that shares bits of their genome with you."

No, my DNA is distinct from theirs, and it's 'mine'. :)

Those 50-100 points identify me, uniquely.

~~~
JulianMorrison
They identify you and all your clones and twins, who are separate people.
Which you may currently have none of, but that might not continue to be so.

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a13n
The data is anonymized, who cares?

Good for 23andMe. We could learn very important things from that data in
aggregate. We need more aggregated data in healthcare.

~~~
krick
What do you mean "anonymized"? It's your DNA, it basically is _you_. Much more
than your name, email address, or whatever you consider de-anonimization.

~~~
avree
It's not you until you tie it to your identity. I leave "DNA" all over; people
cannot match it to me unless they have an existing sample that is definitely
from me.

~~~
DanBC
They can get close if they have your relative's DNA.

[http://www.bbc.co.uk/news/uk-england-
somerset-36245888](http://www.bbc.co.uk/news/uk-england-somerset-36245888)

A man killed a girl. His DNA was gathered at the scene. 26 years later his
daughter committed a minor crime, and had her DNA taken as part of her arrest,
which led them back to him.

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binaryanomaly
Would be better to link directly to the original article/source?

[http://gizmodo.com/of-course-23andmes-business-plan-has-
been...](http://gizmodo.com/of-course-23andmes-business-plan-has-been-to-sell-
your-1677810999)

~~~
nolepointer
Yeah, and that article was published last year ...

~~~
binaryanomaly
Right. But still makes it to the top ;)

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Symmetry
When I signed up for 23andMe at least half of my motive was to help them
discover new things about people's genomes including the development of new
drugs. So good for them, basically.

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eli
What wrong with using aggregate dna data to help target cures for Parkinson's?

~~~
dd9990
Even with the best of intentions things can go wrong and there are lots of
unanswered questions in this emerging field. I'm sure the medical
organizations involved are very aware of these problems, like protecting the
privacy of those in the datasets. We've seen medical data de-anonymised in the
past - it's not a trivial problem to solve. Likewise there are moral issues.
What happens if you discover X% of people in the study have an extremely high
risk of developing Parkinson's? Do you contact them? Do they have the right to
know? Do you have the right to tell them? Would they even want to know? These
are questions we're only starting to think about now.

~~~
corecoder
> Do you have the right to tell them?

This I don't understand: what does it mean? What is the right to warn people
of dangers? How do you earn such a right? How do you lose it?

Have someone else tell them if you think you haven't the right somehow.

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j2kun
23andme has a very clear privacy policy on their landing page. So what's this
all about?

~~~
pdkl95
A privacy policy is not informed consent. Nobody would have a problem if they
_asked first_. The tech industry likes to act as if they have a right to use
any data they get their hands on for any purpose; why wouldn't you expect a
hostile reaction when people see their data being used without their explicit
permission?

A common response is that nobody would participate with a proper opt-in
system. That lack of participation is sending a clear message.

~~~
ig1
IIRC 23andme gives you a very specific "agree for this data to be used for
medical research" consent prompt.

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Kequc
As a 23andme customer I guess this means that drugs that suit my DNA are
therefore as a result of this study going to benefit me before anyone else. I
don't mind if my DNA is used for scientific research and I don't call that a
moral grey area in any way. It's data.

Good for them and for me.

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gettingbored
I'm sad to see such poorly written blog post with a clickbait title get all
these points.

I'd suggest that you instead read this well thought out (and rather complete)
paper about the biomedical ethics at play within 23andMe's two-sided market
business model.

(no paywall to download the paper)
[https://bmcmedethics.biomedcentral.com/articles/10.1186/s129...](https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0101-9)

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Fishman343
This sort of data is exactly what I would not want to entrust to any
organisation in the midst of all of the leaks and hacks we are seeing in the
news. Let alone having them sell it legally to god knows who...

I remember reading about a hack/leak of, I think around 20,000 people's
fingerprint data from the US government, and thinking to myself about the
consequences of this biological data falling into the wrong hands. If there
are any spies in that list and any country, say China, gets a hold of it,
there is no way to update that spy's security, you can't change their
fingerprints the same way I can think of a new password after a hack.

I might not be worried about anyone seeing my DNA profile at the moment, but
maybe I will be in the future, and once the data is out there it can't be
taken back or changed on my end.

~~~
toomuchtodo
My entire genome is publicly available through Harvard's Personal Genome
Project. I weighed the pros and cons, and settled on helping contribute to
progress was more important than my fear of the unknown future.

~~~
dekhn
Me too! [https://my.pgp-hms.org/profile/hu80855C](https://my.pgp-
hms.org/profile/hu80855C)

let me know if you find anything interesting. When I had it sequenced, the
genetic counsellors said I had none of the common disease risk factors, which
seemed a bit surprising.

I have a background in biology, have done extensive work with genomic data,
and weighed the future risks pretty carefully. Ultimately I didn't see any
real problem with posting my raw BAM files and I assume a dedicated person
could identify me if they tried.

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chillingeffect
Most people are missing that by only making this info available at market
rates, rather than as a non-profit, it doesn't benefit the general good/public
equally. It benefits incumbents asymmetrically.

Furthermore, by only collecting data from those with excess income,
afflictions of the poor will remain less diagnosable.

There will be some trickle-down into poorer people, but if you think it
"doesn't hurt to help people get healthier," try to see you're mainly helping
wealthy people get wealthy people better. It's a slow-motion form of eugenics.
We all know how well trickle-down theories work.

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dominotw
I have had 23andme for last 7-8 years; I've also paid for all their upgrades
over the ye.ars

I've not gotten a single useful information out of it and I don't hope to in
near future. It got a bunch of useless information like ear wax type, hair
color ect right but overall its waste of time and money.

Privacy concerns over ppl exploiting raw data are overblown given its
impossible to draw any useful conclusions from just raw data.

You can find bunch of raw 23andme exports on github.

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ageofwant
Very presumptuous article, not that that's new. When I paid my $100 several
years ago I hoped and expected that my data would be sold of as many times as
possible. So much more good can come of it than bad.

Insurance companies can and do insist on health checks before they insure you,
unless prevented by legislation. This is not new.

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phkahler
Does 23 and me actually sequence your DNA? I thought they just looked for a
whole bunch of specific gene variants with known effects or associations.

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palmdeezy
Is it anonymized? I do wonder if the costs are or will one day be worth the
personal gain?

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kjenkins
If you're interested in personal DNA sequencing but don't want your genetic
data shared (or you want to be able to analyze your entire genome, not just
the small bit 23andMe does), check out Guardiome. This is their entire mission
statement as a company.

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dgcoffman
Happy to participate. You're welcome, whoever benefits.

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__a__
Is your DNA is now the "intellectual property" of a company?

The company sells rights to access sequence infromation from your DNA, i.e.,
their intellectual property, for up to 60 million.

Do you get any of that "up to 60 million"?

And why should you?

It's not like it's your DNA.

You sold it.

Well, actually you paid a fee to some company -- that has been threatened with
being shut down by the FDA -- to take your DNA.

Who started this company? Ex-wife of Google founder.

According to Wikipedia the fee has jumped from $999 down to 99 then to 199.

So what's the service worth?

I don't know but I have a feeling it ends in 9.

Personal genomics is a great idea that has been around for a long time. Well
before Google and Facebook.

But this company, applying "the Google approach" to biotech, was never a good
idea.

That's only my opinion.

It's quite possible each of the 1 million or so donors was happy to donate
their DNA "to science".

The issue I have with "the Google approach" is that the company is not doing
much except collecting data and running cheap tests -- and of course
marketing.

There's no world class research at 23andme. God only knows what they'll do
with the money they get from selling people's personal information.

They are just middlemen, selling off people's personal information for a easy
profit.

Very innovative.

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mevile
Nobody is forcing anyone to use 23andme. If this bothers you don't use this
service?

~~~
civilian
We didn't know they would do this when we signed up and gave them our DNA
years ago?

