
23andMe Is Sharing Genetic Data with Drug Giant - draenei
https://www.scientificamerican.com/article/23andme-is-sharing-genetic-data-with-drug-giant/
======
jrs235
dupe?

previous discussion:
[https://news.ycombinator.com/item?id=17609906](https://news.ycombinator.com/item?id=17609906)

------
buboard
About time. 23 sits on a potential treasure of data from genotyping and
surveys which is currently being used to tell you trivialities such as your
"ancestry and neanthertal composition" (at least in europe). OTOH the data
might prove to be a disappointment but at least it's worth giving a try. This
is what i hoped for when i signed up, and i m surprised it took a decade+ to
happen.

~~~
nerdponx
That's the beauty of obtaining consent. If you want to consent to it, you can
consent. If you don't want to consent to it, can withhold consent.

~~~
nnutter
Can you explain how one gives consent? Is it opt-in or opt-out? Is there any
judgemental language to try to convince people to consent?

~~~
a_bonobo
It is opt-in.

23andMe has done similar things before, then they contacted potential
candidates and asked for opt-in specifically for that project. For example, if
they'd run a prostate cancer study with some university they'd contact middle-
aged men and ask whether they want to be involved in a prostate cancer study.
Language would not be neutral, something like 'Do you want to help stop this
cancer?'

Here are the papers 23andMe has published using their data:
[https://www.23andme.com/publications/for-
scientists/](https://www.23andme.com/publications/for-scientists/)

~~~
victor106
I would not mind opting in as long as the all the financial benefits don’t go
to the drug company and 23. The person sharing and/or the society should get a
piece of the pie

~~~
toomuchtodo
I don’t think it’s realistic to expect a few dollars for your contribution.

I’d be happy just knowing my 23andme profile is helping develop a drug that
otherwise wouldn’t have existed.

~~~
darpa_escapee
I don't see how it's unrealistic. People are paid to participate in studies
all of the time.

~~~
a_bonobo
I think a large part why 23andMe is so cheap (<$100) is that the worth of your
data is planned in, but I haven't seen anything confirming that.

~~~
darpa_escapee
I'm almost certain similar services exist around the same price point, which
don't apply the SaaS model of privacy to user data.

------
yosefzeev
All info, it seems, is up for grabs. Pay a company, they might sell you later
with apparently no repercussions.

~~~
corndoge
Yeah, whatever, hope they cure cancer with my saliva sample. More power to em.
I signed the ToS.

~~~
RhodesianHunter
Not only that, but when you sign up you're asked to opt in to allowing your
data to be used for research.

~~~
sbarre
They've also proactively reached out every time there is a chance that you may
want to re-think your opt-in due to new partnerships, policy changes, etc..

So I think they are holding up their end of the responsibility, and it's up to
the user to do their part to maintain informed consent.

------
mnl
I've always wondered about this kind of companies what's really stopping them
from giving access to your data to your employer, your health insurance
provider or any law enforcement/state organization. Of course any of those
things would be illegal, but that hasn't stopped people before. I can't think
of any data about you more sensitive than this.

~~~
darpa_escapee
What's to stop a special interest group from buying the data to build a
catalog of undesirables?

------
srcmap
If insurance are to pay $ for the data, is there way to limit such usage? Any
Legal way? When someone sign up for service with 23, is there any causes from
23 on what ever document one sign to limit insurance companies from accessing
the data?

------
dd36
You give them a fake name and birth date when you sign up to stay relatively
anonymous.

~~~
curiousgal
All it takes is a couple of relatives of yours to sign up using correct
information.

~~~
barking
That guy in California who got arrested recently for all those murders from
decades back was detected because a distant relative signed up to one of these
services.

~~~
ianhawes
While he was apprehended through familial DNA, it's important to note that it
was through a website that allows uploading of DNA samples, as opposed to
23andMe which requires a live saliva sample.

------
leemailll
I think this is the only thing GSK interested in investing.

