23andMe Is Sharing Genetic Data with Drug Giant | Hacker News Reader

23andMe Is Sharing Genetic Data with Drug Giant

scientificamerican.com

58 pointsdraenei32 comments

dupe?

previous discussion: https://news.ycombinator.com/item?id=17609906

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.

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.

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?

The language is quite neutral and explains pretty clearly what opting in means.

The research consent page is separated into about 6-7 paragraphs that explain the various ways it could be used, and what to consider.

It's not coersive in either direction.

I know this because I used to consent and after this announcement just went to remove my consent.

To 23andMe's credit, I did this because they sent me an email explaining this new relationship and reminding me I had consented to the previous setup but now should think about whether I still consented in light of the new partnership.

I felt it was all above board.

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/

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

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.

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

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.

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

Correct. Your fee just covers the genotyping on the Ilumina chip.

Disclaimer: Interviewed at 23andme about a decade ago.

>Language would not be neutral, something like 'Do you want to help stop this cancer?'

this more or less violates 100% of the informed consent laws which are the standard for all investigations using people's genetic information in a clinical trial.

even with peoples' consent, this is egregiously bad. there is an established ethical standard which 23andme has decided to throw into the faces of their customers.

One major caveat on that in the case of DNA. I would never sign away rights to my DNA data. However, my mother had no problems doing that, filled me in as a child, and now 23andMe has half of my genetic profile without my consent.

It reminds me of the friends of friends workaround that FB kept doing which made me delete my account.

Imagine a future where a government or company can get a report on a potential employee/insuree/contractor detailing their risk of cancer, or whether they have genes associated with higher educational attainment or criminal activity from a data broker because their brother or cousin thought it would be cool to see how much Neanderthal DNA they had.

If you just employ enough people it would be interestingly possible to see how much the Neanderthal DNA impacts work performance... ...i should never do corporate HR.

The Chinese government already uses facial recognition, DNA, and biometrics to corral muslim minorities and monitor them around the clock. If a traffic camera picks up someone outside their village, authorities are immediately notified so that they can be followed or arrested.

Source: https://theguardian.com/world/2018/jan/18/china-testing-faci...

I know most people in tech don't care too much about privacy nowadays, but if anyone wants to see some real world examples of how disastrous that mindset could be, they can just take a look at modern day China.

I honestly wouldn't be surprised if some anti-privacy bill got passed one of these days under the promise that it would allow the government to spy on all those evil minorities ruining the country to deport them faster, and turning the US into a surveillance state. That shit is scary.

It's far from perfect. The main issue is people have no idea what they're really consenting to. Leaving aside the vague wording, we don't even really understand what data is even possible to derive from DNA. Some researchers are generating photos of what people are going to look like as adults from DNA, others are correlating certain genes to personality traits, educational achievement and risk of criminal activity.

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

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

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

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.

I’m sympathetic to your pessimism, but in this case you specifically have to opt in to allowing your DNA information to be used for research. It’s part of the sign up process.

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.

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

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?

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

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

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.

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.

How do you pay?

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

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