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Comment by xyst | Hacker News Reader

There is no "better outcome".

People who got bamboozled into paying for this junk service shouldn’t have their DNA data treated as some commodity that can be traded like a stock.

The sale of this data should be treated as PII and "transfers of ownership" should not be implied. The default for every user should be to delete the data upon sale of company and provide a way for users to opt in to the transfer.

Users should be incentivized and trust (if any at this point) needs to be rebuilt with this new company, not implied.

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I paid for a service that gave me useful insights into my ancestry and health profile, and it cost me less than 30 minutes with a teledoc and a basic blood test. I opted out of keeping my sample in storage and using the data for research at the time, and deleted my account and data a few months ago as a matter of general digital hygiene, but even if they didn't honor any of that, I don't see why I should be concerned about it being out there. The privacy concerns were quite obvious and oft-discussed several years ago when I sent my sample in, so I certainly didn't get "bamboozled". I'm sure there are many people who didn't consider that their data may not be private, but how many actually care about that?

The ones that are reliant on health insurance to not die and now can't have any because their genotype suggests they might be expensive?

The right solution to that continues to be outlawing genetic risk-based cost scaling. Doing anything else means that we're just deciding people get to live and die due to their genetics and we will systematically encourage that; it's eugenics with extra steps.

That means the only insurer who could afford the risk is the US government.

This is a feature not a bug.

https://www.eeoc.gov/statutes/genetic-information-nondiscrim...

It's pretty wild we don't have laws that cover this

It is the obvious eventual outcome in any system that is built as "If it isn't explicitly illegal, it's allowed". We will forever play loophole wackamole until we change our system such that doing bad things isn't allowed just because we haven't named a rule after you yet.

That's exactly why I never used it. Unfortunately I have family members who did so it doesn't matter that I avoided it.

That part has never sat right with me.

Grandpa sewed some oats before he got with your grandma? That's his business, not his relatives'.

It's hard to argue that a criminal's rights are being violated if he's found out through a DNA database, but the privacy ramifications overall of them are really unfortunate. The world is moving to a place where your biometrics are on the record, and the government can use them to hunt you down (see also, Global Entry, fingerprinting people who work with kids, Real ID, speed cameras, etc.).

I really don't like that we're being surveilled by default now. It's even creepier when there's now an administration in power that has no respect for prior norms and a long list of perceived enemies.

I don't like a lot of the things you mentioned, but I do like some of them.

I like that you have to be Live Scanned to be an EMT or work with children. You aren't forced to do those jobs and they do require a higher level of trust. The FBI opened its fingerprint database a century ago now, and it's been used for a lot of good and I'm sure some bad. But more good?

>> The world is moving to a place where your biometrics are on the record

I remember watching GATTACA and thinking how depressing it was in 1997. Its been less than 30 years and we're already here.

yeah I did bioinformatics for a living and I warned anyone I knew to not get this (or ancestry, etc.)

>The sale of this data should be treated as PII and "transfers of ownership" should not be implied.

Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.

The good news is:

>"Regeneron pledged to comply with 23andMe’s privacy policy, which allows customers to have their personal information deleted upon request."

There needs to me a massive campaign to convince every single customer to file a data deletion request.

Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.

This is important: don't assume that because you're paying for a service that your personal data isn't still being mined. It doesn't matter if you fairly, over or under pay for a service. There's nothing illegal or uncommon about that.

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