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Comment by tgv | Hacker News Reader

Sounds like dystopia is nudging closer. But who gives their DNA to a company?

People that want to know very, very useful information about themselves.

I very much doubt the usefulness of the information you get from 23andme. I would say it's useful with a grain of salt when it comes to clinical accuracy, maybe it would enable someone to actually go to the doctor and get properly and accurately tested. But on the other hand, it can also enforce a false sense of security when the tests are clean. 'FDA approved' does not actually mean 'clinically useful'[1].

From the ancestry standpoint, I think it's only useful for a very limited set of individuals/scenarios. In my case, I'm 90% Eastern European which is... kind of basic considering I know where I was born. Yeah, I share a lot of my DNA with all the people who were born in roughly the same geographic area. Big fucking surprise?

I never used 23andme and not planning to (the example is from a close friend of mine who did). I think the privacy concerns far outweigh the benefits.

But I am interested in genetic testing so if anyone has any pointers for a privacy conscious, not-for-profit (maybe in academia?), non-Law Enforcement friendly entity and preferably does it anonymously, please let me know.

[1]: "Why You Should Be Careful About 23andMe’s Health Test" - https://archive.ph/lpaUU

The entire new world is very mixed. Ancestry tests are useful for people from North and South America, Southern Europe, India, Australia and New Zealand etc. those are a massive number of scenarios.

There’s a lot of health information that’s useful. Propensity to alcohol dependency, propensity for fat retention, propensity for diabetes and high blood pressure etc. You can also download your SNPs and use that information on other sites that give you a lot more, less verified information.

> Ancestry tests are useful for people from North and South America, Southern Europe, India, Australia and New Zealand

Not really. And they're inaccurate. Did they even publish their baselines?

> Propensity to alcohol dependency, propensity for fat retention, propensity for diabetes and high blood pressure

These should be between you and your GP. And I can tell you that you have a propensity to many addictions, just by assuming you're human. Don't test them. Don't rely on 23andme to validate "No propensity for gambling addication? Casinos, here I come!"

Very very useful information like "Our arbitrary data model that isn't exactly based on science says you're like 4% eastern european"

Fodder for those who claim they're 1/17 Cherokee.

They were doing important Parkinson's research maybe 10 years ago. I sent in my dad's sample and mine. No idea what they got from my dad (it was a voluntary thing that didn't give you account access, just participating in their research).

I didn't have any of the known genetic markers for Parkinson's at the time and requested they destory my data and sample.

there are a lot of really valid use cases for genetic testing but to address your point you (these customers, etc) really should be aware of the risk and privacy issues that may occur if that data was compromised.

> But who gives their DNA to a company?

It is amusing to me that this idea was being celebrated here just a few days ago [1].

[1] https://news.ycombinator.com/item?id=37744350

I'm sure the people celebrating it in that thread still stand by their opinion. I don't see how this changes anything.

I did and it was worth it even if my DNA is stolen. I've reconnected with many lost and unknown relatives.

Really? I think if I got an out of the blue email or other contact from someone saying "hey, 23andme says we're related" I would ignore it.

Unfortunately, a few of the people I share some of my DNA with.

have you heard of clayton bigsby?

Based Clayton Bigsby enjoyer.

People give their DNA to anyone who happens to be in their presence, or nearby, or come to a place you've been a few days later... You're shedding your DNA all the time.

That's a bit different than giving the DNA + cost of sequencing + full identifying info, all signed sealed and delivered, wrapped up in a bow with fully authorized permission to monetize for whatever purpose and share with whomever asks. If someone else is going to the trouble of finding my location, stealing a sample, getting it sequenced, and correlating the data, then I suppose they earned the database record the hard way, didn't they!

I feel this is a straw man. The risk profile posed by this leak is not the same as someone going around and collecting people's DNA off the street. The leaked database is a highly concentrated artifact, complete with likely-correct PII across a million people.

If people were regularly surreptitiously collecting DNA samples from "the wild" at similar scale, this would be a different conversation.

How much of that shedded DNA is being sequenced and catalogued in an internationally available online database?

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