Not so much for the Ancestry part, which was also interesting and explained my above-average cold tolerance, but for the health stuff.
Granted, being from Europe they don't directly offer health services, but you can get the raw data and upload it to various sites for interpretation -- ranging from really accessible to follow-the-rabbit-hole style.
I've accepted from the start that everything is uncertain, or just a possibility, but it was still very useful, because I knew what to look for and thus able to validate easily if true or not.
Some things that were in the reports I already knew, some I suspected, some I had no idea and would have never guessed -- this last group had the most impact.
Some examples: allergies, motion sickness, needing above average amounts of vitamin C.
All very easy to test, but with an amazing quality of life improvement gained as a result of just changing some simple things.
So yes, a US company has my personal DNA data, maybe they will take care of my privacy, maybe not, but the quality of life gains were worth it, for me.
What other alternative would people like me have, from countries where there is no access to good doctors, of finding stuff like that, had there not been 23andme? Especially since I didn't even know what I was looking for.
I took parent's post less as a blanket warning against doing DNA tests, and more of a caution to consider the implications.
I think there is value in services like 23andme, and even if there are risks that the information will be misused, the risks are worth it. I don't mean the risks associated with case of a specific person, but the research and services associated with DNA sequencing in general.
Maybe 23andme is not the way forward, and eventually some other (better) services will arise, but we (humanity) are in something of an uncharted territory here, so there is need for a bit of trial and error. Yes there be dragons, and occasionally we'll have our eyebrows singed, but advances in medicine and biology (as your case highlights) are vast.
Looks like they even have a nice page about it: https://www.23andme.com/gdpr/
They're all pretty interesting, but the most impactul (read: actionable reports), for me, was: https://www.xcode.life/
[No affiliation, I didn't even get a discount :(]
Sorry but this makes it sound like horoscope reading.
If you can't rely on it to make predictions and only use it to confirm preexisting ideas about yourself how is it better than pseudoscience?
To rephrase:
- there were some things in the report that I already knew, it was nice to see confirmation -> points++
- there were some things in the report that I suspected, but wasn't sure about, also nice to see it written black-on-white -> points++
- there were some things in the report which I had no clue about, but were easy to test if they are true or not (they were) -> points++++++++++++++
And to keep it fair: there were also things which didn't really apply at all.
But my point was, because I knew what to observe better, it was easy to keep the relevant stuff and ignore the rest.
To add to this, though genetic information may be protected against defining a pre-existing medical condition for insurance purposes today, there's zero guarantee that that law protecting you will still exist in the future, or extend to your descendants (which can be assumed to carry roughly half of your genetic material).
Once you've given this data away without any guarantee that it'll be destroyed at the end (if such a thing is even possible), you can't take it back, and you could potentially be screwing over those who didn't make that choice.
Additionally, while the SNP- format generic data provided by 23andMe is of marginal medical use to the average consumer, it is very valuable to insurance companies and others constructing population-level actuarial models, where a very tiny increased probability of developing a condition is enough to justify increased rates.
And finally, as these relative-discovery stories suggest, there really is no such thing as anonymized genetic data above a panel of a few SNPs. This data is part of the inherence class of factors in multifactor authentication, and can even be derived from pooled anonymized data by a motivated party.
Moreover, these tests are forbidden in France, so these shipments are being sent to Monaco/Italy (1 hour drive from here), adding extra levels of law/tracking indirection.
That's the scary thing about these companies: you might never even use the service, but once a relative does, the company now has information about you.
Auto insurance is already well into the process of doing the same thing with regard to diagnostics data being transmitted back home from Snapshot devices/driver's aids.
From ancestory to health risks there is so much BS out there. Some crappy paper correlates a SNP with a health risk and people freak out.
People should take results outside of heavily validated studies with a grain of salt.
The thing is, I actually agree with all your concerns about privacy, but I guess I just disagree about the magnitude of the concerns. Of course there are risks of being targeted for ads, or treated differently by health insurance providers. I can't really justify my stance, but I guess I'm just less worried about the possible downside than I was interested about the possible upside.
Either the world will turn into a dystopia or it won't. If it does, not giving out your DNA sequencing information is, in all likelihood, not going to allow you to avoid getting caught up in it.
No matter what dystopian world you live in, you will always be given the illusions that life is better as it is than it would be if you were free. They aren't going to throw you to the wolves completely. Instead, they will always present you with a dilemma: "As long as you only do X, you'll be fine, so there is no need to fight against it". In terms of privacy, there always has to be the question, "Why do you need so much privacy anyway?" If you answer that question, then you will break your balance (see recent Facebook "scandals" -- nothing changed except the general understanding of why people wanted privacy).
The advice to avoid problems is a pragmatic one. "If you do X, you'll be fine" is funny because people will say that and then forget to do X. "Well, I'm sure I'll be fine anyway". If you are careful to do X, then you can avoid many of the downsides. You can use that time to break free from your slavery. Umm... Or not... (usually people choose the "or not" option).
Also, I work in genomics and am a 23andme customer/product (although I was the latter before I the former became true).
Call me paranoid... is that sort of activity even regulated? Isn't this like a public image for photography?
...or to get your DNA they can work it out from the "deposited" DNA of your close relatives. There will be no hiding! :P
Would that be legal by today's laws?
What is stopping the government from collecting DNA at birth? yes.. it's not a law.. yet.
False ! Source : https://www.23andme.com/about/privacy/
We will not provide any person’s data (genetic or non-genetic) to an insurance company or employer.
- They never change their terms of service
- The demand for constant growth never causes them to reconsider ethically dubious revenue streams
- They never get acquired
Because it's an asset, and they are there to make money. Not because they are doing it out of the goodness of their own heart.
You can't take back information.
To me this is all an elaborate scam. Why on earth would you pay them to give them your data?! At least with Google et al. we know that if you are not paying for the product, you are the product. With this company you end up $100 (or whatever) short and you surrender your data for it to be sold to advertisers, insurance companies and whatnot. And not just stupid things like your Amazon shopping history or your latest Tinder conversations (which are in themselves pretty damn intimate if you ask me) but the most intimate thing of all. I actually disagree with behavioral genetics/sociobiology fundamentalists who think there's little more to the self than one's DNA, but just because one cannot make much out of it doesn't mean it can't be misused. If Gattaca implications sound scary, imagine what would happen if the decision makers had no idea what they were doing in the first place.
Because that's where we are at this point: just because X variant is associated with Y% more incidence of whatever disease does not mean extra care should be taken regarding risk factors, insurance policies, etc. The correlations are interesting when combined with other data but most of the time we have no idea what's going on and what it is that makes variant X cause disease Y, if it does at all. Doesn't mean it won't be misused.
Please people, don't pay to get your data swindled out of you. Stop with this weird fascination with your DNA, and stop trying to look for an answer when are barely asking the questions.