[throwyawaaaa]

I work in genomics. My lab, many of my friends and acquaintances work in genomics or had to dabble with it for at least one of their projects. You would think we would all be fascinated by this stuff, getting to know your own DNA and everything. Yet I don't know a single person who would even consider using 23andMe's service.

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.

[emilburzo]

Allow me to offer a different perspective: I've used 23andme and it was one of the best decisions ever.

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.

[short_sells_poo]

That's a very good and level headed response to the parent. I agree with both perspectives. I think the crucial point is that you seem to have thought through the implications of deciding for or against using 23andme and after weighing the outcomes, you made an educated decision. Perhaps the decision was right (fingers crossed), maybe it was wrong, but the important point is that you thought about it.

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.

[NicoJuicy]

Since you are from Europe, shouldn't you be able to use GDPR on them?

[emilburzo]

Good idea, I hadn't thought of that.

Looks like they even have a nice page about it: https://www.23andme.com/gdpr/

[alfonsodev]

What sites did you use ? I used promethease site, but it was way too much information, and the filters felt complicated. Is there any other site that makes a better job filtering what is more important for you specifically ? Any recommendation ?

[emilburzo]

Here's a list of sites I've tried: https://www.reddit.com/r/23andme/comments/9l50k5/a_list_of_t...

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 :(]

[jobigoud]

> explained my above average cold tolerance ... I knew what to look for...

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?

[emilburzo]

I don't follow / maybe what I meant got lost in language.

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.

[DoreenMichele]

I have always been "sickly." Getting my genetic disorder properly identified was amazingly empowering and life changing in the most positive way.

[qball]

>Doesn't mean it won't be misused.

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.

[marchenko]

Thus comment and the parent are spot-on. The main protection against the adversarial use of genetic databin the US, GINA, is currently facing several challenges, mostly through the backdoor of opt-in employee wellness plans.

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.

[Uberphallus]

What a group of friends has been doing is, they ordered +10 kits over a year shipped to the very same person, then they each of them spit and register the kit with a disposable email address. The info about the receiver is watered down (if he did one himself, which he didn't) and the rest remain reasonably anonymous as long as they keep using Tor/VPNs.

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.

[Casseres]

Keeping your name and location anonymous doesn't matter. Once a company obtains a family member's DNA information through any other source, they will see a familial correlation, use other records to realize that family member has a brother/sister/etc and might now attribute that once-anonymous DNA record to you.

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.

[ig1]

If insurance companies wanted genetic testing data they wouldn't bother trying to do a messy data join with a third-party database, they'd just make it a requirement to provide a swab/saliva sample for testing when you signed up.

[salawat]

Boiled frog fallacy. They won't be able to get away with it now, but as time goes on they'll start adding it as a voluntary option for a small discount, eventually ceasing to offer service otherwise.

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.

[refurb]

As someone with a biochemistry background and a decent understanding of genomics I couldn’t agree more about not putting faith in the results.

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.

[baddox]

I paid for 23andMe. I did it mostly out of curiosity, to see if there was anything in their genealogy report that would surprise me (there wasn't). I was also interested in their medical risk reports, although I admit to having very little knowledge about how reliable or extensive those reports are.

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.

[topmonk]

The thing is, though, if the world becomes as much of a dystopia where the people who have their data on file at 23andme causes some sort of major havoc in their lives, why do you think it will stop there?

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.

[mikekchar]

The thing about a dystopia is that you can't control everybody or else you will incite a revolution. There is actually a balance that you need to maintain. Privilege is one of the main ways of maintaining slavery. For example, if you are 1 person and you want to control 10 slaves, it is not really possible -- they will gang up on you. However, if you make one of the 10 slaves the "head slave", then they have an incentive to maintain the status quo. If you then make it clear to the other slaves that they can be upgraded to "head slave" as you expand your slave empire, then they will also have incentive to maintain the status quo. Your goal as a slave keeper is simply to make the reward/liability comparison work out ever so slightly on the reward side. You want people thinking, "Well, if I work hard, then I might be made head slave. And my slavery is not so bad. If I try to run away or rebel, then I might be beaten -- and I don't even know if I can survive if I run away".

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).

[alexlikeits1999]

You don't have to provide them with your real name.

Also, I work in genomics and am a 23andme customer/product (although I was the latter before I the former became true).

[minipci1321]

I travel a fair bit and stay at the hotels here and there. I keep wondering, how long before hotels start sampling your personal belongings (toothbrush, comb etc) for gen data. Maybe that already happening? From there, how long before full lists of these data {genetic sample; full name and other credentials} are on sale on some special market?

Call me paranoid... is that sort of activity even regulated? Isn't this like a public image for photography?

[Lio]

Well, if we're being paranoid they probably don't need to touch your personal belongings. They just have to have a look at the bed sheets after you've slept on them.

...or to get your DNA they can work it out from the "deposited" DNA of your close relatives. There will be no hiding! :P

[minipci1321]

Sure! What I specifically meant (sorry, was unclear) is, how long before such activity becomes lucrative enough for hotels to routinely perform? ("hotels" == entities in a completely unrelated lines of business) I.e., there is stable market for these data and the procedure isn't very costly in recurring expenses (no costly extraction from "noisy" support).

Would that be legal by today's laws?

[simplyinfinity]

What is stopping the labs that do my company mandated health checks to sell my DNA?

What is stopping the government from collecting DNA at birth? yes.. it's not a law.. yet.

[toothbrush9]

if you were born in the state of california after 1966 then the government did collect and is retaining your dna (newborn blood specimen) and it is a law.. already

[smougel]

> With this company you end up $100 (or whatever) short and you surrender your data for it to be sold to ... .... insurance companies and whatnot.

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.

[noahth]

Some great things about companies that you can always count on:

- 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

[xiphias2]

- They never ever get hacked, and even if they do, the insurance compamy would feel immoral to buy the hacked data dump

[toyg]

- they never fail and liquidate assets in a hurry

[waterhouse]

Also, does anything prevent them from selling your data to a middleman who then sells it to an insurance company?

[salawat]

Then why do they hold onto it instead of destroying any record after transmission?

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.

[Waterluvian]

Curious. Is that binding forever? Are they not allowed to ever change that and then retroactively give out data?

[pupppet]

This is a silly argument. Do you expect to get a free X-Ray because they're just showing you your own bones?