[d2049]

I would have presumed that security-minded people, which includes those who work in tech, would not so easily give away their genome, and that most of 23andMe's customers are a slice of the general population. But then I read about things like WorldCoin and that people who go to startup parties jump at the chance to give away scans of their retinas and I'm befuddled. Why would anyone willingly do that?

[dekhn]

I'm familiar with security (I keep a copy of Applied Cryptography on my shelf for "fun reading") and tech, here's a copy of my whole genome: https://my.pgp-hms.org/profile/hu80855C Note it's a full human genome, far more data than a 23&Me report. You can download the data yourself and try to find risk factors (at the time, the genetic counsellors were surprised to find that I had no credible genetic risk factors).

Please let me know in technical terms, combined with rational argument, why what I did was unwise. Presume I already know all the common arguments, evaluated them using my background knowledge (which includes a PhD in biology, extensive experience in human genome analysis, and years of launching products in tech).

I've been asking people to come up with coherent arguments for genome secrecy (given the technical knowledge we have of privacy, both in tech and medicine) and nobody has managed to come up with anything that I hadn't heard before, typically variations on "well, gattaca, and maybe something else we can't predict, or insurance, or something something".

[sedatk]

1) You can be subject to discrimination based on your ethnicity, race, or health related factors. That's especially a problem when the data leaks at scale as in 23andme's case because that motivates the development of easy-to-search databases sold in hacking forums. The data you presented here would be harder to find, but not the case with mass leaks.

2) It's a risk for anything that's DNA-based. For example, your data can be used to create false evidence for crimes irrelevant to you. You don't even need to be a target for that. You can just be an entry in a list of available DNA profiles. I'm not sure how much DNA can be manufactured based on full genome data, but with CRISPR and everything I don't think we're too far away either. You can even experience that accidentally because the data is out there and mistakes happen.

3) You can't be famous. If you're famous, you'd be target of endless torrent of news based on your DNA bits. You'd be stigmatized left and right.

4) You can't change your DNA, so when it's leaked, you can't mitigate the future risks that doesn't exist today. For example, DNA-based biometrics, or genome simulation to a point where they can create an accurate lookalike of you. They're not risks today, doesn't mean they're not tomorrow.

There are also additional risks involved based on the country you're living in. So, you might be living in a country that protects your rights and privacy, but it's not the case with the others.

[mtremsal]

For one thing, this leaks a portion of the genome of your relatives, which is a clear breach of their privacy. Whether you personally deem it sensitive or not, genetic data is meant to remain confidential.

[harry8]

> genetic counsellors were surprised to find that I had no credible genetic risk factors

So let's assume you committed to publishing your genome in advance regardless of result. Sounds like you spun the barrel and dry snapped to demonstrate that russian roulette is safe for everybody.

Tell us about how differing views on this to yours would influence opinion about your products you've launched in tech given your extensive experience in human genome analysis. Not at all?

This really may not be a case of being unable to understand something one's paycheck depends on not understanding at all but we can't know that yet.

[hot_gril]

One non-theoretical risk is that you or a relative leaves DNA on the scene of a crime you didn't commit (or?), and this makes you a suspect. This is also assuming a real identity is tied to the DNA.

[downWidOutaFite]

That's not the same risk because 23andme also has name, address, email.

One risk if you have PII+genome is that a technically sophisticated entity can determine if you've physically been in a location. Also with an extensive PII+genome database they could find your family, for example for blackmail purposes.

Another risk is that a health insurance provider could deny you based on potential health issues they find in your genome.

[yborg]

>well, gattaca, and maybe something else we can't predict, or insurance, or something something

Sure, if you don't believe in any of the potential negative scenarios, anything goes. You could also post your full name, SSN, DOB, address, etc. here if you are secure in the knowledge that no harm could ever come of it.

[drcode]

Fully agree with you here. I can understand why people argue "We must do everything possible that no human being ever finds out anything medical-related about another human being, ever"

But that is a value judgement, and I believe it is one that comes at a great cost to society- I wouldn't be surprised if >50% of the cost of medical care is directly or indirectly due to this attitude, and that medical progress has been slowed immensely for the same reason.

If we could make medical data more open, it would greatly benefit the vast majority of people. OF COURSE it is true that some smaller number of other people/patients are helped by the existing medical secrecy system. I fully admit this is a trade-off, where we have to decide what values are more important.

(source: Am medical doctor)

[zlg_codes]

Why do you think people are entitled to have genome data on you? The morality is flipped. Privacy is recognized as a core, natural right. Others have to prove their onus for wanting your biological data. Trusting others is a moral and character weakness, because you have no guarantees as to how that data will be used. Or more specifically, what new ways to analyze and take advantage of that data will become.

I think actuaries will care an awful lot about this data and could use it to negatively influence your risk factor, and thus insurance premiums.

[BobaFloutist]

I'm gonna start making clones of you.

[necovek]

Generally, being pseudo-anonymous is what allows open and free discussion (but lots of vitriol too).

While genetic information is not yet understood well enough by masses to be abused in stereotyping and rejecting and — indeed — "cancelling", there is a huge potential to do so. This especially holds true for gender, racial, national differentiation, genetic disease potential and health profiling — all accessible through a full genome (even if some of the indicators are not with 100% confidence). Lots of this can also be used to start linking genome data to an actual person (helped with data from other contexts), which is where it starts to become risky according to known risk profiles.

Unsurprisingly, someone who is likely a white male (I could have checked using your genome too, but loading up your profile above confirms that) with "no credible genetic risk factors" is a lot less concerned about opening up their genome to the public: you are unlikely to get discriminated against. With that said, even you can get potentially ignored for your privilege: even I just engaged in that — somewhat discounting a part of your experience/claim because you are a white male. Part of that is also education: your extensive experience in the field allows you to make an educated choice. Many can't attain that much knowledge before they decide whether to share their genome or not.

This opens up the question similar to that entire face recognition fiasco — how will unprivileged be affected by the privileged being mostly used to train the models on and do research on?

So the question is how do we ensure enough anonymity to make everyone happy to contribute to the world knowledge, but reduce chances of linking data back to actual people? I know nebula.org is doing something of the sort (though mostly just guaranteeing that they will remove the data at your request, and not share it without your permission), but we could have one genome produce a bunch of part-genomes, still allowing causation/correlation research, but none of them having the full picture.

That would disable some of the groundwork research (is there a correlation/causation only visible in the full genome or larger part of it?), so it's a tricky balance to find.

And finally, I always like to make this choice a bit personal: how would you feel about your child being linked to a criminal case due to your genome being publicly available?

[xvector]

I am a security engineer. When I signed up for 23andme, I assumed with certainty that it would be hacked and all data leaked at some point. I balanced that with the value of knowing potentially important health/genetic bio markers.

In the end, I valued knowing these bio markers above the privacy of my genome. The former is actionable and I can use it to optimize my health and longevity; the latter is of vague value and not terribly exploitable outside of edge-case threat models.

[smarkov]

Exactly my thoughts.

I'd be more upset if a combination of my name and email/phone number got leaked than if my DNA was made available public.

[c7b]

In retrospect, how do you so far value the utility of the data you got? Did you take any actions based on them, do you think you will be doing so in the future?

[logifail]

> I can use it to optimize my health and longevity

Q: Is it a HN thing to be (obsessively?) interested in health and longevity?

Dying is a natural process. Sorry.

[p_j_w]

>But then I read about things like WorldCoin and that people who go to startup parties jump at the chance to give away scans of their retinas and I'm befuddled.

I'm befuddled that anyone thinks Sam Altman is the least bit trustworthy after WorldCoin.

[kelthan]

There is a difference between genomic data and biometric data: biometric data has a known potential exploit vectors. So, with a picture of your retina, a sophisticated adversary could potentially reproduce your retina to allow access to some secure facility.

Genomic data doesn't have the same risk factors--at least at the moment. I think that the point many are trying to make here is that there may be risk vectors available at some point in the future that aren't known now. A couple of theoretical examples:

* You had to give a blood sample rather than other biometric data like a retina scan.

* Spoofing DNA evidence. That would be very/prohibitively expensive/difficult at the moment, but I suppose could become as easy as 3d printing at some point in the future.

[mrweasel]

The same people believed crypto-currency, infinite growth, social media and many other things. At least 23andMe provided actual value, to some at least.

What I find strange is that 23andMe did not automatically delete data after 30 days, or at the very least took it offline, only to be available on request. Notify people that their results are available and inform them that the data will be available for 30 days after the first download. This is potentially really sensitive data and based on 23andMe's response, they seem to be aware of that fact. So why would they keep the data around? That seem fairly irresponsible and potentially dangerous to the company.

[geoelectric]

Their service is selling you a dashboard over your genetic data that’s continually updated for new gene correlation studies and ancestry matches. It’s not really the one and done “Promethease” style analysis service you’re thinking of.

[vik0]

What actual value did 23andMe and similar services offer in the first place?

Quenching someone's curiosity about where their ancestors are from? Do we even know how accurate it is at doing that?

[drdaeman]

They will NOT delete your data even if you request a full account deletion, so surely they aren't interested in voluntarily deleting it.

It's all in the fine print. The labs will keep the genetic information as well as at least your DOB and sex for at least 10 years (CLIA requirements), and 23andMe will keep your identifying information (such as your email address) and account deletion request ID for some undefined period of time. Yes, this will remove some links (and birthday paradox works in user's favor), but this is certainly not a full and complete removal.

[latentcall]

I was 24 in 2015 and not in tech or as security minded as I am now when I received the test as a Christmas present. Obviously now I wouldn’t have dared do it, but it’s too late. Lacked the foresight at the time.

[PH95VuimJjqBqy]

It will be a cold day in hell before I ever submit to dna analysis of this nature.

That doesn't stop my family from doing so, but I sure as hell will never.

[weebull]

So they've basically done it for you. Primary sensitive information is about is predisposition to hereditary disease. That's the same for you and your siblings.

[FireBeyond]

> But then I read about things like WorldCoin and that people who go to startup parties jump at the chance to give away scans of their retinas

Well, in the case of WorldCoin, I think there's still some pretty significant questions of why they made Africa a prominent launch market (well, there are some reasons), but in some places they repeatedly increased incentives until they were offering people there up to a month's income to give their scans. That might not be a lot of money to a big startup, but is telling that they had to offer that much to get some people to "opt" in.

[Dma54rhs]

Poor and desperate people don't have the luxury thinking of these first world privacy issues. There a reasin Altman and launched it where they did.

[barbazoo]

That explains the WorldCoin but not 23andme, people voluntarily paid for that so they couldn't have been that poor.

[hot_gril]

What's the implication here, that tech people should know better? I just don't care a ton about my privacy. At least that makes me not a hypocrite for working at a company that profits from user data (like many tech ones do).

[rand1239]

> Why would anyone willingly do that?

Maybe they accept the possibility that they die one day?

[akira2501]

> I read about things like WorldCoin and that people who go to startup parties jump at the chance to give away scans of their retinas

Is this actually happening, or is that just what the stories say?

[switchbak]

You didn't need to supply accurate information, this isn't a bank here with any validation of your identity.

[bogwog]

You can at least change your name. You can't change your DNA, so when companies start selling that data it will be easy to detect when you give out fake information.

The only missing piece is a way to scan your DNA as part of a login form.

[basch]

Or the reality is, if someone wants your dna they will follow you around and grab a coffee cup.

[mrweasel]

Yes, yours specifically, but what if I want like 200.000 people so I can find one that has a DNA profile similar to mine, who could serve as a escape-goat or victim?

Maybe I want to steal a kidney, or a child that could reasonably pass as my own?

[varispeed]

I know someone who is very security-minded, but also he was born to parents misplaced due to a war and they didn't know where they come from (their adoptive parents would only know a region, but not for sure). At the time it was an easy option to learn something about his heritage to him. His curiosity was satisfied.

[93po]

The long term premise of WorldCoin is to not store retina scans in any way, and scanning stations in the US already do not do so.

[itronitron]

'long term premise'