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".
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.
Genome is still pretty theoretical, except getting caught for committing crimes.
It is? I mean then why are we bothering to protect anything, this shit is all super available for any given person.
https://www.pnas.org/doi/10.1073/pnas.0904891106
Konerding's 12th law, amended: "There is no bit of pseudonymized data which cannot be de-anonymized by a sufficiently motivated MIT grad student" (not entirely joking; see https://archive.nytimes.com/bits.blogs.nytimes.com/2015/01/2...)
Would a bunch of your cells be sufficient at some point in the near future? (I know progress is being made to turn any cell into a reproductive cell, but that's still not exactly the same thing, but it's on that exact path)
You still might not mind a bunch of your clones though, so I don't think that's much of an argument.
I think part of my point is that DNA, by its nature, simply cannot remain confidential, and that thinking we can keep it that way is just going to lead to inevitable disappointment.
Second, whether DNA can or cannot remain confidential is yet to be seen, but feasibility is certainly orthogonal to whether it ought to be, which is the point at hand.
Third, whether you believe it's a breach of privacy to leak part of your relatives' DNA is besides the point. It's their decision to make, since it's their personal data and deemed confidential under most privacy frameworks, and therefore a breach.
To your second point: we already know DNA can't remain confidential (there is no practical mechanism by which even a wealthy person could avoid a sufficiently motivated adversary who wanted to expose their DNA). That's just a fact, we should adjust our understanding based on that fact.
Most important: sharing my genomic information with the world is not a breach of any privacy framework I'm aware of and subject to (US laws). Do you have a specific framework or country in mind?
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.
The point is that while you can use DNA to identify people in most cases, sufficiently motivated adversaries have more effective, cheaper, lower-technology approaches that they will use first.
Me shouting my sensitive private details in a crowded bar is entirely different from putting them on my webpage. There's even a difference between writing them down on a napkin or shouting them out.
I guess it's representative of the demographics here. Nobody capable of conducting themselves honestly.
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)
There's the old saying of knowledge being power. If you want this information about people being spread, then you're advocating having power over these people over that information.
It takes very little imagination to see how humans would misuse this data.
I'm disgusting for "people having power over other people", you're disgusting for the graveyard of dead people due to the status quo system.
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.
As for actuaries, in the US, the GINA law prevents health insurance companies from using this data. I think legal protection is much more important than attempting to hide my DNA.
I agree, if you can't justify trust with reason then it's hard to trust your argument that relies on trust. Trust can be broken, and your stance doesn't address that concern.
With your own "trust can be broken", you could conclude that you should distrust "with reason" (hey, it was broken) — basically, flipping it is an equally sound stance.
As a rule, I trust people, keep private stuff not easily aggregated (eg. I might talk some stuff over lunch, but will not email it to the person so they have it on record), and I am quick to distrust people once they fail me. Legal protections do matter, because they discourage misuse of unintended data sharing.
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.
About insurance companies, they're legally forbidden to use such data.
Great training set to check the results of other factors, then use those to infer.
Moreover "legally forbidden" means jack faeces unless you can point to people who had convictions recorded and went to jail. Otherwise we're merely discussing business conditions & expenses.
We have /that/.
Theft is illegal and you lock your house, and that regulation is a serious one. The idea we have nothing but regulation is absurd in the extreme.
This is completely false. Any two random humans have more than 99% overlap by virtue of being the same species. It's even higher for brothers. We also share around 90% DNA with cats, dogs and elephants.
https://www.amacad.org/publication/unequal-nature-geneticist...
> I'm not too worried about it because it's never a 100% overlap.
This doesn't make sense. If they were equal, you'd be the same person except for environmental differences. Many applications don't need equal DNAs. E.g.
https://youtube.com/watch?v=KT18KJouHWg
> About insurance companies, they're legally forbidden to use such data.
This is a very weak argument. There's a long history of companies doing illegal things, and even if it's illegal today it doesn't mean it'll be illegal tomorrow.
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.
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?
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.
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.
For me, phone numbers have had reduced importance over the last couple of years. Most of my communication with other people are over various messaging apps.
Using a phone _number_ to authenticate yourself against the government seems completely bizarre to me.
I understand that leakage of phone numbers become a problem if you use them for those kinds of things. But honestly, using them for authentication seems crazy from a security point of view.
On balance, was the utility worth the cost (of a breach)? Probably not, because I found no major actionable issues. But if I did find severe biomarkers, it would have been worth it. So I do still think I made the right choice.
Q: Is it a HN thing to be (obsessively?) interested in health and longevity?
Dying is a natural process. Sorry.
> Dying is a natural process. Sorry.
Avoiding dying, as best one can, is also a natural behaviour.
Source?
Natural selection is about passing on our genes which looks like: reproduce, raise your offspring ... <roll credits>
As a species, we're excellent at working around or ignoring what's "natural".
I'm befuddled that anyone thinks Sam Altman is the least bit trustworthy after WorldCoin.
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.
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.
Quenching someone's curiosity about where their ancestors are from? Do we even know how accurate it is at doing that?
Once I enabled the social graph thing I was immediately hounded by distant relatives who I assume want to chop me up for parts.
> Do we even know how accurate it is at doing that?
The police have closed a few cold murder cases based on adjacency (once Parabon got their hands on samples), so it must be pretty accurate.
Anecdotally, my profile told a radically different story about our ancestry than my family's vague lore led me to believe. 23andMe's data made way more sense.
Over time it became clear that 23andMe's data set had limited predictive ability for health for a number of technical reasons (previously, dahinds, one of their statistical geneticists, has defended the quality of their predictions on HN, you can search for his comments. I suspect he can no longer comment on HN because of 23&Me's security debacle).
However, around that same time, 23&Me's dataset turned out to be excellent for ancestry analysis. It's generally considered fairly accurate (not just 23&Me- the entire process of ancestry through snp genotyping workings really well).
I never did 23&Me but my dad did- and he learned he has children all around the US (half brothers and sisters of mine) from some samples he provided some 45+ years ago. Both my dad and those people gained value from making that connection. It's interesting because my dad had already done most of the paper research (including going to SLC to visit the Mormon archives) to identify our obvious ancestors, and these relatives would never have shown up.
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.
That doesn't stop my family from doing so, but I sure as hell will never.
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.
Maybe they accept the possibility that they die one day?
Is this actually happening, or is that just what the stories say?
The only missing piece is a way to scan your DNA as part of a login form.
So if 23andMe leaked a fake name with your DNA, it's out there in the hands of advertisers/scammers/governments/etc. From now on, anyone who gets access to your DNA will be able to build up data on you, and all it will take is a single leak/sale from a credible source to make it accurate.
(...but in truth, I have no idea what "DNA data" looks like, or if it's even possible to use it for targeting...)
If someone finds my DNA without my identity, they're no further ahead. If they do have my DNA and my identity, well the 23andme part gives no additional information.
Maybe some day this will be a big concern, but by then we'll have much bigger things to worry about.
Maybe I want to steal a kidney, or a child that could reasonably pass as my own?
There are already literally entire databases of millions of peoples DNA freely available for scientific research.
So far, the only real use-case for doing this is people trying to identify criminals from just DNA.
However, it's a significant risk for other types of insurance including life, disability, and long term care.
It's more than likely that they would use genetic data to deny insurance, and then settle the cases in court if they happen to get sued, which statistically is probably a rare occurrence.
The paranoia about insurance and genetics is that they simply refuse to do business with high risk customers.
Unless this is an online joke I don't get, I think you mean "scapegoat".
"The concept comes from an ancient Jewish ritual described in the Bible, specifically in Leviticus 16. During the Day of Atonement (Yom Kippur), two goats were chosen: one to be sacrificed and the other to be sent into the wilderness, symbolically carrying away the sins of the community. This second goat was called the "Azazel" or the "scapegoat".
Over time, the term "scapegoat" evolved to have a more general meaning in English. It came to refer to a person or group that is unjustly blamed for the problems or misfortunes of others, reflecting the original ritual in which the goat was symbolically burdened with the sins of others before being sent away. "