Okay but like, I'm not planning on committing a crime and nothing I do now is considered criminal, but let's play out the worst case scenario and a fascist government comes to power and something I do now is considered criminal and they can place me doing it with this DNA that as the author describes can narrow down if it was me pretty easily.
You can tell me I'm paranoid or something, but I can also just not give them my DNA for no effort and be all the more better off if something like this happens OR if I do commit a crime under current laws I haven't given up the ghost immediately.
This feels like short term little gain for catastrophic effects in the worst case scenario.
The author also makes this like a weird dichotomy with online tracking, I ALSO care about being tracked on the internet and my personal privacy is pretty important to me in general.
I want all of my privacy, or better worded I want privacy to be my choice such as here on HN where I use my real name intentionally. :)
For those still doubting, this is not a hypothetical case.
In the Netherlands, in the early 30's we had a census. All the good jewish citizens of the good kingdom of the Netherlands filled in their religion. Because, why shouldn't they? Fast forward a couple of years, and those detailed census results are really handy for the occupying nazis.
During WW II, 95% of the jewish in the Netherlands were killed. Compare this with a country that does not have a central register of it's citizens (France), where "only" 25% of the jewish were killed.
Also, when you give up your DNA, you're not just giving it up for you. You're giving it up for your family.
The exact same thing happened in Hungary (sort of, we can't blame it all on the nazis, Hungarians did it enthusiastically themselves). They used the census data of 1920 and 1930 (but not declaring your religion and ethnicity was illegal) in the numerus clausus acts and then in the mass killings and holocaust (600k of 850k).
But after the 2nd ww, they used the same census data against the German minority as well, to evict them and move them en masse to Germany.
Okay, but the Jews were already being regularly persecuted for actual millennia at that point, and this was in... the 1930s, with a very different geopolitical situation. On the other hand, I doubt GP has any real reason to fear imminent ethnic persecution. We can and should take our best guess as to the likelihood of catastrophic events into account in our cost/benefit analysis, surely?
Thing is, a fascist government probably isn't bother to use DNA to make sure they got the right guy. To them, if you look like a useful guy to blame, they'll blame you whether the evidence fits or not. The various "deterrence" effects of punishing wrongdoers don't really rely on the punished actually being guilty, it only relies on people thinking they're guilty.
You can see right now with the mass deportations, evidence and making a watertight case aren't priorities once you get to this point.
So I think the author's point stand, that there's little additional risk in some private company having your SNPs. The question is, is it worth it? I'd say, unless you (or a relative you want to help) are into genealogy, it's not worth it, even if the risk is small.
But genealogy is fun. It's also, I think, something that can be deeply meaningful for almost anyone.
Because, do you have all answers to what's important in life? Probably not, I hope? If you haven't, aren't you interested in what answers your own ancestors implicitly (through the lives they lived) gave to the big questions in life?
It's commonly said, "those who learn nothing from history are doomed to repeat it" etc. Might that not be true on an immediate, personal level too? History is more than grand politics, it's also the lives of normal people. And who could you learn most from, if not the people who are most similar to you?
That's my pitch for doing genealogy as a hobby... Now, it should be said, genetic genealogy is a pretty small part of genealogy, unless you're unfortunate with adoptions etc. in your family. Even for that, I'd say there are better options than 23andMe, I do not see personally have my SNP data there.
Point is, for all things, security is a trade-off, about which risks are worth it and for what gain.
It's not a "weird" dichotomy, it's a straight-up false dichotomy.
DNA is just one facet of all the data being actively collected by SuperMegaCorp and/or governments (or probably worst of all, both at the same time and in cooperation with each other).
I fully agree with your apprehensions, but the question is whether this can be prevented at all.
We shed DNA in useful, analyzable amounts wherever we go. In a decade or so, "collectors" of DNA from the air may sprout up everywhere, aggregating DNA of the passersby and sorting it into buckets using, say, face recognition. Even if such practice was limited to the airports, the databases will grow. People have to prove their identity when boarding flights, so pairing them with their DNA trace is feasible.
And if a country bans this practice, another may not, and their database may be hacked and sold openly, so any person which traveled there will be exposed.
The privacy argument might work in some Western countries, and the corresponding legislation may be enacted there, but once you have to travel to India or China or Dubai profesionally, the cat will be out of the bag.
> people have to prove their identity when boarding flights, so pairing them with their DNA trace is feasible
Feasible and present are entirely separate.
Look at illegal immigrants today. The ones who co-operated with the government by e.g. showing up to court appointments or registering in apps are easier to catch because of that documentation. So they're prioritised. Same with DNA. Yes, you could pass a rule and then slowly collect DNA from all Americans who fly. But it's a lot easier to start with those who have already given it up.
Two common points crop up in these kinds of discussions:
- what if you're part of a minority the government wants to disappear, like the Uyghur in China? DNA is indicative of many minorities. You don't have to commit a crime.
- you don't have to share your DNA, some distant cousin sharing theirs is enough to implicate you (as in the Golden State Killer's arrest). You cannot control your far-flung relatives. You may not have a choice in this kind of privacy. That's what makes DNA unique in relation to other kinds of private data: your cousin's browsing history does not implicate you, DNA however may.
maybe this kind of fear mongering is needed to finally make people care about privacy but I doubt most would beyond posting about it on social media for performative outrage.
Partial DNA like 23&me does is so cheap to measure now, something like $20 wholesale and even less if you have very large scales, with a one time requirement to collect. In a decade, whole genome will be similarly cheap, it's $100-$200 wholesale now. Such a hypothetical fascist government can make it a mandatory requirement to be a resident in a country or similar and justify it on crime prevention like they usually like to do.
> Okay but like, I'm not planning on committing a crime and nothing I do now is considered criminal
I genuinely don't know and would like to know: are you being sarcastic? I'm asking because to me it seems like you are, but please correct me if I'm wrong.
He is making a hypothetical scenario, and is pre-emptively addressing the bullshit argument "you only care for privacy because you're a criminal/want to commit a crime, innocent people have nothing to hide".
> That’s a tiny percentage: about 0.02% of your genome. So no, they don’t have your genome, but they do have a small sample of it.
What kind of reasoning is that? Fine, they're not doing whole genome sequencing on you (yet), but having a detailed chip profile of several million informative SNPs absolutely can and will be used to profile you.
Very quickly and easily I might add.
Classical linkage analysis has been used quite effectively to profile people since the 80s using only a handful of (polymorphic) markers, because the power of the analysis is driven more by the number of related members than by the number of markers of an individual.
23&Me has a customer base of more than 10 million people(!!)
> Fine, they're not doing whole genome sequencing on you (yet).
We do Whole Genome Sequencing, and sometimes we outsource the sequencing. We always get the excess of DNA back, and it is stored in our own freezers. Even in this scenario we can't be 100% sure they don't store the DNA or the files for their own purposes, but that's the risk we assume. The DNA we send is only identified by a number.
I can 100% imagine a company such as 23andMe storing DNA for later sequencing, or even doing WGS to do their side business, while sending you back only the genotype. Did you request your excess of DNA back? No, you didn't, because you didn't even know how much you sent or how much is needed for a genotyping. What you did was linking your DNA with your real name and some extra data, so further data augmenting is trivial.
> I can 100% imagine a company such as 23andMe storing DNA for later sequencing
They do, as far as I know. Most genealogical DNA testing companies do, and they tell you so. In case you want to upgrade the analysis later.
> doing WGS to do their side business
That would land them in hot water with the EU. Per GDPR, you can't ask for PII for one purpose and use it for something else down the line. 23andMe customers didn't consent to WGS.
But there's another reason I think they wouldn't do that, and that's that WGS is time-consuming and expensive. Some random person's DNA data isn't that valuable. There's a reason payment is part of their business model, and if that's true for cheap microarray tests, how much more isn't it true for terribly expensive WGS tests?
> but having a detailed chip profile of several million informative SNPs absolutely can and will be used to profile you.
Yes, that was 23andMe's business model. They thought so too. Since they went bankrupt, I think it's safe to say, the commercial utility of such profiles was pretty overrated.
Of course they don't store your entire genome; 99.9% of that is identical for all humans. That has no value to them at all. It's only the 0.1% that can vary between humans that's of any interest.
(Note that there are very different ways to measure that percentage and they can mean very different things. I'm not intending these percentages to be accurate, but I'm sure you get my point.)
Yes the 0.02% thing is a bit disingenuous because he knows better: the bases the chip covers were specifically picked because they are variable in the human genome. They don't have "your genome", but as most of it is the same for everyone those 640k snps give much more information than 0.02% of the letters of a book would.
> The fact is that if you’re worried about privacy, you should be far, far more concerned about all the data that various companies are hoovering up about you based on your online activity.
This fallacy is oh so common in folks resisting privacy measures. I guess it's psychologically tough for them to realise how bad the situation is, so they have to go to any place they can to resist changing their habits
Maybe it is just meant to emphasize that there are things they themselves believe to be worse. But yeah, this fallacy is extremely common. I love rationalwiki.org.
Data that can be used against my children is another.
My late wife had MS. It took her. Insurance companies would love that data to load against anything my kids do.
There are other issues but the fact is that companies will use DNA and every other data point they can to maximise what they take and minimise with loaded terms what they might, just might, maybe, pay out.
Oh man, I have MS and I have immobility and incontinence issues at 30. Based on the location of lesions, I have a high risk for four-limb paralysis. It scares the hell out of me, and my quality of life is out the window already anyways. Life was hard before, it is much harder now.
Insurance companies cannot use it. And if insurance companies in the future would be allowed to use it, they would require you to get DNA samples for your policy.
They don't use It, but they might use an aggregate of it it. Like google doesn't sell data, but it leaks it freely in the ad bidding process, it's technicalities all the way in this business i feel like.
Also, it's not about fascist regimes or not being a criminal, it's about databases getting hacked and ending up in the hands of scammers
The article fails to explain why you shouldn't delete your DNA data at 23 and me. It does a good job explaining why the risks of letting them keep it are exaggerated, which might be true (I'm still skeptical), but what is the reason why you should let them hold onto this information? What is the advantage to me to let them keep my DNA data?
(Disclaimer: I never used 23 and me, so this is entirely hypothetical for me.)
The reason is the network effect of enough people having their profiles in one place for genealogy discovery to work as intended. As OP says, he has some relatives in the 23andMe network, but fewer now that people started deleting their data.
It suggests you your genetic relatives as they join 23andme. There are genetic reports that are added or updated wi5 new discoveries in genetics. Both reasons are quite minor benefits and i wonder if 23andme will continue at all.
I wonder why he cares whether or not people delete their DNA?
I asked them to delete mine (although I'm not optimistic that they did so), and I'm glad that I did for two reasons. First, I don't think they dealt with me transparently and honestly from the start and second, whether or not that data is directly a risk to me, it's yet more data about me that's out there in the world and can be combined with other data to make a potent risk.
The less data about me that exists in any database, even trivial or apparently innocuous data, the better.
You'd think my ideal self-interest is for no one to volunteer for any research except my own relatives so that all medicine is optimized to my care. But that doesn't work that well. The genome itself is just not that useful. If you learn something from that VCF for a whole-genome sequence that's interesting, feel free to let me know.
I personally benefited from the aggregate that is the UK Biobank's repository of genome sequences and medical histories, and I'm grateful for everyone who contributed that for science. PGP is the closest I can get to providing my data apart from All Of Us which has a bit of medical data about me but no one has all my medical history.
I hope that, if nothing else, I am a piece in an instrument for humanity to comprehend the Universe. Either through my genome being useful when compiled with others or as a cautionary tale to making your genome available.
> Zip code 94107 is located in San Francisco, California, specifically in the Potrero Hill neighborhood. It is part of San Francisco County. There are approximately 163 homes for sale in this zip code, with prices ranging from $338.6K to $5M, according to Realtor.com. The minimum combined sales tax rate for 94107 is 8.63%, according to Avalara. The per capita income in 94107 is $124,681.
It is interesting that knowing your zipcode I might have predicted your response.
> I am a piece in an instrument for humanity to comprehend the Universe.
For a lot of people, if their data is being used as a benefit, then they should be properly compensated for that. They're more likely to be trying to comprehend how to keep food on the table.
94107 is a discontinuous zip code. It contains both SOMA (where I live) and Potrero Hill which you have quoted. What was the prediction?
> For a lot of people, if their data is being used as a benefit, then they should be properly compensated for that. They're more likely to be trying to comprehend how to keep food on the table.
Certainly, I am a great believer in the market. If they believe the price is insufficient, there is no reason to sell. I am only offering them this information for free so that they may set their price in a more informed manner. I'm doing that because I have a related semi-religious personal principle https://wiki.roshangeorge.dev/w/Observation_Dharma
I have no 23&Me profile, and I prefer to keep my genome private. However, IF you are NOT in the personal-data risk-averse camp, there is a point in rather giving your genome data than giving your online activity profiles. The former can at least be used for biology research/treatment development and thus clearly has higher upside for humanity.
Readit News
You can tell me I'm paranoid or something, but I can also just not give them my DNA for no effort and be all the more better off if something like this happens OR if I do commit a crime under current laws I haven't given up the ghost immediately.
This feels like short term little gain for catastrophic effects in the worst case scenario.
The author also makes this like a weird dichotomy with online tracking, I ALSO care about being tracked on the internet and my personal privacy is pretty important to me in general.
I want all of my privacy, or better worded I want privacy to be my choice such as here on HN where I use my real name intentionally. :)
In the Netherlands, in the early 30's we had a census. All the good jewish citizens of the good kingdom of the Netherlands filled in their religion. Because, why shouldn't they? Fast forward a couple of years, and those detailed census results are really handy for the occupying nazis.
During WW II, 95% of the jewish in the Netherlands were killed. Compare this with a country that does not have a central register of it's citizens (France), where "only" 25% of the jewish were killed.
Also, when you give up your DNA, you're not just giving it up for you. You're giving it up for your family.
You can see right now with the mass deportations, evidence and making a watertight case aren't priorities once you get to this point.
So I think the author's point stand, that there's little additional risk in some private company having your SNPs. The question is, is it worth it? I'd say, unless you (or a relative you want to help) are into genealogy, it's not worth it, even if the risk is small.
But genealogy is fun. It's also, I think, something that can be deeply meaningful for almost anyone.
Because, do you have all answers to what's important in life? Probably not, I hope? If you haven't, aren't you interested in what answers your own ancestors implicitly (through the lives they lived) gave to the big questions in life?
It's commonly said, "those who learn nothing from history are doomed to repeat it" etc. Might that not be true on an immediate, personal level too? History is more than grand politics, it's also the lives of normal people. And who could you learn most from, if not the people who are most similar to you?
That's my pitch for doing genealogy as a hobby... Now, it should be said, genetic genealogy is a pretty small part of genealogy, unless you're unfortunate with adoptions etc. in your family. Even for that, I'd say there are better options than 23andMe, I do not see personally have my SNP data there.
Point is, for all things, security is a trade-off, about which risks are worth it and for what gain.
DNA is just one facet of all the data being actively collected by SuperMegaCorp and/or governments (or probably worst of all, both at the same time and in cooperation with each other).
(not entirely true because we also spread other biometric data, such as facial images)
We shed DNA in useful, analyzable amounts wherever we go. In a decade or so, "collectors" of DNA from the air may sprout up everywhere, aggregating DNA of the passersby and sorting it into buckets using, say, face recognition. Even if such practice was limited to the airports, the databases will grow. People have to prove their identity when boarding flights, so pairing them with their DNA trace is feasible.
And if a country bans this practice, another may not, and their database may be hacked and sold openly, so any person which traveled there will be exposed.
The privacy argument might work in some Western countries, and the corresponding legislation may be enacted there, but once you have to travel to India or China or Dubai profesionally, the cat will be out of the bag.
Feasible and present are entirely separate.
Look at illegal immigrants today. The ones who co-operated with the government by e.g. showing up to court appointments or registering in apps are easier to catch because of that documentation. So they're prioritised. Same with DNA. Yes, you could pass a rule and then slowly collect DNA from all Americans who fly. But it's a lot easier to start with those who have already given it up.
- what if you're part of a minority the government wants to disappear, like the Uyghur in China? DNA is indicative of many minorities. You don't have to commit a crime.
- you don't have to share your DNA, some distant cousin sharing theirs is enough to implicate you (as in the Golden State Killer's arrest). You cannot control your far-flung relatives. You may not have a choice in this kind of privacy. That's what makes DNA unique in relation to other kinds of private data: your cousin's browsing history does not implicate you, DNA however may.
Dead Comment
Probably easier to place you with your cell phone location data, or surveillance cameras and face recognition.
That's borderline no longer a hypothetical.
I genuinely don't know and would like to know: are you being sarcastic? I'm asking because to me it seems like you are, but please correct me if I'm wrong.
What kind of reasoning is that? Fine, they're not doing whole genome sequencing on you (yet), but having a detailed chip profile of several million informative SNPs absolutely can and will be used to profile you.
Very quickly and easily I might add.
Classical linkage analysis has been used quite effectively to profile people since the 80s using only a handful of (polymorphic) markers, because the power of the analysis is driven more by the number of related members than by the number of markers of an individual.
23&Me has a customer base of more than 10 million people(!!)
We do Whole Genome Sequencing, and sometimes we outsource the sequencing. We always get the excess of DNA back, and it is stored in our own freezers. Even in this scenario we can't be 100% sure they don't store the DNA or the files for their own purposes, but that's the risk we assume. The DNA we send is only identified by a number.
I can 100% imagine a company such as 23andMe storing DNA for later sequencing, or even doing WGS to do their side business, while sending you back only the genotype. Did you request your excess of DNA back? No, you didn't, because you didn't even know how much you sent or how much is needed for a genotyping. What you did was linking your DNA with your real name and some extra data, so further data augmenting is trivial.
They do, as far as I know. Most genealogical DNA testing companies do, and they tell you so. In case you want to upgrade the analysis later.
> doing WGS to do their side business
That would land them in hot water with the EU. Per GDPR, you can't ask for PII for one purpose and use it for something else down the line. 23andMe customers didn't consent to WGS.
But there's another reason I think they wouldn't do that, and that's that WGS is time-consuming and expensive. Some random person's DNA data isn't that valuable. There's a reason payment is part of their business model, and if that's true for cheap microarray tests, how much more isn't it true for terribly expensive WGS tests?
Yes, that was 23andMe's business model. They thought so too. Since they went bankrupt, I think it's safe to say, the commercial utility of such profiles was pretty overrated.
(Note that there are very different ways to measure that percentage and they can mean very different things. I'm not intending these percentages to be accurate, but I'm sure you get my point.)
https://rationalwiki.org/wiki/Not_as_bad_as
Deleted Comment
I worked in DNA analysis for 6 years.
You should absolutely be worried about the data that various companies are hoovering up. Your DNA is part of it.
Data that can be used against my children is another.
My late wife had MS. It took her. Insurance companies would love that data to load against anything my kids do.
There are other issues but the fact is that companies will use DNA and every other data point they can to maximise what they take and minimise with loaded terms what they might, just might, maybe, pay out.
It's not about the now.
It's about the later.
So it’s pointless in the end
(Disclaimer: I never used 23 and me, so this is entirely hypothetical for me.)
I asked them to delete mine (although I'm not optimistic that they did so), and I'm glad that I did for two reasons. First, I don't think they dealt with me transparently and honestly from the start and second, whether or not that data is directly a risk to me, it's yet more data about me that's out there in the world and can be combined with other data to make a potent risk.
The less data about me that exists in any database, even trivial or apparently innocuous data, the better.
You'd think my ideal self-interest is for no one to volunteer for any research except my own relatives so that all medicine is optimized to my care. But that doesn't work that well. The genome itself is just not that useful. If you learn something from that VCF for a whole-genome sequence that's interesting, feel free to let me know.
I personally benefited from the aggregate that is the UK Biobank's repository of genome sequences and medical histories, and I'm grateful for everyone who contributed that for science. PGP is the closest I can get to providing my data apart from All Of Us which has a bit of medical data about me but no one has all my medical history.
I hope that, if nothing else, I am a piece in an instrument for humanity to comprehend the Universe. Either through my genome being useful when compiled with others or as a cautionary tale to making your genome available.
It is interesting that knowing your zipcode I might have predicted your response.
> I am a piece in an instrument for humanity to comprehend the Universe.
For a lot of people, if their data is being used as a benefit, then they should be properly compensated for that. They're more likely to be trying to comprehend how to keep food on the table.
> For a lot of people, if their data is being used as a benefit, then they should be properly compensated for that. They're more likely to be trying to comprehend how to keep food on the table.
Certainly, I am a great believer in the market. If they believe the price is insufficient, there is no reason to sell. I am only offering them this information for free so that they may set their price in a more informed manner. I'm doing that because I have a related semi-religious personal principle https://wiki.roshangeorge.dev/w/Observation_Dharma