23andMe could still have operated legally under this scheme. They could have done the analysis and sent you a printed sheet. But no, they had to store everything to be able to double dip by selling the data to pharma companies and whoever else would pay for it.
If you can't turn a profit without underhandedly selling your users' data. You deserve to fail.
For example, they talk about it on this page, which is linked from the about menu (so available with pretty small effort): https://www.23andme.com/research/
I expect lots of people also like that they get updates when information about new markers becomes available.
You're welcome to trust them, but no I.
Could they tho? The ancestry analysis itself is based on the data of other users in other parts of the world?
It's all about the money, always. So not gonna happen.
Non-profit in the US is a tax status. Many CEOs of non-profits enjoy multi-million dollar salaries and bonuses.
And since 23andme (as I assume others) don't do these anonymously, there is no hope. Unless people use someone as a proxy (i.e. I-1 give my sample to a male colleague to send it as his-2, he-2 gives his sample to someone else to send it as his-3, and so on..). Police would eventually find the guilty in case of a crime, but the 23andme's of this world will be selling confusing (wrong) data.
I think the angst about this comes from men who don't want their status as fathers of illegitimate children (or, rapists when they were younger) unmasked.
I mean, wasn't that completely obvious?
It's no longer so easy when the definition of "crime" gets expanded. Let's take this scenario:
- you're a first generation Chinese immigrant in the US
- a nephew of yours is in China and critical of the CCP
- you decide to have your genome scanned into 23andme or whatever to determine if you are at risk of genetic illness
- your nephew sprays an anti-CCP tag on a wall somewhere
- the Chinese police gathers DNA evidence from a laxly discarded spray can, but doesn't have fingerprints so they can't immediately link the can to your nephew
- the Chinese government, either via a legal subpoena or via espionage, gets its hands on your genetic profile from the genetic analytics company
- the Chinese government finds your data, now knows that the sprayer must be related to you in some way, and forces everyone of your family to subject to a DNA test
Sounds dystopic? Yes. But this is exactly where we will be headed. Police here in Germany already do DNA tests on petty vandalism [1].
[1] https://www.fuldaerzeitung.de/fulda/fulda-bahnhof-neuhof-dna...
This sort of thing looks more like a psychological crutch than an actual effective action.
They were processing so much DNA that they had to write a special rule allowing border agents to _not_ collect it if it would cause operational difficulties to do so.
https://www.federalregister.gov/documents/2020/03/09/2020-04...
But in recent years, the scope of said "severe" crimes list has expanded massively, across the Western world, driven by both powerful industry lobbies (such as the copyright cartels) and "concerned citizens" aka authoritarians in disguise... and now you got a DNA investigation for about 4.000€ in damages of broken glass and a ticketing ATM. No matter what: this scope creep is not justifiable.
On top of that comes the risk of "what if our governments and the tools/data they and society (both in the form of individuals and companies) possess fall into the hands of authoritarians". For a long time this risk has been laughed off, but nowadays both the far-right (in Europe and the US) and the far-left (in Southern America) have seriously raised the probability of such a scenario.
An amusing thing here is that the arguments against DNA were also made against the use of photography, back in the 1800s. At some point people have to realize that personal unease is not an argument.
that's not how it works though. if you find enough other people that have the same uneasiness, then you can form groups that get people elected to make rules that forces everyone else to comply with your uneasiness.
You're uneasy? Boo frickin hoo.
I beg to differ. The fact we're even having this discussion means not everyone is happy with the situation. Maybe Stockholm Syndrome has kicked in for you, but I'm still resisting
could you stop repeating this simple fallacy? Because millions of people could not organize and opt-out of something being commercialized, that also benefits government, in the USA Does Not Equal "everyone is happy"
in fact, lots of people are deeply unhappy.. so the statement "everyone is happy" is not only not true, but actively provoking.
It is not in the power of an unhappy or protesting individual citizen, let along an elderly, impoverished or medically vulnerable person, to stop the rollout of Big Tech Thing.
One of your brothers committed a crime.
The police, during an investigation, find your father's data and realize that one of his children is the criminal.
Congratulations! You are now the target of an investigation, the purpose of which may not be to find the truth, but to successfully convict a suspect.
All you have to do to clear your name for that crime is to turn over your DNA to the police to be in their records forever[1], and Bob's [2] your brother [3].
[1] - You might be able to get a court to order that your DNA records are destroyed after proving your innocence, but it's an ask to believe this would actually happen in every case.
[2] - https://www.merriam-webster.com/dictionary/bob
bob 3 of 7 verb (2) bobbed; bobbing
transitive verb
1) obsolete : deceive, cheat
2) obsolete : to take by fraud : filch
[3] - https://www.phrases.org.uk/meanings/bobs-your-uncle.html
Even without defining a specific model around how genetic data should be handled, I think it's more than fair to say that most people right now don't even consider how their choice to sign up for 23andme might affect their relatives (already born or otherwise). Even if they do, in my experience, it's only to a very surface-level degree.
Tools like Telegram or Signal do not allow creating accounts without having a valid phone number. Of course, it is possible to use a web service to receive the registration SMS, but that shouldn't be the case in the first place.
Personally speaking, I think Equihax was the better counter-argument; at least with 23andme YOU as a customer had to DECIDE to use their services and weigh the pros-cons of doing so, with Equihax I was forced into a rating system to determine my eligibility in a system that hoovers up any and all data sold to them by 3rd parties and holds all my personal information in order to complete anything from a loan application to a job application.
And when found to have been breached no effective recourse was made, and instead of admitting fault to a very high probability of Identity theft being the end result a token 'credit system monitoring' service was offered, which once again relies on these credit agencies who share/distribute this information without my consent and created the problem are let off scot-free and never suffer any consequences.
In short, it's a naive argument made from often ignorant and self-defeating practices that make others worse off because of their complacency and refusal to take privacy serious.
What I'm trying to say is: I don't think comparing it to equifax is reasonable in that regard.
The stolen data included the person’s name, birth year, relationship labels, the percentage of DNA shared with relatives, ancestry reports and self-reported location.
The real breach is for recently deceased people (here the time span varies greatly, but dead for ~100 years is definitely enough if you ask me) and for living people. Actually in Sweden the death info is publically available generally right away, more or less. You can buy USB sticks with ~all deaths up until very recently.
While I agree it's a perfect counter-argument to that, is that what people always say? I'm not sure I've heard that argument as much as "why do you care so much about privacy?" full stop. As in, they don't really understand why anyone should care about privacy. And this isn't really a counter argument to that, any more than any other breach. And to be fair it's not really even a counter argument to that until you show the harm that came from it. What do you think will happen to people who had their ancestry data stolen here?
It is not necessary to show actual harm from this breach for it to defeat the tacit premise behind the statement you are discussing, which is that their profligacy with their personal data cannot, by itself, reveal any of your personal data.
In the case of 23andme, it's a perfect answer: We don't know what's hiding in our DNA and I don't know how people will use that against me in the future.
The immediate concern I had with this story is nefarious groups or individuals purchasing this data to target people with violence based on their ethnicities. Imagine if the genome of millions of Europeans was available on the black market in 1930s Europe.
Ancestry data would certainly be of interest to a particular demographic known to discriminate by caste. There's no escaping your low-class heritage when anyone can look up your stolen DNA profile on the black market.
I'm not Jewish, but I feel like there's some sort of reason for them not wanting a list of who they and where they live to exist.
No, we need DNA profiles to find Jews. They're as elusive as the fucking Illuminati. There's just no way to find them unless we have blood samples and stolen DNA profiles.
Limited time offer: accuse Israel of war crimes on social media. The Jews will come to you.
There are a ton of Jews who don't follow kosher law, who aren't particularly religious, etc etc. Yet they would be targeted by anti-semites.
And the choice to share or protect this information just got taken away from every one of their customers forever.
Really? As a 25% jew whos genetic data was probably just stolen, I'd like to disagree with that statement.
It’s similar to the Office of Personnel Management data breach when every Federal Employee was just 0wn3d. It included 21.5 million background investigations into people and the personnel files of every federal employee and most contractors.
Just slightly sensitive stuff. Nobody knows how many people died as a result of the hack, but I’m sure it was non-trivial because a LOT of people got surprised doxed.
This information is still rattling around out there and will have implications for generations.
Imagine if the same could be done for demographics based on genetics — the risk factors for medical conditions, the ethnic ties you’re talking about, etc.
It’s weighty stuff.
What if you're able to pinpoint unique loci for an individual or group which can serve as a target of a highly specific bio-weapon? Do you think genomic bio-weapons aren't being explored as future weapons?
https://www.samharris.org/podcasts/making-sense-episodes/spe...
Ah yeah, exactly who you should go to for bio-engineering advice
And to you I guess a cotton or sugar plantation was not a capitalist enterprise?
This is true on one level, as economic systems are not actors, but abstractions for aggregates of actions; its false on a more concrete level because governments are also not real concrete actors but abstractions for aggregates of real actors.
Both governments and economic systems (and corporations, which you seem to drop in as ig they were the same as economic systems) are abstractions through which real actors act, including to oppress, and very often actions by thr same actors involves all thrre abstractions (even a single action might). Corporations, after all. are themselves creatures of gogernment through law, and economic systems exist only as ideals without being made manifest through legal systems.
> A corporation has never marched people to camps,
You probably don't want to think about most of the best known early joint-stock conpanies (any of the variously East India companies, but especially the British, the Royal African Company, etc.)
> If I don’t want to deal with a corporation, I have the right not to — unless government forces me to.
Corporations—like any individuals—can and do apply coercive force on their own with only after-the-fact review by governments (and, in many cases historically, with obvjecting governments having limited power to apply sanctions), so, no, this isn't correct.
Really?
Let me introduce you to Steven Donziger.
https://www.theguardian.com/business/2021/jul/26/lawyer-stev...
Ho and what about all those corporations that used Jewish slaves during world war 2?
Or just today, Coca Cola killing people protesting them taking their land away or Amazon imposing atrocious work conditions to their employees?
Before blindly defending corporations I'd try and take a look at reality...
It's not as simple as "government bad and corporations good"
Or, maybe more likely than discriminating based on demography, what if certain "Obamacare" provisions are repealed and insurance companies are allowed to adjust prices based on genes, including the genes of relatives.
It's all a little far fetch, but only a little. My point is privacy is important and even those "with nothing to hide" might second guess their view when they imagine being discriminated against because of their genes. I think we probably agree on this point but got caught up in the details of a hypothetical.
Sounds like an absolute treasure trove for a life insurance company. Or, would you disagree?
Disagree. Life insurance companies already requir blood tests and urine tests before insuring a consumer. They already have this data
Funny! We all know it would be a lone rogue engineer that did it in the end and management would apologize on their behalf.
"Feed personal data into this service and it'll spit out a risk assessment based on a model built on 6.9M historical health data sets."
Do you talk family problems with all your neighbours ? With strangers ?
How would you feel when your employer will know everything you did last night ?
I'm not sure I've ever heard anyone I know mention privacy at all, as if they're totally ignorant to it. In reality, the majority of people will just let Google or Microsoft do whatever with their personal information as long as the product or service is slightly more convenient than the last one.
I think it is difficult for some people to think about abstract ideas. When you bring it to the physical world everyone understands it is vexing.
Absent that, the argument holds that screeching declarations about privacy tend to be overblown.
* You don't have to care about privacy if you didn't do anything illegal.
* If you do care about it, you can just choose not to share your information.
* If you don't share but your data is still leaked, it didn't affect your life anyway.
The point is an average person is incapable of having boundaries with these corporations who have all their data and benefit from it, and we have no way of predicting how all this data about us will affect us.
The point is that these privacy claims are nearly exclusively theoretical. Privacy advocates constantly tell anyone who will listen about the complete destruction of privacy in modern society, and yet nothing even resembling the consequences they claim will occur is actually happening.
Probably not, but that doesn’t mean you’re comfortable with it being shared.
We don’t wait for a pedestrian to be run over by a car to decide that a specific road is too unsafe for a specific speed, we tend to implement appropriate speed limits to prevent such irreversible things like death from happening.
Same applies with privacy. Once a person’s data is out there, you can’t take it back anymore, so if someone every finds a way to make money out of it to the detriment of this person, it’s too late. You can arrest this someone, then the next one will pop up and do the same with the same data.
If this is such a big issue, why hasn't more happened already? Why don't we see massive insurance denials based on Facebook posts? Where are the droves of people denied loans because it's leaked they use crypto? There was a huge Ashley Madison data dump some years ago, yet there were no mass firings or even divorces as a result.
Honestly, if nothing big comes out of this DNA leak, I think the idea that privacy is critically important is dead. If someone's DNA being leaked out into the world doesn't matter in a meaningful and systemic way, then there's nothing here.
DNA was not leaked. ancestry only.
>someone dying by getting hit by a car is more serious than someone's SSN getting leaked.
yes, I don't see why the analogy is not valid anymore though. Analogy was about preemption, not gravity of the issue.
>If that's such a big issue, why hasn't more happened already?
Don't know, but we are running circles, my point is, we shouldn't wait for more to happen. I thought you got that.
I'm talking about prevention. Like "don't walk at night in this area alone".
I know what you’re talking about, I just don’t think you realize how such things become rules. We very rarely, if ever, create preventative rules, and when we do the rules are terrible because we don’t know the issue well enough.
It is so obvious that your relatives sharing their genomic data with 23andMe reveals a lot of information about you. We can only hope people will realize that this also holds true for collecting behavioural data on other people sharing the same background as you.