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.
Non-profit in the US is a tax status. Many CEOs of non-profits enjoy multi-million dollar salaries and bonuses.
It's all about the money, always. So not gonna happen.
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?
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.