You'll get it when your insurance company bought your profile and automatically added a ton of pre existing conditions to the list of things they won't cover for you. Or when the government decides to start rounding people up based on ancestry or health conditions.

It'll be way too late by then, but at least you'll get it.

I considered this when I sent them my sample. For me the benefit outweighed the risk. I'm sure their DNA database have been sold or given to all kind of companies and agencies since then (many years ago). Asking them to delete my record now is pointless. Anyone who cared about it already has it.

Not sure you are right. 23andMe may exclusively share/sell summarized GWAS data rather than individual level data. That is how genetic data is usually shared even among human geneticists.

It's funny because people are genuinely upset at others who do send their dna around; but assume that their own government might allow such a misuse of personal identifiable information. If your government allows that, the problem is the government, not the people who sent their dna to 23andme.

> Or when the government decides to start rounding people up based on ancestry

And you think that not having sent your dna to 23andme would be a good protection from that? Like, since you are among the smart ones who didn't send the dna, you can keep quietly minding your business while the government "rounds up" people on a racial basis?

>since you are among the smart ones who didn't send the dna, you can keep quietly minding your business while the government "rounds up" people on a racial basis?

Sure it feels better not being a collaborator of your own demise though.

I think that if your government started acting nazi, you should become a collaborator of your own demise by joining an armed resistance. Or emigrate.

Seriously, this attitude sounds like keeping the knives under lock at your home in case your wife decides to murder you. If you think it's a possibility, then I guess this poses harder questions than where to keep the knives.

It's much easier to convince a family member not to share DNA with a data broker than it is to stop government corruption. Is it ideal, no, but it's realistic.

>And you think that not having sent your dna to 23andme would be a good protection from that? Like, since you are among the smart ones who didn't send the dna, you can keep quietly minding your business while the government "rounds up" people on a racial basis?

I'm going to assume that you're debating in good faith and will accept a powerful but unsympathetic example. The Golden State Killer was caught because his family members used commercial genetic tests, allowing investigators to triangulate him through DNA left at the scene, despite him never linking his DNA to his identity: https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Arrest,_...

Obviously this was a terrible man, and I certainly don't regret him being in jail. However, it demonstrates that your relatives can expose you to privacy violations without your knowledge or consent, and likely without their knowledge. It's like when an app asks for the list of your phone contacts, it's not just your privacy you're surrendering.

If we ignore that the man in particular was a horrific serial killer, which I know is hard to do, this shows how people can suffer consequences from other people taking these DNA tests, and surely you can see how that kind of sucks? Like, this shows the technical possibility, which is unaffected by the actual reason for doing so.

No, I understand (they caught a killer in Italy in a similar way, though in that case the dna tests were taken after the fact, in a sort of "gradient ascent" pattern).

But your example is that of a licit, even desirable use of those dna tests. They can be used for bad purposes, but that is what you have a government for: to decide what can be done and what can't. Health insurances obtaining your dna sequence from a third party to change your premium? Abso-fucking-lutely unacceptable. (And besides, at that point, what keeps the insurance company from asking your dna directly, unless you want to pay max price?). If you can't keep the government from allowing such things, you should either campaign to change the government or emigrate. This whole "let's keep a profile as low as possible because the government might go against me someday" is both a bit paranoid and fatalistic. If you distrust the government so much then you should put all your energies in changing it, not in keeping a low profile.

The government in power today is not guaranteed to exist indefinitely. Power structures change, and there is no definitive way to prevent your government changing underneath you as you are a single voter amongst a sea of people with different priorities.

The only power you as an individual truly have is to lower your risk profile if such an adverse event were to happen. History has shown time and time again that governments can change dramatically for the worse in short timespans, and if they have data to use against you then they will definitely use it

Sure, but can you at least concede that this technical possibility eliminates the argument that these services can't affect those that don't opt into them? That's the argument I'm trying to make, not necessarily that a particular serial killer had his privacy violated.

There's a big gap between "powerless" and "sovereign".

When the literal Nazis took over Belgium and the Netherlands, the actions taken by the resistance in each included attempting to destroy official records of who all the Jewish people were: https://en.wikipedia.org/wiki/1943_Amsterdam_civil_registry_... and https://en.wikipedia.org/wiki/Jewish_resistance_in_German-oc...

Much harder to do that these days, when backups are cheap.

DNA testing is extremely popular with Ashkenazi Jews for some reason. And they're, no surprise, very very endogamous, so that's an ancestral component you can identify fairly reliably, unlike, say, Scottishness.

I think my frustration with the people willing to send their data is that there's the "ideal world" where sequencing your DNA shouldn't lead to things like your government or insurance provider using your genetics against you.

And I'm frustrated because I haven't trusted my government or these companies to be responsible with that data even before it was glaringly obvious they wouldn't. So now here we are in the "I told you so" phase, and it just sucks how much of this data is already out there, ripe for misuse. And now it's just too late.

This makes a lot of sense if you subscribe to the libertarian view that corporations should have unchecked power and the governments is out to get you.

I don't know how you're confused enough to read this as some kind of libertarian bend, but I'm not interested in the genre of political fantasy libertarianism exists in. I'm talking about the reality of the current administration, & how it's never been a good idea to send this trove of highly personal data to a private corporation with a profit motive.

It's kind of the opposite of a libertarian dream.

For what it's worth, the ACA made it illegal to deny or charge more for health insurance for preexisting conditions.

I still largely agree that it's worth keeping your DNA out of the hands of data brokers for several reasons, but as laws exist today that would not be legal.

The political party that hates the ACA with delirious passion is currently in control of the House, Senate, White House, and Supreme Court.

But if this government is willing to allow insurance companies to factor in 23andme type data, what makes you think that will be the extent of this type of genetic data analysis? That is the far-fetched part to me, it relies on a very narrow range of possible dystopias that takes advantage of voluntary genetic testing but stops short of mandatory or coerced testing.

It's reminiscent of some prepper wanting to exclusively horde USD. I just don’t see a doomsday scenario in which that matters compared to hording gold or some other store of value with more intrinsic value. It's behavior suggests a weird cherry-picking of what are likely correlated risks.

The ACA forbidding insurers from using DNA data was a much debated point of a very contentious piece of legislation in a very recent congress. Coercing the public to provide samples of their dna outside of criminal proceedings is unconstitutional. Why do you think the risks of those 2 things changing are remotely comparable?

>Coercing the public to provide samples of their dna outside of criminal proceedings is unconstitutional.

Most people in the US are insured through private companies. How would it be unconstitutional for those companies to refuse to insure or jack up prices for people who decline genetic testing?

It just seems strange to believe that this data would be both incredibly valuable to health insurers and that they would have no new ways to gather it outside relying on decade old data from now defunct companies. Modern insurance companies don't identify smokers by buying the old Marlboro Miles database, they make disclosing smoking a part of the application process.

The irony being that the whole thing is political theater: the basic outline of the ACA was a Republican bill before Obama ran with it, at which point the Republicans no longer wanted to visibly support it. And, the real net benefit of the ACA has been to further entrench private health insurers, which at this point is not a Democratic goal.

And they have been in the past. Yet the ACA remains.

A single thumbs down was all that saved it.

In Germany, preexisting conditions are excluded from total permanent disability insurance. Considering how expensive and life-changing this insurance can be, that's quite an issue.

The ACA may very well not be long for this world.

With all due respect, that's baseless FUD.

Call me naive, but I believe insurance companies have more concrete battles to fight (e.g. confirmed preexisting conditions), than getting in a legal quagmire with insurees just because "you have 2.7% risk of having early onset of X, instead of the 1.35% of the average population".

I understand the allure of painting everything with dystopian Orwellian colors and "but-what-if-they-do" thing, but the fact that 23andme is going bankrupt and others are not much better (Ancestry was acquired by a PE firm in 2020, and is increasingly pivoting away from DNA) is a great indicator that DNA data is commercially worthless.

If anything, the biggest risk is your data being used for ads. I bet some pharma companies would love to use your DNA data to enhance their 1PD propensity models.

Governments often round people up based on some criteria. Unless something has changed that I don't know about, I don't see why this won't happen again.

If that happens with your government, your best option is to be somewhere else.

That's quite a failure of creativity. Like Google with their "I'm not touching you" profiling by metadata, you don't have to identify an individual to be able to target them.

There's also an incredible asymmetry of information in these fields and industries. What makes you think you know enough to say that protected data isn't being laundered, legally or illegally, through private companies around the globe to inform the very opaque pricing of medical services and insurance in the US?

I'm not really disagreeing with you, but it seems to me like the insurance company already has all those blood panels, etc that they paid for - they know what my issues are long before they get around to caring about what 23andMe might tell them. And this government will come after me for being a Democrat and my neighbors for being melanated long before they care about my DNA.

There are plenty of juicy tidbits of info in your genetics that an insurance company would be very interested in having to not have to pay you when you need them, info that wouldn't be in a blood panel.

If any of that is happening, society is already a fascist dystopian hellhole and my 23andme DNA is least of my problems

This sounds like a great safeguard, for an administration that respects laws & precedent. Which we don't have right now.

If a company offered to pay you $119 for sending them sample cells from your body so that they can sequence your DNA and do whatever they want with it. Would you take up on the offer? I would not.

I paid them a lot more than $119 to have my DNA sample.

I am also fortunate enough to just not care about $120. That’s not true of everyone though.

Do homeless people in America still sell their blood?

We have employees who sell their plasma because they've been losing money every year and are afraid to also lose their jobs. Wages are stagnant for the working class.

I'd imagine you'd care at least a little bit considering you're paying them for the privilege.

"We have identified that you are at an increased risk of cancer. To ensure we give you the best care your insurance premium has now gone up 20x, you are welcome."

The scenario is not occurring, and anyway... if you had information about an increased risk, you can use that information to mitigate the risk and avoid the harm. Even if you think insurance and doctors are good for you, efficient and help you feel better... they are much more effective if you as the patient have a pretty good idea of what might be going wrong.

This has been illegal in America for almost two decades.

> You will understand once DOGE starts ethnic cleansing

The administration's ethnic cleansing policy is already being executed, DOGE so far hasn't been particularly central to that aspect of the Administration's abuses.