[BitwiseFool]

This is great. I had a 23andMe test done years ago and one of the reasons why I chose to do it was because my genetic data might be helpful for others.

I personally don't feel like I 'own' my genetic code and I'm quite happy to let scientists analyze it. However I understand while many people do not feel the same way.

[rainyMammoth]

23AndMe is reusing the same model as Google with the extra advantage that people are naively ready to pay for it.

They have the same privacy issues as Google and I would certainly never trust them with my DNA. I know it's easy enough to get access to it but I'm certainly not going to pay or volunteer to give it. That information is eventually going to get weaponized.

What will happen once they manage to statistically correlate your DNA with your political beliefs for example? Or correlate your DNA with a profile that is more likely to buy specific products?

Right now I see them doing the same thing that Google did 15 years ago. They are hyping consumers by pushing stories of curing rare diseases with the help of statistics. Similar to Google 15 years ago that pretended to make the world a better place by creating top technology. It is clear to me what the end goal is going to be though.

23AndMe CEO is the sister of Youtube CEO and ex-wife of Sergei Brin. Enough said, no thanks.

[searine]

>They are hyping consumers by pushing stories of curing rare diseases with the help of statistics.

Except they actually are.

23andMe data has been invaluable in the effort to figure out what is causing complex genetic disease. Here is one I've personally used to research depression : https://www.nature.com/articles/ng.3623

[Real_S]

Here is a study on the genetics of political belief[0]. In summary, there is a large genetic component.

[0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038932/

[klipt]

Causal or just correlation?

It's easy to imagine spurious correlation. Eg Italian Catholic populations may be more right wing than British Protestant populations.

But that doesn't mean it's Italian genes making then right wing.

[Real_S]

These twin studies control for ethnicity and cultural heritage.

Side note, I personally know one of the researchers on this paper and can vouch for his talent and credibility.

[mateo1]

You imply that they care about this. They don't.

[dpiers]

I'm relatively paranoid when it comes to privacy and also did 23andMe for similar reasons.

I stopped thinking of my DNA as a secret when I realized how impossible it is to keep other people from having access to it. Once someone knows it, you cannot change it like a password.

DNA is an anti-secret. You share it everywhere you go and cannot stop. It's no more secret or personal than your shoe size or height.

[stanmancan]

My concern in these services is, at what point in the future does your DNA get weaponized against you? When do you get declined for health insurance, or have jacked up premiums, because the insurance company bought a report from 23andMe that says you have a predisposition to expensive disease?

My DNA isn't a secret, but I don't yet feel comfortable voluntarily handing it over to be indexed by a for profit company that has little to no regulation over what they can do with it.

[efsavage]

I think you mean "at what point in the future does your DNA get weaponized against everyone you're related to?"

I have not done these services because while I would be comfortable accepting the consequences in my remaining years, I have no idea what that would mean downstream for my living relatives, especially my son.

[toomuchtodo]

> When do you get declined for health insurance, or have jacked up premiums, because the insurance company bought a report from 23andMe that says you have a predisposition to expensive disease?

US federal law prohibits this [1].

[1] https://ghr.nlm.nih.gov/primer/testing/discrimination

[awb]

Now it does, but it might not be this way in the future. Health insurance companies fought tooth and nail about covering pre-existing conditions. This is just going 1-step prior.

They could easily frame this as "hey 80% of the population who are pretty healthy -- do you like paying extra high rates for this small population of people with a predisposition for really rare, complicated diseases? if we drop this unfair law we could lower your rates by X%".

Not saying it's right or ethical, but that I wouldn't be shocked if healthcare started lobbying hard to get this tweaked.

[wahern]

Laws against murder can change, too. So what?

The interesting thing about modern genetics is that it turns out everybody has some elevated risk for some disease or condition, which means the vast majority of people have an interest in prohibiting genetic discrimination.

[switz]

This might be considered a low quality comment, but I do think it's important to remember (and repeat): laws can change

[toomuchtodo]

Democracy requires constant vigilance.

[stanmancan]

The specific insurance example was just a theoretical example. I'm less concerned about someone trying to kill me, there are much easier ways to do that without targeting me based on my DNA!

[krageon]

Laws are purely a technicality. Especially with the US lobbying situation being the way it is, I don't think it's reasonable for anyone to expect that some bad thing heavily incentivised for won't happen just because it's not allowed now.

[ab_testing]

Well the companies don't need your DNA to decline you health insurance. If that condition appears and you go to the doctor to get it treated, the companies will cover it your first year but then raise your rates so high that you will be forced to find other companies.

[enriquepablo]

DNA is an anti-secret in the same way that digital rights management schemes are an anti-secret. DRM schemes only work through legal support; and in my opinion, legally protecting the secrecy of DNA is much more sensible (from a human pow, rather than from an economic growth pow) than legally protecting the secrets behind DRMs. People can be actively harmed, can be discriminated laboraly for example, if their DNA is public, as opposed to being devoid of some imaginary profits.

[guelo]

You might leave DNA everywhere but that does not tie it back to your identity. The secret is who's DNA it is, not the DNA itself. And that's the secret you pay to give to 23andMe when you sign up. Anywhere you leave your DNA can now be tied back to you. Even if you sign up with a fake identity (which is hard since you have to give them a credit card) 23andMe can find the DNA's relatives that are in their database and that can easily lead back to you.

[awb]

> I stopped thinking of my DNA as a secret when I realized how impossible it is to keep other people from having access to it.

The idea isn't 100% security or nothing, but to make it harder for the data to be exploited.

Lots of our personal data isn't a well kept secret, but I also don't give it to any company that asks for it, unlike my shoe size.

[wahern]

The harder it is to exploit the data, the harder it is to do basic genetic research. There's a fundamental dilemma there. If you don't want to share your data with research organizations, so be it. But calling other people suckers for voluntarily sharing their data means you'd rather live in a world where scientific and medical advancement are stunted.

That's like called open source contributors suckers, as it gives away their labor for free and makes them more susceptible to copyright and patent litigation. Maybe so, but the world is better off for it.

[awb]

I'm just saying don't share your DNA with everyone because you think it's an open secret.

Genetic research is important but pick the lab carefully.

[dillonmckay]

What is your email address and phone number?

[pstuart]

Email is in their contact link (with other stuff). Phone number is likely available with a bit of searching.

[thrwn_frthr_awy]

I think most people like the idea of getting their DNA analyzed and used to better the world. Where this breaks down for myself (and I assume others as well) is that all this is being done by an ad company. I could be just an old, jaded engineer, but I don't expect anything altruistic from an ad company.

[munchbunny]

I personally don't feel like I 'own' my genetic code and I'm quite happy to let scientists analyze it. However I understand while many people do not feel the same way.

I think the usual objection is not about losing ownership of your genetic code, but rather the privacy concerns that come with a company selling (access to) your literal source code to large companies with questionable intentions.

[georgyo]

I don't mind reaching being done on my DNA. Where 23andMe crosses lines is let people search the archives that still contain all the PII attached, such as police departments. That is a breach of trust.

[dahinds]

We've never done that.

https://www.23andme.com/transparency-report/

[rckoepke]

That's a great transparency report and I'm stoked to see that you actually appear to actively fight invalid legal requests for data.

According to your "Guide for Law Enforcement"[0] ... It's really just by luck/coincidence that you can even claim "We've never done that". Again - it's nice and mildly surprising to see that you haven't received an NSL yet. But I would bet $1,000 to charity that you will be legally forced/required/obligated to provide some PII/DNA data to law enforcement in the next 10 years.

A question: DNA samples, in a vacuum, don't seem particularly useful (even with a name/face attached). Does 23&Me aggregate medical histories to associate with DNA samples? If so, where do they get the medical data for specific individuals?

[0]: https://www.23andme.com/law-enforcement-guide/

[dahinds]

Customers can opt in to participate in our research program, and can then choose to provide additional information by i.e. filling out surveys.

[toomuchtodo]

You're thinking of GEDmatch, which was recently sold.

https://www.theatlantic.com/science/archive/2018/06/gedmatch...

https://www.nbcnews.com/news/us-news/new-owner-consumer-dna-...

[Analemma_]

You might start feeling differently when a new test is developed for existing genetic conditions that it turns out you have, and since your DNA is already public suddenly your health insurance premiums quintuple.

[dekhn]

Health insurers in the US are not allow to use this information in setting premiums. GINA is the law: https://www.genome.gov/about-genomics/policy-issues/Genetic-...

[cabaalis]

At least in the US, doing this would already be illegal.

https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...

[Real_S]

This law has interesting loopholes.

GINA does not apply to employers with fewer than 15 employees. It does not cover long-term care insurance, life insurance, or disability insurance, though some states have state laws that offer additional protections against genetic discrimination.

More info at:

https://www.genome.gov/about-genomics/policy-issues/Genetic-...

[clSTophEjUdRanu]

And then the dreaded military industrial police state gestapo drone strike you for not having white enough DNA?

This site is becoming insufferable with the paranoia worst-case-scenario circle jerking. I'm tired of hearing that the sky is falling because 23andme might profit from my DNA.

Calm down.

[clSTophEjUdRanu]

I agree. Your genetic code doesn't define you and I don't see it as private and to be protected. You leave it everywhere you go.

[pvaldes]

Saying that you do not own your unique genetic code is not much different than saying that your ears, eyes or kidneys are not yours, and might be helpful form others, so anybody could take them. Think about it.

[gpm]

There is a huge difference between physical objects and information.

[pvaldes]

Is not so easy. A DNA chain is a physical object and information at the same time. If you copy it, you are copying an object that could be used to "make a copy of you", and allowing "random company or people" to pick this info opens the door to several problems. i.e. Imagine that somebody stole your sperm somehow and use it to make a child and blackmail you asking for money each month for 18 years because you are "the father", so pay me. Boris Becker suffered a similar case.

In the same way synthetic fragments of your DNA could be left in a crime scenery. It would be enough to clone only the handful of good parts able to trigger a rape test, and we have machines that could be feed with your public data and programmed to do this. No need to say that this could put you in a jail for the rest of your life, or worse.

You need to protect yourself from a lot of posible evil uses of your unique code, past and future.

[gpm]

No one is using the physical objects for their research. They sequenced it (at your request) and are only using the information for research...

[pvaldes]

This information can be easily used to regenerate partially the physical object.

[TheAceOfHearts]

Are you saying you wouldn't download a car?

[mapcars]

Easily? Any proof that it had been done?

[tathougies]

Given that I literally gave half my genetic code to my daughter and she does not actually have any portion of my literal ears, kidneys, or eyes, I think you're overdramatizing.

[georgyo]

That's a bit of a strawman. I guess people shouldn't donate blood with your line of thinking. It's apparently the same as donating an organ that doesn't replenish itself.

[pvaldes]

Is a different situation.

The blood that you donate is not taken for making a profit by a private company. Is strongly regulated and do not depends of the income of external investors expecting a profit. At difference of a private company, nobody will buy the goverment tomorrow.

[georgyo]

Wrong, profit is made. It can go to for profit hospitals who charge for it, or at least the service if administrating it.

[clSTophEjUdRanu]

I like that. Yes profit is made and I see none of that profit but I don't care because the blood still ends up in another human who needs it.

[damon_c]

It is very different. Ears, eyes and kidneys are unique physical manifestations of the code.

The code is just information.