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.
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.
>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
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.
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.
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.
> 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?
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
Somewhat off topic: Has anyone yet made a device that is entirely self contained and can do a basic analysis of DNA without sending or fetching data from anywhere? In other words, 100% air-gapped and my DNA and data stay on the portable device. If not, approx. how many years until such a device might exist?
Unfortunately, there still is no such thing as "basic" analysis of DNA. :)Ewan Birney has a great quote about this:
Sequencing, analysing and interpreting genomes is ‘routine’ in the same way the US Navy ‘routinely’ lands planes on aircraft carriers. It might happen regularly by well trained crew with the right equipment but it is not an easy thing to do.
https://twitter.com/ewanbirney/status/1040144488948281344
That said, an Oxford Nanopore sequencer + a laptop is probably the closest thing to what you want.
This is actually promising. Obviously my mental comparison is not appropriate, but I recall diagnostic equipment for vehicles that cost $500k+ and took up a half of a bay in the shop. Now I can do the same diagnostics with a hand-held device that is $95. That was a 20 year gap. If the same evolution occurs with genetic equipment, it will meet my needs. In 15 to 20 years, I want to acquire a copy of Dr. Sinclairs work on the yamanaka factors and reversing cell age. I will need equipment to see DNA, epigenetic methylation and more.
Seems like something that will happen eventually in the next decade or three. I can imagine a business model where instead of collecting a vial of saliva, a company rents you a fully automated desktop DNA sequencer. The data can live on your computer and be compared to new SNP's as they are found. It's a long way off, and I understand full sequencing is significantly more difficult than SNP identification, but the tech seems possible, even probably. The business model seems less probable. People just don't care that much about their data.
Also, it doesn't matter due to network effects. In the GEDmatch case, the serial killer had never had his DNA sequenced - just his relatives. DNA privacy is already gone even if you opt-out of everything. You might as well get some personal benefit out of it. Or maybe this is a perverse opposite of vaccination. If enough people get vaccinated, you get herd immunity. If enough people stop sending data to DNA companies, you get herd privacy. Once enough people in one generation send in for DNA tests, even if everyone stopped, wouldn't future generations still be relatively targetable? I mean I'd imagine you could find me by comparing to my grandparents DNA.
We are working on encrypting DNA molecules in a test-tube so that genetic information is protected before it ever touches anything electronic. Molecular encryption will be similar to an air-gap.
What a excellent, albeit strange, model. People pay you to analyze their valuable info, which you then aggregate and use to develop a drug and sell to others. It's almost exactly like trash -- people give you their valuable commodity (pay you to take it, in some cases!), you put it in a pile and then sell the mining rights down the line.
If my data is going to be used to develop drug royalties, I want a % cut. Not a free test, certainly not a test that costs $100. I realize I will never get it, but I can hope.
Drugs, when you analyze the successes, are unfathomably profitable. The R&D is horrifically expensive, but the end product is immensely valuable. 23andMe is in a bit of a race to pick all the easy fruit from the genetic tree to develop into drugs. All the upside, a much easier R&D path compared to the conventional "throw shit at the wall until it sticks" style.
That makes zero sense, the effort is in deriving insights in producing something tangible - drugs. That's like saying you want a cut from all of Google's revenue because you use their search engine, or you want a cut from any service because they use the analytics from your use to improve their product.
That's exactly what I'm saying. I recognize it's not practical, but that doesn't mean I'm going to change the criterion -- it's also why I chose not to upload data to 23andMe.
In Google and everyone else's case, I would argue it's a bit different. Google remunerates me with the best search engine in the world, excellent free email, etc. Other services improve the product, which I (generally) reap the benefits of.
On the other hand, your genetics are what they are -- I don't believe 23andMe is sending every participant a coupon for this new drug, although I might be wrong. Instead, all you get is a small sample of the 600k SNPs available, some shaky genetic inferences, and tabloid level ethnic data. You give up valuable data with huge upside for analysis of questionable integrity and limited actionability.
23andme provides a service that improves as a result of our research program. Many 23andMe reports are now based entirely on 23andMe research. There's room to argue about the value of the services we provide, but I think the science is pretty solid. And 23andMe research is generally very well regarded in the scientific community; we've contributed to >100 peer reviewed publications and have dozens of active academic collaborations. There's no other genetic testing company with anything remotely comparable to our research program. Actionability is a really hard problem but I'd absolutely stand behind the integrity of what we do. In any case, no one is obligated to participate in our research program.
"We will not share your data with any public databases "
From the full policy:
"We may share some or all of your Personal Information with other companies under common ownership or control of 23andMe, which may include our subsidiaries, our corporate parent, or any other subsidiaries owned by our corporate parent in order to provide you better service and improve user experience"
I'm no lawyer, but it seems like the key word is public. Considering 23andMe reserves the right to share this data with its family of companies, and I'm unable to opt-out, it seems like all research is not totally avoidable. I won't comment any more about the validity of the science, it's not my field. However, I couldn't find any data about the error rate of the tests, which is surely non-zero. I'd love to know what SNPs they choose to evaluate, how they collect the phenotype data (the most valuable part of all!), etc.
In short, consumers give up huge troves of info, and pay for the privilege of doing so. What's more, the actual business model is turning this into drugs, of which they receive nothing in return. Most people expect a fun way to see they're 4% $ethnicity, not realizing the value in the data they freely give up to a private company.
> If my data is going to be used to develop drug royalties, I want a % cut.
For those saying this idea is unrealistic, I was at an accelerator in Cambridge a while back and met some folks working on a version of 23andMe that, in my opinion, mirrors what the Brave browser has done to ads.
You can opt into your data being aggregated, anonymized and used by pharmaceutical companies, and you'll be given a percentage of what they sell that data for (IIRC, it was north of 20% and below 50%).
As industries become more crowded and there's an increasing number of services for a consumer to choose from, these sort of arrangements will likely become more common.
It's really not that strange. No different than people paying $40k-$130k for Tesla vehicles that send data back with no compensation to help them improve their autonomy efforts, or users of social media products giving their content away for free (Facebook, Insta, Twitter, Reddit) thereby creating the platform's value. Lots of good business to be had taking something of little value and then selling for a greater value in some larger aggregate (which is even as low tech as your local metal recycling business; you want a cut of the revenue from the aircraft your aluminum ends up in?).
The consumer benefit is that it's only $100-200 for a 23andme selective sequence, versus the $1000 for a full sequencing someone like Veritas charges. It's brilliant that 23andme can turn health and ancestry curiosity into a pharma business, and they should be commended for their work.
Yeah, don't really like that either. At least with the other services, the user arguably sees an improvement -- better community, better car, whatever. Your genetics are what they are; I doubt (but might be wrong!) 23andMe is sending out free drugs to all the participants.
I'm not sure how Veritas does it, but 23andMe only takes a few of the 600K SNPs available to analyze. PBS had a good bit on it, you can find it on YouTube. They release your raw data, but make no guarantee of accuracy, which is crazy considering some people take drastic, irreversible medical action (double mastectomy, hysterectomy for the BRCA mutation) based on the results. I'm sure they disclaim that, but crazy nonetheless.
More like ads. The entire internet is nowadays powered by free data. Soon drug R&D will be similar. OTOH, that's a good thing, i would like to see the industry growing fast. At some not too distant point, people should start being compensated for participating in DNA studies, under rules no different than any other medical donation really.
I think there is a startup out there with that idea. Basically they sequence you but you can choose what analyses get run on your data.. and can get paid to have your data analyzed.
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.