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.
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.
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
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.
Side note, I personally know one of the researchers on this paper and can vouch for his talent and credibility.
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 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 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.
US federal law prohibits this [1].
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 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.
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.
Genetic research is important but pick the lab carefully.
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.
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?
https://www.theatlantic.com/science/archive/2018/06/gedmatch...
https://www.nbcnews.com/news/us-news/new-owner-consumer-dna-...
https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
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-...
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.
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.
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.
The code is just information.