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
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.
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.
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.
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...
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.
The code is just information.
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.
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.
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.
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.
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.
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.
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.
geneinfosec.com
