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.
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.
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.
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.
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.
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.
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.
> 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.
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.
BitwiseFool|6 years ago
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|6 years ago
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.
dpiers|6 years ago
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.
thrwn_frthr_awy|6 years ago
munchbunny|6 years ago
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|6 years ago
Analemma_|6 years ago
clSTophEjUdRanu|6 years ago
pvaldes|6 years ago
LinuxBender|6 years ago
chrisamiller|6 years ago
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.
Beefin|6 years ago
Real_S|6 years ago
geneinfosec.com
Hasz|6 years ago
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.
Beefin|6 years ago
alehul|6 years ago
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.
toomuchtodo|6 years ago
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.
unknown|6 years ago
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buboard|6 years ago
sjg007|6 years ago
mrfusion|6 years ago
neonate|6 years ago
buboard|6 years ago
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unknown|6 years ago
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unknown|6 years ago
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starpilot|6 years ago