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23andMe licenses its own drug compound to Spanish firm Almirall

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Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#21

Post by Analemma_ »

BitwiseFool wrote: post #2

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.

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.

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#22

Post by dahinds »

georgyo wrote: post #11
BitwiseFool wrote: post #2

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.

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.

We've never done that.

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

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#23

Post by toomuchtodo »

georgyo wrote: post #11
BitwiseFool wrote: post #2

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.

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'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-...

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#24

Post by Hasz »

toomuchtodo wrote: post #20
Hasz wrote: post #13

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…

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 val…

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.

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#25

Post by enriquepablo »

dpiers wrote: post #15
BitwiseFool wrote: post #2

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.

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.

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.

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#26

Post by pvaldes »

gpm wrote: post #17
pvaldes wrote: post #14

Earlier quoted context omitted.

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 "th…

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

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

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#27

Post by sjg007 »

Hasz wrote: post #13

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…

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.

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#28

Post by toomuchtodo »

Hasz wrote: post #24
toomuchtodo wrote: post #20

Earlier quoted context omitted.

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 val…

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…

The availability of the drugs is the benefit, not whether they are provided to you free or not. Fix healthcare policy if you want that reality.

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#29

Post by LinuxBender »

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?

Re: 23andMe licenses its own drug compound to Spanish firm Almirall

#30

Post by rckoepke »

dahinds wrote: post #22
georgyo wrote: post #11

Earlier quoted context omitted.

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.

We've never done that. https://www.23andme.com/transparency-report/

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/

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