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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

#71

Post by awb »

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.

> 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.

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.

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

#72

Post by dillonmckay »

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.

What is your email address and phone number?

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

#73

Post by Hasz »

dahinds wrote: post #66
Hasz wrote: post #35

Earlier quoted context omitted.

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…

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…

From the privacy policy, effective jan 2020.

From the Privacy Highlight:

"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.

I am no fan.

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

#74

Post by pstuart »

dillonmckay wrote: post #72
dpiers wrote: post #15

Earlier quoted context omitted.

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.

What is your email address and phone number?

Email is in their contact link (with other stuff). Phone number is likely available with a bit of searching.

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

#75

Post by ab_testing »

stanmancan wrote: post #36
dpiers wrote: post #15

Earlier quoted context omitted.

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 th…

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.

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

#76

Post by clSTophEjUdRanu »

georgyo wrote: post #38
pvaldes wrote: post #33

Earlier quoted context omitted.

Is a different situation. 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.

Wrong, profit is made. It can go to for profit hospitals who charge for it, or at least the service if administrating it.

I like that. Yes profit is made and I see none of that profit but I don't care because the blood still ends up in another human who needs it.

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

#78

Post by wahern »

awb wrote: post #70
toomuchtodo wrote: post #46

Earlier quoted context omitted.

> 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? US federal law prohibits this [1]. [1] https://ghr.nlm.nih.gov/primer/testing/discrimination

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…

Laws against murder can change, too. So what?

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.

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

#79

Post by wahern »

awb wrote: post #71
dpiers wrote: post #15

Earlier quoted context omitted.

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 stopped thinking of my DNA as a secret when I realized how impossible it is to keep other people from having access to 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.

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.

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

#80

Post by mateo1 »

klipt wrote: post #58
Real_S wrote: post #55

Earlier quoted context omitted.

Here is a study on the genetics of political belief[0]. In summary, there is a large genetic component. [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038932/

Causal or just correlation? 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.

You imply that they care about this. They don't.
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