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I don't want to spread FUD but why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model fo

I don't want to spread FUD but why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? (The founder of 23AndMe is the ex-wife of Google founder). Even worse, people are actually PAYING quite a lot to get the privilege of having that company playing with your most private data. This field needs to be heavily regulated. In 20 years we will be able to extract all type of crazy information from DNA and it might be our biggest liability if it is shared across private companies. This will truly be the dystopian future, in which every business will make a decision based on your public DNA profile. As everything in Silicon Valley, they are hiding behind the fact that it can be used to make "The world a better place" and cure sone diseases. It should be clear what the end goal is though.

sarabande 8y ago
> why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? (The founder of 23AndMe is the ex-wife of Google founder). I don't think a former personal relationship indicates the respective companies operate the same way. > Even worse, people are actually PAYING quite a lot to get the privilege of having that company playing with your most private data. Paying for something is a good thing. Historically in the Valley, companies for whose services you do not pay money tend to abuse your data as they use it as a source to earn money. I think in general, companies take more care of your data if the contract is explicit: I pay you money for this service, and expect corresponding controls over my privacy. Now, I'm not saying it's the case at all companies, just that I think the trend you mention is reversed. > This field needs to be heavily regulated. I agree. We absolutely should have better laws, and people should be able to delete their data without question (and not have remnants stored). In the EU, that wouldn't fly. Disclaimer: I worked at 23andMe.
- mattmanser 8y ago
  Fair enough, but in another thread 23andme have responded to someone and said they will never delete their DNA data, even if requested. And claimed the laws are the ones preventing them from doing that.
Shank 8y ago
> In 20 years we will be able to extract all type of crazy information from DNA and it might be our biggest liability if it is shared across private companies. This will truly be the dystopian future, in which every business will make a decision based on your public DNA profile. I really doubt this. I've been genotyped by 23andMe and the most interesting information I've seen from their health reports are a handful of disease probabilities and some fairly useless-to-me traits (like, for instance, a probabilistic view of my hair color). Even if you jump into the fray with something like Promethease or look at data on SNPedia, each SNP only has a handful of studies and there's little to no research on hundreds of thousands of SNPs. Only a few sets have been analyzed for specific purposes like Alzheimer's and rare diseases, and those are indeed rare. Science doesn't advance like the technology industry. It takes slow, methodical research to point to anything super conclusive. If we wanted a dystopia where job aptitude was determined by DNA, for example, we would need hundreds of studies and conclusive evidence that some genetic data indicates a very good match and not just a hunch. That research has to come from somewhere, continually be reproduced, and undergo the scientific process. That's all stuff that has to be paid for, which is something not a lot of people are willing to do. > why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? It's more of a curiosity thing. I get a more complete view of myself, and we potentially help advance research in medicine and diseases. It's symbiotic.
- krageon 8y ago
  For stuff like this to be used by most people (that is to say dystopically and objectively wrong, like in a hiring process) we definitely don't need any sort of rigorous research. They already have those Myers-Briggs tests that have no actual basis in reality, not to mention the kinds of hoops you jump through to get your CV read that make no sense. The trouble is not (as far as I'm concerned) that this information will be used by competent, levelheaded scientists. The trouble is that everyone else might start using it.
- a_136_chiffa 8y ago
  > I really doubt this. I've been genotyped by 23andMe and the most interesting information I've seen from their health reports are a handful of disease probabilities and some fairly useless-to-me traits (like, for instance, a probabilistic view of my hair color). This is about to change. The academic research going on is immense and GWAS studies coming in the 10 years will be characterizing everything - from your chance to develop cancer, to car crash or dropping out of school. You need to be aware of what analyses of your data is being shown to you compared to what are possible and can be run in the background. It's a little bit like the Facebook telling things about you in ~2011 (your best friend is X) and then Cambridge Analytica pouring on it five years later to serve you ads that would best affect your voting pattern.
maxerickson 8y ago
Maintaining the privacy of your own personal data is a really fragile model for resisting a dystopian society. I mean, it doesn't take very long before it's worth collecting a sample without your permission.
- ironjunkie 8y ago
  I agree, and DNA is actually very easy to collect without the owner's consent. How can this be solved though? A model where DNA is only shared if you want to, and where you fully remain in control of your data.
  - SmellyGeekBoy 8y ago
    You could have your genome sequenced and then copyright it?
teekno 8y ago
> I don't want to spread FUD but why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? My father has Parkinson's and provided his DNA to 23AndMe using one of their free kits [1]. Companies like this represent a chance of finding a cure. There are certainly concerns with companies accumulating large amounts of genetic data, but huge data sets are required for deep learning and other AI methodologies. Sharing one's genetic data, and allowing other companies to form partnerships to gain access to that data, will likely represent a key step in identifying the cause (and hopefully potential cures) for such diseases. [1] https://www.23andme.com/pd/ https://www.23andme.com/pd/
- ironjunkie 8y ago
  There are huge benefits, I agree with you. My concern is that 23AndMe is a for-profit company advertising the huge benefits in order to push a for-profit agenda. What I would like to see is some tighter regulations around all of this: No sharing of specific data, complete anonymization of all the data sets would be a good start
  - teekno 8y ago
    I'm under the impression that you need to opt-in to any research studies that would use your genetic info (though I'm not 100% sure).
therealdrag0 8y ago
Why should my DNA be private? I don't care at all about my DNA.
- albertgoeswoof 8y ago
  You will if you cant get insurance / welfare / a job / a loan because your DNA suggests that you are statistically a potential liability
  - kalleboo 8y ago
    Sure but what if I don't live in the corporatist dystopia that is the USA?
    - a_136_chiffa 8y ago
      Whether you like it or not, US tends to lead the world. Tools developed here tend to implanted elsewhere, even if they get regulated after about a decade.
      - kalleboo 8y ago
        Generally sure, but in other ways the US always lags the world - elsewhere you don't have to worry about being denied insurance, welfare systems are far more comprehensive, and privacy laws tend to actually get implemented (like the much-maligned GDPR)
- ironjunkie 8y ago
  Maybe today, but you need to imagine in 5-10 or 20 years when we will be able to statistically decide if you are a lier, lazy, strong etc etc. A lot of things remain a mystery in our body, especially in our brain. I'm definitely not comfortable giving a perfect map of my body/brain to a private for-profit company in Silicon Valley.
sschueller 8y ago
In theory they could make a patent for some medications based on your gnome. - So you paid to give them your data - They patent something that in essence belongs to you - You need that cure you need to pay them again.
CamelCaseName 8y ago
>why would ANYONE in their right mind give their DNA... I've been thinking about this a lot since you posted yesterday and I think you're doing yourself, your relatives, and your whole ethnicity a favor IF your data is used to build better drugs. There's a huge issue with drug testing skewing against certain ethnicities, which is why some drugs are not effective for certain people. This seems like a good solution.

sarabande 8y ago

> why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? (The founder of 23AndMe is the ex-wife of Google founder). I don't think a former personal relationship indicates the respective companies operate the same way. > Even worse, people are actually PAYING quite a lot to get the privilege of having that company playing with your most private data. Paying for something is a good thing. Historically in the Valley, companies for whose services you do not pay money tend to abuse your data as they use it as a source to earn money. I think in general, companies take more care of your data if the contract is explicit: I pay you money for this service, and expect corresponding controls over my privacy. Now, I'm not saying it's the case at all companies, just that I think the trend you mention is reversed. > This field needs to be heavily regulated. I agree. We absolutely should have better laws, and people should be able to delete their data without question (and not have remnants stored). In the EU, that wouldn't fly. Disclaimer: I worked at 23andMe.

mattmanser 8y ago
Fair enough, but in another thread 23andme have responded to someone and said they will never delete their DNA data, even if requested. And claimed the laws are the ones preventing them from doing that.

Shank 8y ago

> In 20 years we will be able to extract all type of crazy information from DNA and it might be our biggest liability if it is shared across private companies. This will truly be the dystopian future, in which every business will make a decision based on your public DNA profile. I really doubt this. I've been genotyped by 23andMe and the most interesting information I've seen from their health reports are a handful of disease probabilities and some fairly useless-to-me traits (like, for instance, a probabilistic view of my hair color). Even if you jump into the fray with something like Promethease or look at data on SNPedia, each SNP only has a handful of studies and there's little to no research on hundreds of thousands of SNPs. Only a few sets have been analyzed for specific purposes like Alzheimer's and rare diseases, and those are indeed rare. Science doesn't advance like the technology industry. It takes slow, methodical research to point to anything super conclusive. If we wanted a dystopia where job aptitude was determined by DNA, for example, we would need hundreds of studies and conclusive evidence that some genetic data indicates a very good match and not just a hunch. That research has to come from somewhere, continually be reproduced, and undergo the scientific process. That's all stuff that has to be paid for, which is something not a lot of people are willing to do. > why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? It's more of a curiosity thing. I get a more complete view of myself, and we potentially help advance research in medicine and diseases. It's symbiotic.

krageon 8y ago
For stuff like this to be used by most people (that is to say dystopically and objectively wrong, like in a hiring process) we definitely don't need any sort of rigorous research. They already have those Myers-Briggs tests that have no actual basis in reality, not to mention the kinds of hoops you jump through to get your CV read that make no sense. The trouble is not (as far as I'm concerned) that this information will be used by competent, levelheaded scientists. The trouble is that everyone else might start using it.
a_136_chiffa 8y ago
> I really doubt this. I've been genotyped by 23andMe and the most interesting information I've seen from their health reports are a handful of disease probabilities and some fairly useless-to-me traits (like, for instance, a probabilistic view of my hair color). This is about to change. The academic research going on is immense and GWAS studies coming in the 10 years will be characterizing everything - from your chance to develop cancer, to car crash or dropping out of school. You need to be aware of what analyses of your data is being shown to you compared to what are possible and can be run in the background. It's a little bit like the Facebook telling things about you in ~2011 (your best friend is X) and then Cambridge Analytica pouring on it five years later to serve you ads that would best affect your voting pattern.

maxerickson 8y ago

Maintaining the privacy of your own personal data is a really fragile model for resisting a dystopian society. I mean, it doesn't take very long before it's worth collecting a sample without your permission.

ironjunkie 8y ago
I agree, and DNA is actually very easy to collect without the owner's consent. How can this be solved though? A model where DNA is only shared if you want to, and where you fully remain in control of your data.
- SmellyGeekBoy 8y ago
  You could have your genome sequenced and then copyright it?

teekno 8y ago

> I don't want to spread FUD but why would ANYONE in their right mind give their DNA to a company in Silicon Valley that is explicitely using Google as a model for Data privacy ? My father has Parkinson's and provided his DNA to 23AndMe using one of their free kits [1]. Companies like this represent a chance of finding a cure. There are certainly concerns with companies accumulating large amounts of genetic data, but huge data sets are required for deep learning and other AI methodologies. Sharing one's genetic data, and allowing other companies to form partnerships to gain access to that data, will likely represent a key step in identifying the cause (and hopefully potential cures) for such diseases. [1] https://www.23andme.com/pd/ https://www.23andme.com/pd/

ironjunkie 8y ago
There are huge benefits, I agree with you. My concern is that 23AndMe is a for-profit company advertising the huge benefits in order to push a for-profit agenda. What I would like to see is some tighter regulations around all of this: No sharing of specific data, complete anonymization of all the data sets would be a good start
- teekno 8y ago
  I'm under the impression that you need to opt-in to any research studies that would use your genetic info (though I'm not 100% sure).

therealdrag0 8y ago

Why should my DNA be private? I don't care at all about my DNA.

albertgoeswoof 8y ago
You will if you cant get insurance / welfare / a job / a loan because your DNA suggests that you are statistically a potential liability
- kalleboo 8y ago
  Sure but what if I don't live in the corporatist dystopia that is the USA?
  - a_136_chiffa 8y ago
    Whether you like it or not, US tends to lead the world. Tools developed here tend to implanted elsewhere, even if they get regulated after about a decade.
    - kalleboo 8y ago
      Generally sure, but in other ways the US always lags the world - elsewhere you don't have to worry about being denied insurance, welfare systems are far more comprehensive, and privacy laws tend to actually get implemented (like the much-maligned GDPR)
ironjunkie 8y ago
Maybe today, but you need to imagine in 5-10 or 20 years when we will be able to statistically decide if you are a lier, lazy, strong etc etc. A lot of things remain a mystery in our body, especially in our brain. I'm definitely not comfortable giving a perfect map of my body/brain to a private for-profit company in Silicon Valley.

sschueller 8y ago

In theory they could make a patent for some medications based on your gnome. - So you paid to give them your data - They patent something that in essence belongs to you - You need that cure you need to pay them again.

CamelCaseName 8y ago

>why would ANYONE in their right mind give their DNA... I've been thinking about this a lot since you posted yesterday and I think you're doing yourself, your relatives, and your whole ethnicity a favor IF your data is used to build better drugs. There's a huge issue with drug testing skewing against certain ethnicities, which is why some drugs are not effective for certain people. This seems like a good solution.