4 ms·

> Ostensibly, the genetic information is going to be used for “research and development of innovative new medicines and potential cures.” Pure evil. Is there

> Ostensibly, the genetic information is going to be used for “research and development of innovative new medicines and potential cures.” Pure evil. Is there an alternative where I can get my DNA analyzed for free while still granting access to it to scientific research while trusting that the DNA won't be leaked in a couple of years?

efoto 8y ago
(ready to get down-voted) why would I want to opt out if somebody uses my anonymized DNA to try discovering a potentially life-saving drug?
- dragonsky 8y ago
  There is no such thing as anonymous DNA. Due to the nature of DNA your anonymity is directly reliant upon the anonymity of everybody you are related to, with a drop in accuracy proportional to the distance of the relationship. Your DNA may be out there without any link to you. However if your brothers DNA is also out there but is however linked to him, then by comparison the fact that your DNA is a sibling of his, is easily determined. In fact this is the whole point of the current "Find you ancestors" craze.
  - walterbell 8y ago
    DNA is also being used to establish nationality, https://news.vice.com/en_ca/article/wjkxmy/canada-is-using-ancestry-dna-websites-to-help-it-deport-people https://news.vice.com/en_ca/article/wjkxmy/canada-is-using-a...
- maxioatic 8y ago
  Agreed. However, the NIH, as mentioned in the article, is trying to accomplish similar goals. I would think though, that the private corporation compared to a non-profit government agency is going to be faster at finding a solution given the same data. This will of course come with a $$$ cost. Naively this sounds alright to me.
  - aaavl2821 8y ago
    You aren't naive, almost all medicines require for profit funding to get to market. In 2017 92% of new approved drugs were owned by companies. Non profits don't have the money or infrastructure
- krageon 8y ago
  Anonymization doesn't work in practice (people are bad at it and don't understand how to do it), and it definitely doesn't work on DNA. So in order of claims: You shouldn't trust it was done well and if someone claims that they did this for your DNA they are lying. Why wouldn't you want to opt-out from having some of your most sensitive information used by someone who is willing to lie to get access to it? The alternative to "they are lying" is "they are too incompetent to make the claim" and I'm honestly not sure which is more worrying. You can take your pick, they're both more or less equally terrifying.
- hrktb 8y ago
  Could your question be generalised as “why would I want to opt out of X if there is any potential to help beneficial Y” ? For me the issue is not that Y will be good, more that there are countless of potential research outside of Y that can’t be restricted and I wouldn’t agree with. 23andme for instance is not saying that their data will only be used for research that most people agree with. There is no “don’t be evil” mantra they harbor. And by definition there can’t be anything that 100% agree with and they can’t ask everyone for every use. In that respect I think people should be able to contribute their data themselves to Y, without a man in the middle choosing where else the data should go. Short of that not contributing anything seems a sensible position.
djajshgsjja 8y ago
I don’t get it, you just described that same application as pure evil?
aaavl2821 8y ago
What kind of organization would you trust with your genetic data? The U.K. Biobank, one of the largest government led sequencing efforts, uses a big pharma company called regeneron to sequence many of the patients that participate. Nearly all FDA approved medicines are funded by private pharma companies, so any innovation that becomes a medicine will likely pass through pharma s hands
raonyguimaraes 8y ago
Hi there, just wanted to mention I developed a free and open source tool for doing genome analysis called Mendel,MD https://mendelmd.org https://mendelmd.org

efoto 8y ago

(ready to get down-voted) why would I want to opt out if somebody uses my anonymized DNA to try discovering a potentially life-saving drug?

dragonsky 8y ago
There is no such thing as anonymous DNA. Due to the nature of DNA your anonymity is directly reliant upon the anonymity of everybody you are related to, with a drop in accuracy proportional to the distance of the relationship. Your DNA may be out there without any link to you. However if your brothers DNA is also out there but is however linked to him, then by comparison the fact that your DNA is a sibling of his, is easily determined. In fact this is the whole point of the current "Find you ancestors" craze.
- walterbell 8y ago
  DNA is also being used to establish nationality, https://news.vice.com/en_ca/article/wjkxmy/canada-is-using-ancestry-dna-websites-to-help-it-deport-people https://news.vice.com/en_ca/article/wjkxmy/canada-is-using-a...
maxioatic 8y ago
Agreed. However, the NIH, as mentioned in the article, is trying to accomplish similar goals. I would think though, that the private corporation compared to a non-profit government agency is going to be faster at finding a solution given the same data. This will of course come with a $$$ cost. Naively this sounds alright to me.
- aaavl2821 8y ago
  You aren't naive, almost all medicines require for profit funding to get to market. In 2017 92% of new approved drugs were owned by companies. Non profits don't have the money or infrastructure
krageon 8y ago
Anonymization doesn't work in practice (people are bad at it and don't understand how to do it), and it definitely doesn't work on DNA. So in order of claims: You shouldn't trust it was done well and if someone claims that they did this for your DNA they are lying. Why wouldn't you want to opt-out from having some of your most sensitive information used by someone who is willing to lie to get access to it? The alternative to "they are lying" is "they are too incompetent to make the claim" and I'm honestly not sure which is more worrying. You can take your pick, they're both more or less equally terrifying.
hrktb 8y ago
Could your question be generalised as “why would I want to opt out of X if there is any potential to help beneficial Y” ? For me the issue is not that Y will be good, more that there are countless of potential research outside of Y that can’t be restricted and I wouldn’t agree with. 23andme for instance is not saying that their data will only be used for research that most people agree with. There is no “don’t be evil” mantra they harbor. And by definition there can’t be anything that 100% agree with and they can’t ask everyone for every use. In that respect I think people should be able to contribute their data themselves to Y, without a man in the middle choosing where else the data should go. Short of that not contributing anything seems a sensible position.

djajshgsjja 8y ago

I don’t get it, you just described that same application as pure evil?

aaavl2821 8y ago

What kind of organization would you trust with your genetic data? The U.K. Biobank, one of the largest government led sequencing efforts, uses a big pharma company called regeneron to sequence many of the patients that participate. Nearly all FDA approved medicines are funded by private pharma companies, so any innovation that becomes a medicine will likely pass through pharma s hands

raonyguimaraes 8y ago

Hi there, just wanted to mention I developed a free and open source tool for doing genome analysis called Mendel,MD https://mendelmd.org https://mendelmd.org