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US companies have been harvesting DNA data for years without permission? Link? Companies like 23andme have people paying them to research their DNA with permiss

US companies have been harvesting DNA data for years without permission? Link? Companies like 23andme have people paying them to research their DNA with permission.

mercora 5y ago
i wonder how much information is gained about me if a close relative decides this is a good idea to do...
- NeutronStar 5y ago
  My twin did it. So much for privacy.
tracedddd 5y ago
I don’t think most people understand what they are agreeing to with regards to data sharing or mining. Ethically, burying important aspects in a ToS or privacy policy that you know most people will never read seems pretty wrong, while it may be legal.
Joool 5y ago
As others have stated, I do not think that people understand what they sign in the TOS of these companies. In this case the data was actually collected and analyzed with consent (as stated in the article).
tzs 5y ago
I don't know about DNA specifically, but blood that is donated to blood banks that ends up not being needed is sometimes used for research. There's probably something about this somewhere in the fine print on something they signed without reading, but most donors aren't aware of it. There has been some controversy over that because there have been lucrative commercial drugs derived from research using such blood, and some feel that the donors should be given a cut of the profits.
- kube-system 5y ago
  The word donating seems to be key in those scenarios. I don’t expect to tell anyone how to use my old pair of pants after I donate them to goodwill.
  - nindalf 5y ago
    Donations are made with a purpose in mind. If I donate to a charity that promised to buy mosquito nets with my money, I’d be dismayed if it turned out all the money was spent on hookers and blackjack. So yes, while you might not expect to tell anyone how to use your donation, I do. Most people do. Unless they managed to sneak the hooker clause into the fine print and I missed it. In which case, well done, carry on.
    - ivanhoe 5y ago
      Futurama references never get old :)
m-ee 5y ago
In California there is opt out genetic testing for newborns right after birth. Unless you opt out you get free testing for genetic disease but the samples are stored indefinitely and monetized by the state EDIT: I remembered wrong, parents are charged for the test and then the state monetizes their baby’s DNA anyway. https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/ https://www.cbsnews.com/news/california-biobank-dna-babies-w...
ivanhoe 5y ago
It's all the same scam - you send them your dna to do some fun test, like see what % of neanderthals genes you have or how much Scottish you are (which is btw a total scam because error margins on these tests are usually huge and thus results are pretty meaningless) and your dna ends up in their database forever, and they can data-mine and cross-analyze and sell it as they wish. Of course they have good lawyers and EULAs and it's all legally covered, but it's just as immoral.

US companies have been harvesting DNA data for years without permission? Link? Companies like 23andme have people paying them to research their DNA with permission.

mercora 5y ago

i wonder how much information is gained about me if a close relative decides this is a good idea to do...

NeutronStar 5y ago
My twin did it. So much for privacy.

tracedddd 5y ago

I don’t think most people understand what they are agreeing to with regards to data sharing or mining. Ethically, burying important aspects in a ToS or privacy policy that you know most people will never read seems pretty wrong, while it may be legal.

Joool 5y ago

As others have stated, I do not think that people understand what they sign in the TOS of these companies. In this case the data was actually collected and analyzed with consent (as stated in the article).

tzs 5y ago

I don't know about DNA specifically, but blood that is donated to blood banks that ends up not being needed is sometimes used for research. There's probably something about this somewhere in the fine print on something they signed without reading, but most donors aren't aware of it. There has been some controversy over that because there have been lucrative commercial drugs derived from research using such blood, and some feel that the donors should be given a cut of the profits.

kube-system 5y ago
The word donating seems to be key in those scenarios. I don’t expect to tell anyone how to use my old pair of pants after I donate them to goodwill.
- nindalf 5y ago
  Donations are made with a purpose in mind. If I donate to a charity that promised to buy mosquito nets with my money, I’d be dismayed if it turned out all the money was spent on hookers and blackjack. So yes, while you might not expect to tell anyone how to use your donation, I do. Most people do. Unless they managed to sneak the hooker clause into the fine print and I missed it. In which case, well done, carry on.
  - ivanhoe 5y ago
    Futurama references never get old :)

m-ee 5y ago

In California there is opt out genetic testing for newborns right after birth. Unless you opt out you get free testing for genetic disease but the samples are stored indefinitely and monetized by the state EDIT: I remembered wrong, parents are charged for the test and then the state monetizes their baby’s DNA anyway. https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/ https://www.cbsnews.com/news/california-biobank-dna-babies-w...

ivanhoe 5y ago

It's all the same scam - you send them your dna to do some fun test, like see what % of neanderthals genes you have or how much Scottish you are (which is btw a total scam because error margins on these tests are usually huge and thus results are pretty meaningless) and your dna ends up in their database forever, and they can data-mine and cross-analyze and sell it as they wish. Of course they have good lawyers and EULAs and it's all legally covered, but it's just as immoral.