3 ms·

Agreed, and it's worse than not just getting your consent. They will likely make money and patents off of some of those DNA. There are many examples out there

Agreed, and it's worse than not just getting your consent. They will likely make money and patents off of some of those DNA. There are many examples out there of people doing that with cells from tissue, here is one from https://www.wipo.int/wipo_magazine/en/2006/05/article_0008.html https://www.wipo.int/wipo_magazine/en/2006/05/article_0008.h...: "Mr. John Moore suffered from hairy-cell leukemia. In 1976, Dr. David Golde of the University of California Medical Center, recommended that his spleen be removed in order to slow the progress of the disease. Mr. Moore signed a written consent form authorizing a splenectomy, and surgeons removed his spleen. Dr. Golde and his research assistants extracted tissue from the discarded spleen, having recognized its value for research to develop possible ant-cancer treatments. In the next three years they established a cell line from the extracted T-lymphocytes. Mr. Moore was not informed about the research work or the potential of the cell line. In 1984 Dr. Golde was granted US patent 4438032 on the cell line, which generated substantial revenue through commercial arrangements with two biotech firms."

dools 3y ago
"which generated substantial revenue through commercial arrangements with two biotech firms." Absent from this statement is that when biotech companies generate revenue from cancer treatments it's probably because they're treating cancer.
- throw__away7391 3y ago
  Exactly. If they were for example using genetic testing to set your insurance rates or something like this, that's dystopian. Doing medical research that leads to successful treatments for deadly diseases is hardly the sinister plot people seem to be implying it is.
  - dorfsmay 3y ago
    Are there clauses in 23andme type companies that they will never share your data with insurances? What if it got bought by an insurance?
    - throw__away7391 3y ago
      The OP wasn't even talking about 23andme, it was some doctors at a university.
    - ladberg 3y ago
      It's been illegal for insurance to use your DNA to discriminate against you or charge different costs since 2008 (see the Genetic Information Nondiscrimination Act). If that changes I'll regret having used 23andme, but so far I'm not worried.
      - dkural 3y ago
        GINA does not cover life insurance. That said, I agree with the overall point, research use does not cover insurance using this data charging someone different rates, and would be business-ending / corporate suicide for 23andMe.
  - suoduandao3 3y ago
    There is a culture of exploitation in the pharmaceutical industry - exhibit one being the opioid epidemic - that would justify default suspicion any time a major player gets more leverage.
- mc32 3y ago
  It would be the right thing to inform and share some tiny small part of revenues with these kinds of patients, even if not legally required. Of course I can see a problem with some being greedy and thus denying access to treatment to others.
gertrunde 3y ago
Very similar to the case of Henrietta Lacks. (https://en.wikipedia.org/wiki/Henrietta_Lacks https://en.wikipedia.org/wiki/Henrietta_Lacks)
abandonliberty 3y ago
It's great that we're getting better at consent, but this concept makes no sense. If I throw away a can of paint, then someone finds it and paints a masterpiece, I should have some rights over the painting?

dools 3y ago

"which generated substantial revenue through commercial arrangements with two biotech firms." Absent from this statement is that when biotech companies generate revenue from cancer treatments it's probably because they're treating cancer.

throw__away7391 3y ago
Exactly. If they were for example using genetic testing to set your insurance rates or something like this, that's dystopian. Doing medical research that leads to successful treatments for deadly diseases is hardly the sinister plot people seem to be implying it is.
- dorfsmay 3y ago
  Are there clauses in 23andme type companies that they will never share your data with insurances? What if it got bought by an insurance?
  - throw__away7391 3y ago
    The OP wasn't even talking about 23andme, it was some doctors at a university.
  - ladberg 3y ago
    It's been illegal for insurance to use your DNA to discriminate against you or charge different costs since 2008 (see the Genetic Information Nondiscrimination Act). If that changes I'll regret having used 23andme, but so far I'm not worried.
    - dkural 3y ago
      GINA does not cover life insurance. That said, I agree with the overall point, research use does not cover insurance using this data charging someone different rates, and would be business-ending / corporate suicide for 23andMe.
- suoduandao3 3y ago
  There is a culture of exploitation in the pharmaceutical industry - exhibit one being the opioid epidemic - that would justify default suspicion any time a major player gets more leverage.
mc32 3y ago
It would be the right thing to inform and share some tiny small part of revenues with these kinds of patients, even if not legally required. Of course I can see a problem with some being greedy and thus denying access to treatment to others.

gertrunde 3y ago

Very similar to the case of Henrietta Lacks. (https://en.wikipedia.org/wiki/Henrietta_Lacks https://en.wikipedia.org/wiki/Henrietta_Lacks)

abandonliberty 3y ago

It's great that we're getting better at consent, but this concept makes no sense. If I throw away a can of paint, then someone finds it and paints a masterpiece, I should have some rights over the painting?