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Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by Communitivity on Tuesday October 31, 2023 @07:13AM (#38082989)
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.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."

Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by dools on Tuesday October 31, 2023 @07:17AM (#38083019)
"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.

Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by throw__away7391 on Tuesday October 31, 2023 @07:51AM (#38083355)
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.
Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by suoduandao3 on Tuesday October 31, 2023 @08:12AM (#38083561)
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.
Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by dorfsmay on Tuesday October 31, 2023 @08:07AM (#38083509)
Are there clauses in 23andme type companies that they will never share your data with insurances?

What if it got bought by an insurance?

Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by throw__away7391 on Tuesday October 31, 2023 @08:13AM (#38083570)
The OP wasn't even talking about 23andme, it was some doctors at a university.
Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by ladberg on Tuesday October 31, 2023 @11:49AM (#38086720)
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.

Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by dkural on Wednesday November 01, 2023 @12:52AM (#38094702)
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.
Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by mc32 on Tuesday October 31, 2023 @08:46AM (#38083962)
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.
Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by gertrunde on Tuesday October 31, 2023 @11:14AM (#38086089)
Very similar to the case of Henrietta Lacks.

(https://en.wikipedia.org/wiki/Henrietta_Lacks)

Re:Drugmakers Are Set to Pay 23andMe Millions to Access Cons... by abandonliberty on Thursday November 02, 2023 @02:24AM (#38109648)
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?