[throwaway_tech]

>They explictly tell you that they'd like to use your data for research

Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug?

Seems there was a misrepresentation in giving up their DNA, and those people should have rights to any drugs developed as a result.

[filoleg]

Who do you think does most of the pharmaceutical research? According to some quickly googleable info, private funding for pharmaceuticals is about 5 times that of public NIH research [0]. And before we assume that it all goes into the executive pay, turns out that private pharma in the US reinvests more of its revenues back into research and development than any other industry in the US (according to the same source).

0. https://www.drugcostfacts.org/public-vs-private-drug-funding

[_lqaf]

That's a pharma trade-org PR site. To be fair, I doubt they're directly lying about anything.

But why talk about executive pay and not marketing? Research clearly takes a backseat to marketing at these shops:

https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-p...

As for who pays for research, you're right that pharma companies now pay for over half of US biomed research, something that's been true for about a decade. I don't know how that "5 times" figure was calculated, but my figures show the government currently finances about 1/3 of biomed research, including almost all basic research.

Of course, pharma benefits from that research, too, and looking only at spends understates the value of those contributions. One recent study found that

"NIH funding contributed to published research associated with every one of the 210 new drugs approved by the Food and Drug Administration from 2010–2016."

https://www.pnas.org/content/115/10/2329

[throwaway_tech]

What does that have to do with obtaining HIPPA/DNA data the way they did?

What does big pharma reinvesting more of its revenue back into R&D have anything to do with obtaining peoples DNA through any means but directly from the owners of the DNA?

Big Pharma also spends more in lobbying efforts than any other industry...in fact double the next industry (tech)...in fact they spend in lobbying what the #2 and #3 industries (tech and insurance) spend together. Were you aware big pharma lobbying goes towards R&D tax credits for themselves?

[ajoy]

not really : https://www.statnews.com/2019/12/10/large-pharma-companies-p...

[pathseeker]

>Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug?

No...? Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.

[throwaway_tech]

>Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.

Since when is privacy violations a major point of medical research? Did these pharma companies get your DNA through a 3rd party without your knowledge?