6 ms·
This is the money quote that summarizes the view of ~everyone in clinical care: “You have to ask, how is it possible that my doctor cannot look at my DNA witho
by carbocation 14y ago
This is the money quote that summarizes the view of ~everyone in clinical care:
“You have to ask, how is it possible that my doctor cannot look at my DNA without being concerned about patent infringement?” Christopher Mason, assistant professor at Weill Medical College, told The Guardian.
- rayiner 14y agoWould the doctor have known what gene sequences to look for if Myriad hadn't done the R&D and published the results?
- loceng 14y agoPublic money would have eventually funded this as it's so important to know.
- carbocation 14y agoFrom memory, BRCA1 was discovered at UC Berkeley; BRCA2 was discovered at the University of Utah. Public money did fund this research.
- angersock 14y agoBut, man, don't you get it--without patents and the free market we can't have research, God. Why do you hate America?
- rayiner 14y agoI don't think anybody is arguing you can't have research without patents. People are saying that you can't have research without tons of cash. Whether that cash is a license from the government to get money from users of an invention, or a straight up check is a public policy issue. If the government funds some research, everyone pays for it whether or not they use it. If the government grants some legal protection that makes it easier to monetize that research from users, then only users pay for it. Which of those is more appropriate is context-specific.
- angersock 14y agoI agree with your conclusion there, however people very much do argue that you can't (won't) have research without patents. It's almost as common a refrain as "people wouldn't create new works without strong copyright laws" or "piracy is stealing".
- carbocation 14y ago> Would the doctor have known what gene sequences to look for if Myriad hadn't done the R&D and published the results? That question implies a very confused version of history. BRCA1/2 were discovered by NIH-funded researchers at universities. Some of these co-discoverers went on to found Myriad. Other co-discoverers, such as Mary-Claire King, did not. Also, after the first large-scale GWAS studies in the late 2000s, a high school student with enough funding could have discovered the BRCA1/2 - breast cancer association.
- twoodfin 14y agoLots of patented technology starts out at universities via (at least some) public funding. Typically, the university demands a cut of the patent royalties. It's no one's fault but the NIH if their grants don't come with similar strings attached.
- carbocation 14y ago> It's no one's fault but the NIH if their grants don't come with similar strings attached. That's also an ahistorical comment. Prior to Bayh-Dole, federal research funding obligated discoveries to be assigned to the government. Post Bayh-Dole, universities get to pursue patents even if the discovery was publicly funded. So you actually cannot blame the NIH; you could blame Congress.
- twoodfin 14y agoFair point. So you think Bayh-Dole is worth repealing or modifying? A quick read through the Wikipedia article certainly makes it sound like a reasonable policy (for example, licensing is mandatory) and demonstrably preferable to the previous regime.
- carbocation 14y agoBayh-Dole applies to so many things beyond my realm of knowledge that I don't know that I currently have a thoughtful idea of whether or how I would amend it, if given the chance. I was simply pointing out that one can't blame the NIH for the lack of stipulations on their grant money.
- angersock 14y agoSigns point to... yes.
- ajtaylor 14y agoI couldn't agree with you more. It's my body! Why should some corporation get to say how I look at myself? Imagine if the current personal DNA sequencing companies, like 23AndMe, could add checks for some of these aberrant genes? Curious if you have any pre-dispositions for genetic diseases? $300 + some spit could tell you everything you wanted to know.