4 ms·

Twenty-five years after we found the gene, and "there's currently no cure for Huntington's disease or any way to stop it getting worse." https://www.nhs.uk/con

Twenty-five years after we found the gene, and "there's currently no cure for Huntington's disease or any way to stop it getting worse." https://www.nhs.uk/conditions/huntingtons-disease/ https://www.nhs.uk/conditions/huntingtons-disease/ (2018)

jostmey 8y ago
It's a testament to two things: 1. Biology is hard, unimaginably harder than writing a piece of software, for example. 2. The way research is funded is horribly inefficient and in serious need of an overhaul. I'm all for pouring more money into research, but too much research takes place in bloated universities and too little money trickles down to the scientist doing the actual work.
- nextos 8y ago
  This is so true. The principal investigator model creates huge research groups that are terribly inefficient. Instead of having a small set of agile researchers, it promotes research groups with tons of middle managers and charlatans. Pure rent seekers. I say this after being a researcher in a few of the best universities in the world. It's pretty hopeless.
  - imranq 8y ago
    I’d love to hear more about your experience. I’m designing new ways of conducting research at a big research institute.
    - nextos 8y ago
      Feel free to drop me an email if needed. Contact information is in my profile. As a brief summary, I think keeping research groups small and most funding internal does solve lots of problems. I think you want to avoid at all costs having a principal investigator that publishes 50 papers per year and supervises 20 students simultaneously. Which means he is actually doing none of these things. Just stamping his signature everywhere, and doing a bit of politics to raise funds. Howard Hughes Medical Institute conducted a long investigation on how to do good research prior to starting Janelia Campus. They looked into very successful institutions (AT&T Labs, LMB, CSHL, etc) and drew some equivalent conclusions to what I stated above [1]. [1] https://www.janelia.org/sites/default/files/About%20Us/JFRC.pdf https://www.janelia.org/sites/default/files/About%20Us/JFRC....
      - imranq 8y ago
        Excellent, thank you!
lostlogin 8y ago
Embryos can be screened - doesn’t help the individual but prevents inheritance.

jostmey 8y ago

It's a testament to two things: 1. Biology is hard, unimaginably harder than writing a piece of software, for example. 2. The way research is funded is horribly inefficient and in serious need of an overhaul. I'm all for pouring more money into research, but too much research takes place in bloated universities and too little money trickles down to the scientist doing the actual work.

nextos 8y ago
This is so true. The principal investigator model creates huge research groups that are terribly inefficient. Instead of having a small set of agile researchers, it promotes research groups with tons of middle managers and charlatans. Pure rent seekers. I say this after being a researcher in a few of the best universities in the world. It's pretty hopeless.
- imranq 8y ago
  I’d love to hear more about your experience. I’m designing new ways of conducting research at a big research institute.
  - nextos 8y ago
    Feel free to drop me an email if needed. Contact information is in my profile. As a brief summary, I think keeping research groups small and most funding internal does solve lots of problems. I think you want to avoid at all costs having a principal investigator that publishes 50 papers per year and supervises 20 students simultaneously. Which means he is actually doing none of these things. Just stamping his signature everywhere, and doing a bit of politics to raise funds. Howard Hughes Medical Institute conducted a long investigation on how to do good research prior to starting Janelia Campus. They looked into very successful institutions (AT&T Labs, LMB, CSHL, etc) and drew some equivalent conclusions to what I stated above [1]. [1] https://www.janelia.org/sites/default/files/About%20Us/JFRC.pdf https://www.janelia.org/sites/default/files/About%20Us/JFRC....
    - imranq 8y ago
      Excellent, thank you!

lostlogin 8y ago

Embryos can be screened - doesn’t help the individual but prevents inheritance.