Monday, 25 February 2013

C. Jimmy Lin talks about crowdsourced funded Genomics research

Have you heard of ? They are a 'non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. One can't help but notice the similarity to BGI-Shenzhen which is the 'first citizen-managed , non-profit research institute in China'. Perhaps this is the start of a trend for research that benefits citizens directly. Instead of getting/waiting for government funding / which complicates and slows down the research (see grant cycle) you can get funding directly from the ones that benefit. The tip of the iceberg is when publicly funded research is unavailable for public access without paying subscription fees.

Direct to consumer treatments and research for rare genetic disorders makes sense if you think about it. Getting funding for diabetes is likely easier and makes more economical sense since the dollars benefit a larger populace.
If you have a rare genetic disorder that might be limited to your family or a few families, you are kinda out of luck.
Your options are

  1. doing the research yourself
  2. convince your physician to take it up as a research project
  3. offer your patient sample for others to research (not the best example but TED Fellow Salvatore Iaconese open sourced his brain cancer for a cure or art)
  4. well now you can go to raregenomics

Citizen science is the latest trending topic/tag. From ecology projects like and to sequencing projects like uBiome to 'Bioinformatics as a game' like Phylo website it will be interesting to see how this plays out for research and science education as a trend. IMHO, you can only get rare genetics disorder research started as a non-profit now since the cost of sequencing isn't cheap enough yet (see 'A $1000 genome by 2013?' )

Related Links
'la cura, the cure'

'Interview with C. Jimmy Lin'

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