3 ms·
I don't agree with much that Tom Coburn says, but he's right that 'data silos' are a big problem in cancer research. To elaborate on a few points: - While enro
by chrisamiller 11y ago
I don't agree with much that Tom Coburn says, but he's right that 'data silos' are a big problem in cancer research. To elaborate on a few points:
- While enrolling 500 people with breast cancer in a study might be easy enough at one academic hospital, there are lots of rare cancer types. It's fiendishly hard to gather enough cases to do real research on these, and samples are like gold, so people are resistant to sharing.
- There's lots of duplication of effort. While studies funded by the NIH are required to deposit their data, what's being deposited is raw sequence data, which requires lots of computation, disk, and skill to turn back into useful information about the mutations in cancer.
- The clinical data (phenotype) that is released with studies is often incomplete or vague enough to be useless
- Getting data into and out of these access-controlled repositories is, to put it mildly, a pain in the ass.
We do need to protect people's privacy, but removing some of these hurdles would go a long way towards accelerating the field.