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Whenever someone gets something removed from their body at a research hospital, it gets put into a glass jar and stuck somewhere in the basement. It would be co
by starkfist 16y ago
Whenever someone gets something removed from their body at a research hospital, it gets put into a glass jar and stuck somewhere in the basement. It would be cool to sequence all of the dna in tissue along with the phenotype data (what is the tissue, what's wrong with it, why was it removed, etc) and put the data somewhere publicly accessible. I believe there are already pushes to do this but they are mired in academic and hospital bureaucracy.
- btmorex 16y agoWouldn't you have to get a signed waiver from everyone? Also, sequencing still isn't actually cheap. The price is dropping quickly and its cost is reasonable for research, but it's not reasonable for "let's sequence everything" (yet)
- starkfist 16y agoYes, when I was involved with this... privacy was a major issue. But I think everyone was over thinking it. In this day and age when people twitter their turds, it seems like it would be less of an issue. The sequencing is cheap enough.
- SkyMarshal 16y agoHow about if the data collectors just agree to ignore any personally identifiable information? Probably more interested in the data aggregate anyway.
- starkfist 16y agoWhen I was involved with some people who wanted to do this, they had a security expert on the "board" who would bring up that study where given 2 (or 3?) pieces of information about a person, you can ID them. I guess just knowing the hospital and the sample and the date, you could ID the person. Anyway, these were the kinds of discussions I had for a year and then decided to leave the world of semi-academic meta-bio research because there were too many "committees" and "boardS" and "experts" and nothing ever got done.
- SkyMarshal 16y agoOh right, Information Theory. There was a cool article on HN about that a while back, showing you only need something like 3 bits (zip code, birth date, and something else iirc) to identify anyone in the world.
- zitterbewegung 16y agoThere are also HIPPA laws to consider also if you opened up all that information. Not to mention the privacy concerns.
- steveitis 16y agoI used to work in a mental hospital, and we were very serious about HIPAA. Anyhow, HIPAA only covers personally identifiable patient information so I think they'd be cool as long as it couldn't be traced back to the original person. Although theoretically the DNA itself could be considered personally identifiable. I guess it'd be up to the courts to decide really.