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You'd be surprised. One headache there is what did you tell study participants you would do with the data? Did you say you'd keep it forever? Did you say 5 yea
by jrumbut 3y ago
You'd be surprised. One headache there is what did you tell study participants you would do with the data?
Did you say you'd keep it forever? Did you say 5 years? Who's in charge of making sure that this centralized repository isn't inappropriately holding and distributing data?
Funding organizations also have different requirements.
Then a script is only useful if paired with a set of libraries of a particular version, a specific compiler/interpreter, an OS, also there may be specialized hardware involved. Some of the languages used in science like SAS, Stata, SPSS, and Matlab, etc aren't free and open source so you can't always just bundle it.
And even data storage isn't trivial. For a recent small conference abstract I processed ~150GB of data. Hundreds (thousands? Tens of thousands?) of other papers have looked at that same data. You would really want some way to deduplicate that storage, but that introduces some additional complexity.
I do like this vision but I think it would be a major undertaking that would require a lot of well funded institutions coming together rather than any one in particular doing it on their own.
- Fomite 3y agoThis. "Your data is open and available in perpetuity for whatever use" is in deep conflict with how we think about human subjects data, often for very good reason.
- jrumbut 3y agoOne thing that was really jarring for me moving from the startup/consulting/advertising space to the research space was that human subjects data really gets deleted. It's not just the deleted_at column being set, there's no backup, it's really gone. Every copy, forever. I appreciate the ethics of it, and part of my reason for working in this area is because of these ethics, but even 5 years in there is so much reluctance to press that delete button.
- simonw 3y agoThis is an excellent comment, thank you.