Table 6.

Concerns about commercialization of shared data.

“[A]nything that we can scientifically extract from the brain data, I don’t ethically find that anything out of that should be patented […] Again, we’re trying to make a scientific contribution. I don’t think a discovery should be patented. A system that’s invented could be, but I really don’t think scientific discovery should be patented” (R_13).

“[T]here are other companies in this space who are making their business models off of a cross-site or cross-disease, cross-study data mining […] using large, large, large datasets across lots of studies and sites to make insights and it’s interesting that—it seems like whatever NIH suggests should not be something that is related to a commercial interest. But I don’t think that’s been made clear from the NIH. I don’t know where they want us to put stuff, if they have a place” (R_22).

“[A] lot of times we’re the ones developing it, giving them the information they need to take it to the next step, we have the ideas but we can’t manufacture these devices to put in humans so then they end up doing it and claiming all the IP. And they end up with the big payday. So I think we do get screwed at some point on this” (R_12).

“[W]e’re sort of put in a spot where if we want to do this research, we have to use these devices that are coming only from say these companies and so we’re sort of in a bind where we have very little leverage to make any more beneficial arrangement with the company. We have no leverage in the relationship essentially” (R_22).