Table 4.

Concerns about participant privacy.

“We have to be a little careful as to what is identifying and not identifying information but there aren’t a large number of aDBS studies, For example, […] we have video data of the person, let’s say that’s not made available or some extraction of that is that’s not identifiable. There are so few people in these types of studies that with the data, if someone had all the data we collected in our study, they could probably figure out which person it was, or they might be able to” (R_22).

“[I would feel uncomfortable sharing] data that can be easily tagged to a patient’s identity. That in particular, or certainly anything that has any financial implication or whatever. Anything that if lost, could lead to identity theft” (R_19).

“I don’t think videos of the face should ever be shared. We have to, if we’re sharing the face, a video of someone, I think their face has to be blurred unless we have their specific consent to not blur the face” (R_14).