In reply to Richard Sever.

Hi Richard

So I'm going to stick with my original point. A copyright license is the wrong tool to use here to give the right kind of (credible) assurances to a participant about use of sensitive data (of any kind). I don't doubt that such restrictions might be comforting, but they're ultimately not really enforceable.

For instance, the authors (as copyright holders) would have to contract with the patient, to pursue the matter in court just as a start. And in many cases there may not be a credible copyright case to make. That combined with the risks of contaminating an open corpus with variant licenses is a slam dunk for me. Even going down this route isn't really ethical because its misrepresenting the situation to participants.

And in the end given that the risks are not clear, even to us who are notionally experts, informed consent is on shakey grounds and safeguarding and precautionary principle would suggest that erring on side of caution and using access controlled data repositories is the way forward. And that's before the additional issue of parents giving consent for children is raised as well.

So in the end, wanting to maximise the chances of consent *is* an ethical issue and one I think we should step away from as it implies guarantees that we can't make.