Comment by clairity
3 years ago
appreciate the forthrightness, but frankly, that's an unconvincing answer. participants should have full control over their own data rather than offloading trust to government agencies or corporate organizations that are potentially themselves corrupt.
note, for instance, that many gov agencies blindly and willingly send PII to google without participant permission.
I don't disagree and we work hard to provide guidance on best practices and software to support implementation. Ultimately, in the contexts in which we work, the organizations are the data controllers and there are complex legal issues at play. For example, in some locales, clinical trial participants don't have the right to be forgotten.