I’m at an archival tour for a health sciences special collection at an institution that will be unnamed, and I am extremely uncomfortable.
My group and I have been shown patient records for children and senior citizens and immigrants and transgender and intersex people from as recent the 1980s. Some of these people are still alive. I may have passed them on the street on my way in.
My group has heard a lot about how HIPAA is not being violated and how legal counsel has okayed this practice and that practice. We’ve been shown some signed forms. But I still feel incredibly gross about all this. It’s exploitative and wrong. It may be legal, but it’s certainly unethical.
Did these patients understand how their personal materials would be used? Did they know that in 2017, a group of scholars would be pawing through their procedure images and notes and photos? Are they okay with that? I don’t know the answer. I don’t think anyone knows. And that’s the problem.
I’ve talked about this before and others have talked about this, but I just had to share. I don’t have anything else to add really; just the same thing I’ve been repeating over and over:
WHAT IS LEGAL IS NOT WHAT IS ETHICAL AND VICE VERSA.
Please, fellow library and archive folks, let’s be more thoughtful, more critical about our work.