My research is about generating synthetic Electronic Healthcare Records (EHR) using Generative Adversarial Networks (GANs). My work relies on previous research done with human subjects, but I am not directly researching humans.
Because I do not work with human participants, I did not need to deal with VT IRB. However, since I need datasets, I had to deal with other institutions’ IRB.
I mostly use a dataset owned by Lab for Computational Physiology, which is owned by MIT. I had to pass a course on CITI regarding how I should treat human participants and their data. Additionally, I had to sign a contract that would prevent me from distributing any data that I collect using their dataset. They also required my professor permission to grant me access to this dataset.
I think informed consent on all aspects of an experiment should be mandatory. I know from my research that de-identification techniques are not enough. All people participating in an experiment can be prune to re-identification attacks, and their privacy might be violated. I am against any unknown experimentation that can affect a person’s life without them acknowledging it, obviously because it can affect their life and people are not guinea pigs.