Research 2.0: Rise of the Citizen-Scientist and the Death of Privacy

by Craig Klugman, Ph.D.

On Monday I attended a symposium on inter-professional education. During a session on new technologies in medicine (telemedicine, wearables, and mobile devices) I brought up the question of preserving privacy. The foundation sponsoring the event replied to me, “There is no such thing as privacy. It’s dead.” For someone who works in bioethics, serves on an IRB, and was formerly a journalist, this notion is scary. Perhaps, I have simply been in denial. After all, I use a mobile phone that tracks my position, synchs with the cloud, and provides much convenience. In exchange, my information is collected, analyzed, sorted, and used for marketing and more.

Another sign of the end of privacy is the Open Humans Network, a project of the Harvard Personal Genome Project. The project has researchers at Harvard, NYU, and UC San Diego backed by grants from the Knight Foundation and Robert Wood Johnson. The project seeks to connect people willing to share their personal information with researchers on an open platform.

“The value of sharing data is abundantly clear, and technical barriers are now surmountable thanks to the Internet and advances in information technology. The remaining barriers are legal and ethical, not technical.” The study protocol goes on to explain that promises of privacy “restrain” researchers in “data silos.” Such “silos” mean there are limitations on sharing data between studies and researchers on different projects, between subjects, and with the public.

If that was not concerning enough, consider that participants are called “members” not subjects. This makes people feel more like part of a club rather than an object of study.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.