Big data's burgeoning healthcare role causes increased legal, ethical concerns

From Facebook to the doctor's office, our information is continually being collected and analyzed. Now the question lies in what data should be accessible, and by whom.

When it comes to doctors, people are sharing their information with the view that they are looking out for your best interests, unlike a company such as Facebook, Glenn Cohen, a professor of health law and ethics at Harvard Law School, says in an interview with Vox.com.

"[Doctors are] paid, but we have a whole bunch of regulations in place to make sure that healthcare professionals don't act out of their own interests. ... It seems to me that Facebook is not the same kind of relationship, and we've never pretended otherwise," Cohen tells Vox.

In the interview, Cohen talks about the issues surrounding collection and consent of patient information, saying they are like "a see-saw, where you have consent on the one side and privacy and de-identification on the other side."

Cohen and other researchers from the University of California, San Francisco and the University of Texas Southwestern Medical Center recently published a study in Health Affairs on the legal and ethical implications of using predictive analytics models.

Cohen tells Vox that the more a patient's privacy is invaded, the more robust consent mechanisms are needed. One key to making data collection easier for doctors is de-identification. The more that happens, he says, the harder it is to identify data from a particular individual--and proceeding without individual consent seems more ethical.

What's more, Cohen says, patients should go through an informational session when entering a practice in order to better understand what it means to have their information in a database, and then possibly opt out. 

However, he adds, even with legal protections, "there could be some entities or people who want to use the data for purposes that will widen health disparities, not solve them."

Others have also proposed ideas and concerns over the security and use of big data. The Federal Trade Commission recently called for more transparency in how data brokers compile and use consumer information. In addition, the White House released a report in May on HIPAA, saying it may not be enough to ensure the privacy of patient health information.

To learn more:
- read the Vox interview

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