Georgetown Law Hosts Health Privacy Summit

June 10, 2013 — In 2007, an American woman who had once participated in a study sponsored by the National Institutes of Health stumbled upon her name, address, birth date, medical procedures and diagnosis stored on a German Internet site for video game enthusiasts.

 “I expected complete privacy,” said the patient, who told her story via live video feed during a two-day Health Privacy Summit at Georgetown Law on June 5 and 6, co-hosted by the Law Center’s O’Neill Institute for National and Global Health Law and the Patient Privacy Rights coalition. “I expected the same kind of privacy that we all expect [when] we see our physicians and medical providers.”

The privacy summit was especially timely — coming just days after the Supreme Court concluded in Maryland v. King that taking an arrestee’s DNA via a cheek swab was, like fingerprinting and photographing, a legitimate police booking procedure under the Fourth Amendment.

“I selected [my speech topic] with the best of intentions,” said Adjunct Professor Marc Rotenberg, executive director of the Electronic Privacy Information Center who gave a keynote address on privacy and the Constitution. “I really had no idea that I would have to start carrying around a box of Q-Tips in my car beginning this week.”

Rotenberg called for several measures that would have an “enormous beneficial impact” on protecting medical records, including the enactment of the Consumer Privacy Bill of Rights, the updating of the Electronic Communications Privacy Act of 1986 and the establishment of an independent privacy agency.

Breakout sessions included the use of psychiatric data in the wake of the Newtown shootings and the value of health data to organized crime. 

“The real situation today,” said Ron Ross of the National Institute of Standards and Technology, “is that your data is stored everywhere.”

For a full list of speakers, click here.

For Day One of the webcast, click here.

For Day Two of the webcast, click here.

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