And how do you get truly informed consent from a patient if you can’t say what the data may be used to study in the future? Dr. Kaye argued for a “consent for governance” in which patients are educated about the rules of the game, which will be refereed by research ethics committees and oversight bodies, and the patients agree that once they release their data, the lose individual control in some ways.
“It’s a bit like `Hotel California,’” she said. “You can check out any time you like, but you can never leave.”
Melissa Mourges displays the kind of genetic information obtained for criminal prosecution.
The chief of the New York County District Attorney’s Forensic Sciences/Cold Case Unit brought the discussion back down to earth by describing how they convicted a criminal by matching his DNA to a specimen from tea cup that he left behind. (“We only catch the dumb ones,” she said as an aside.)
“Opponents of forensic DNA databases say this will allow government, employers and insurers to deny benefits. They’re just wrong,” said Melissa Mourges, J.D. Nearly 15 years of experience with the FBI’s Combined DNA Index System (CODIS) is “enough to prove you can have privacy and security” while allowing access to some genetic information.
Read more details from the meeting in blog posts by Commission staff on Ms. Beery, on comments by various speakers, on Ms. Mourges’s show-and-tell, and on the speakers’ final thoughts. The Commission’s report should be finished by late 2012.
--Sherry Boschert (@SherryBoschert on Twitter)