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In late January, President Barack Obama announced what some have called a moonshot.
The $215 million Precision Medicine Initiative seeks to transform the health care system to target therapies to patients according to their unique genetics and environment.
The most ambitious part of the initiative is a proposal to enroll 1 million people in essentially a superstudy. Their genomes will be sequenced, their medical experiences will be chronicled through their electronic health records, and sensors worn by them will track their activities, behaviors and environmental exposures.
Participation in the program would be voluntary, but many are already concerned about the protection of the participants’ privacy. That includes the president.
“We’re going to make sure that protecting patient privacy is built into our efforts from Day One,” Obama said at the program’s announcement. “It’s not going to be an afterthought.”
Privacy is a reasonable concern for an undertaking that’s likely to generate exabytes of data (an exabyte is 1 quintillion bytes) on people’s bodies, behaviors and cellular makeup. And the issues range from protecting people’s identities and information to...
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