I never would have thought my medical research beat would lead to a story involving the Golden State Killer. But here I am.
On Tuesday, the National Institutes of Health officially announced that May 6 would be the national launch date of its All of Us Research Program to build a million-person, health research database to advance precision medicine (We’ve known and written about that date for a few weeks, but the press briefing basically made it Facebook official).
During that call, there were several questions about the privacy and security measures, and whether the methods used to arrest Joseph James DeAngelo on charges of a dozen murders and 50 rapes in the 1970s and 1980s could be used on the data submitted to the All of US program. You see the authorities used online genetic tests to match them with samples from those crimes. And All of Us will collect samples from some of the participants, some of which will have their entire genome sequence.
But in short, the answer is no. They can’t.
Any NIH-funded scientists working with identifiable, sensitive information that is collected for biomedical, behavioral, clinical or other research automatically receive protections from subpoenas under a program known as Certificates of Confidentiality. These used to be physical certificates that researchers had to apply for and could take months to get, David G. Forster, the chief compliance officer for WIRB-Copernicus Group, a large commercial institutional review board, told me back in the fall.
“They didn’t get used as much as they might have,” he said in a story I did back in September. “IRB members and researchers just started to regard them as an administrative burden.”
But the 21st Century Cures law expanded these protections so they automatically apply to all NIH-funded studies involving people’s private, identification information.
(This doesn’t prevent research subjects from providing their own information, if they so choose. It just protects the scientist from being legally compelled to do so.)
Read my story here.
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