Francis Collins is making the media rounds to drum up excitement about the All of Us initiative, among other things.
Speaking on CBS This Morning on Thursday, the NIH director walked viewers through the process for volunteering for the project. On the heels of news that the Golden State Killer was recently caught after crime authorities searched through a genealogy company for a match to crime scene DNA, Collins also sought to assuage concerns among potential volunteers about the privacy of their data.
All data will be anonymized, he says, and all the researchers will have to pledge that they will not try to ferret out the identities of the research participants. Furthermore, legislation passed about a year ago forbids the use of the All of Us database by law enforcement.
"This is very well protected, the database is encrypted. Of course, we all worry about hackers and ways which these kinds of databases may be attractive targets," he acknowledged, but "the security of the system seems absolutely the best that can be obtained at the present time."
His enthusiasm for All of Us was obvious even to the program's hosts, which, nonetheless, didn't stop them from cutting off Collins mid-sentence to end the segment.
Fret not, however, because he also spoke to Stat News, and covered a wide swath of topics. For instance, he expressed enthusiasm for the potential of CRISPR. "I think this will be the year where we will see the first clinical trials to cure sickle cell disease using CRISPR-Cas9," he says.
As enthusiastic about All of Us and CRISPR as he is, the state of electronic health records flummoxes him. "I thought by now we'd be in a circumstance where those would be interoperable and portable, so patients would have easy access to their own records. That's still been very frustrating," he says.
Our favorite bit from the piece, though: Before he wanted to be NIH director, before he wanted to go into science, he wanted to be a truck driver. To be fair, he was 7 years old at the time.