Francis Collins: Privacy a priority for Precision Medicine Initiative


Speaking Wednesday at an event hosted by The Washington Post, National Institutes of Health Director Francis Collins discussed both the potential of and the challenges surrounding the Precision Medicine Initiative.

In particular, Collins said, privacy is a priority, especially given the program’s size--1 million participants--and the current climate in the industry regarding cybersecurity.

“We have thought about [privacy] a lot, and if there’s one thing that wakes me up at night when I’m thinking about how cool this could be, but also thinking about all the ways that this might not go well, is if we have some kind of terrible security breach,” Collins said. “People are being asked to make available their electronic health records and there’s a lot of personal, private information in it, with the expectation that that’s going to be a trusted donation that will be handled with great care and will not be falling into the hands of bad people.”

Collins said NIH has spent more time on privacy aspects of the initiative than any other area, noting that he and his colleagues have worked both with private sector and government experts to ensure that security standards are as strong as possible.

“We will not actually launch this until we’re confident on a variety of tests, so-called penetration tests, that we have the toughest possible firewall against mischief,” Collins said.

Regarding potential, Collins spoke about offering highly individualized treatments to cancer patients, touting that the costs for sequencing human genomes have rapidly declined since 2003.

“That first human genome ... cost us $400 million, and now we can do that in a couple of days for $1,500,” Collins said. “Imagine the curve that this has been on. If I had a cancer diagnosed today, I would want that cancer to be completely analyzed. I would want to know ‘what are the drivers in my tumor that are making it do those bad things,’ and then I’d want to compare that to a menu of targeted drugs. ... I’d want to pick from that menu which ones are the best match to my particular medicine. That’s precision medicine attached to this cancer issue.”

Collins also said he has regular joint meetings with Centers for Medicare & Medicaid Services Acting Administrator Andy Slavitt and Food and Drug Administration Commissioner Robert Califf about how to come up with evidence that would be convincing enough for payers to reimburse such sequencing.

“Otherwise, we run into the risk that only rich people are going to take advantage of this cutting-edge science,” he said. “That is not the way I think our healthcare system ought to behave.”  

Still, the program is about more than just cancer, Collins said; it’s about improving healthcare for all citizens.

“For this particular program, because we very much want to change the paradigm and have these million people, not as subjects, I really don’t like that word when it comes to research, not as patients, because many of them won’t be sick, but as partners, in which case, I think ... that people will want to have information about themselves and we should make that available to them,” he said.

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