Johns Hopkins bioethicist Nancy Kass will serve as chairperson of the National Institutes of Health institutional review board overseeing a landmark research study that plans to enroll one million participants in an effort to best utilize electronic medical records and genetic data to improve health care.
The Precision Medicine Initiative (PMI) Cohort Program, announced by NIH Director Francis Collins on Feb. 25 at the White House, plans to enroll diverse volunteers representing the American public's range of ages, races, affluence, geography, and health status. Participants' medical records will be linked to biospecimen samples and genetic tests, with the hope of revealing connections among some of the complex, multifactorial origins of disease that can only be found by crunching the data of a large group.
The million-person study group, or cohort, is the largest ever undertaken by the U.S. government and has a proposed budget of $130 million. The program aims to enroll 79,000 participants by the end of 2016.
"The Precision Medicine Initiative is both an enormous and important undertaking," Kass says. "With the data now available through electronic health records and genome sequencing, the answers to some of our most vexing health problems could be within our grasp. It is essential that we get the ethics side of precision medicine right, too. There is an extraordinary investment of both tax dollars and individual information in creating this cohort; the payoff needs to be that we are learning things that improve the health of the public."
Kass has worked for years to adapt ethical thinking to a changing health care landscape. She is the Phoebe R. Berman Professor of Bioethics and Public Health, holds appointments in both the Johns Hopkins Berman Institute of Bioethics and Bloomberg School of Public Health, and served on the inaugural National Cancer Institute Central IRB.