Johns Hopkins Bloomberg School of Public Health bioethicist Dr. Nancy Kass, will serve as chairperson of the National Institutes of Health (NIH) institutional review board overseeing a landmark research study that plans to enroll 1 million participants in an effort to best utilize electronic medical records and genetic data to improve healthcare.
The Precision Medicine Initiative (PMI) Cohort Program, announced by NIH director Dr. Francis Collins on February 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.
Dr. Kass, the Phoebe R. Berman professor of bioethics and public health, with appointments in both the Johns Hopkins Berman institute of bioethics and Johns Hopkins, says she is committed to realizing the potential power of research in the digital age, and to ensuring that ethics is integrated into the process.