March 7, 2016
Johns Hopkins Bioethicist Will Chair Board Overseeing Historic Million-Person NIH Research Study
Johns Hopkins bioethicist Nancy Kass, ScD, 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 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.
Kass, the Phoebe R. Berman Professor of Bioethics and Public Health, with appointments in both the Johns Hopkins Berman Institute of Bioethics and Bloomberg School of Public Health, 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.
“The Precision Medicine Initiative is both an enormous and important undertaking. 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,” Kass says.
“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. Our IRB will do its best to make sure that what is learned is communicated back particularly to those who have contributed data to this enormous effort.” Kass says.
Kass has worked for years to adapt ethical thinking to a changing healthcare landscape. In 2013, with her Johns Hopkins bioethicist colleague Ruth Faden and other leaders in the field, she proposed an overhaul of the conceptualization of health and medical research ethics, arguing that the distinct labels of ‘medical practice’ and ‘medical research’ established in the 1970s are no longer ethically relevant or helpful in today’s culture of fast-paced innovation. Kass also co-chaired the National Cancer Institute’s committee to develop recommendations for simplified informed consent procedures for cancer trials, and served on the inaugural National Cancer Institute Central IRB.
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