The Precision Medicine Initiative

Posted in Medical Malpractice

Recently, New York Times journalist Robert Pear published an article on the Precision Medicine Initiative (PMI). According to Mr. Pear’s article, in November or December of 2016 you may be selected to join the Precision Medicine cohort, a long-term population-based health research study that will provide valuable research on disease and illness in the United States.

Government scientists are seeking a million volunteers willing to share information on their genetic background, environment, and lifestyle choices.  The PMI hopes to collect ten (10) years of data related to diet, exercise, smoking, drinking, sleep patterns, and other social behavior that will permit researchers to identify possible risk factors for health, including from air pollution and lead levels in drinking water.

Mr. Pears  interviewed Dr. Rhonda K. Trousdale, Chief of Endocrinology at Harlem Hospital, who noted that the motivation for researchers is to use the data from the initiative to find correlations between people’s lifestyle, family history, environment, and genomic data in order to determine what factors contribute to disease and if they affect different populations in different ways. The information will be used to develop treatments tailored to the characteristics of individual patients.

The PMI project will be run by Dr. Francis S. Collins, the director of the National Institute of Health (NIH) and include participants from a general cross-section of socio-economic, geographic, racial and ethnic populations in the U.S. Congress has approved $130 million of the $230 million requested by President Obama to support the project which has received bipartisan support in Congress.

As part of the study, the Mayo Clinic will create a huge “biobank” to collect, analyze, and store 35 million samples of blood, DNA, and other materials from participants. Vanderbilt University will operate a data center to store information. Some of the data will be made available to researchers without personal identifiers.  In addition, patients will have access to all the information about themselves, including laboratory and genetic test results. Patients will help guide the research by sitting on the initiative steering committee and advisory board.

Study data will be garnered from online questionnaires, physical exams, electronic health records, and activity tracking devices like Fitbit. Smart phone apps will report information on participants’ blood pressure, heart rate, and other vital signs. Anyone can volunteer for the study by signing up via computer or smartphone or through the PMI call center. Healthcare providers will invite their patients to participate as well. The goal is to sign up a million or more people over the next four (4) years.