Uncle Sam Wants You — Or at Least Your Genetic and Lifestyle Information; New York Times, 7/23/16

Robert Pear, New York Times; Uncle Sam Wants You — Or at Least Your Genetic and Lifestyle Information:

"People can sign up through academic medical centers at Columbia University, Northwestern University in Illinois, the University of Arizona and the University of Pittsburgh, each of which is working with local partners. Columbia, for example, is collaborating with NewYork-Presbyterian Hospital, Harlem Hospital and Weill Cornell Medicine.

Participants will be recruited to reflect the geographic, racial, ethnic and socioeconomic diversity of the nation. To help achieve that goal, officials have enlisted community health centers, where more than 90 percent of patients have annual incomes less than twice the poverty level (less than $23,760 for an individual). About one-third of health center patients are Latinos, and about one-fourth are African-Americans.

Officials said they wanted patients to be partners in the research, not just “human subjects.” To that end, patients will have access to all the information about themselves, including laboratory and genetic test results. Doctors could eventually use the data to shape treatment for an individual patient, rather than using standard treatments that may not work for everyone. Patients will help guide the research, sitting on its steering committee and advisory board."