Obama chief data scientist: Trumpcare health plan would ‘cripple’ precision medicine; FedScoop, May 24, 2017

Billy Mitchell, FedScoop; Obama chief data scientist: Trumpcare health plan would ‘cripple’ precision medicine

"DJ Patil, U.S. chief data scientist in the latter years of Barack Obama’s presidency, wrote on Medium that Trumpcare, as the AHCA is nicknamed, would threaten the country’s ability to leverage data to advance medical science, particularly in the fight against major diseases like cancer. The White House’s proposal would allow insurance companies to deny coverage or charge more when people have preexisting medical conditions. That provision could make people less willing to share important information about themselves with researchers, Patil says, because of fear it could be used against them later.

“[M]y deep fear is that people won’t be willing to donate their data. And there are too many people who have diseases that need us to donate our data to help,” Patil writes.

At the center of the Precision Medicine Initiative introduced under Obama is the “responsible collection of large amounts of data to be able to develop truly customized medical treatments for each patient,” Patil explains. The Trump legislation essentially threatens that project."

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."