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."