New World Privacy Forum report finds the Precision Medicine Initiative is lacking in legal privacy protections
FOR IMMEDIATE RELEASE: San Diego — The World Privacy Forum today published a report finding that the Precision Medicine Initiative has laudable goals, but that many core privacy questions are unaddressed and unanswered. President Obama’s Precision Medicine Initiative (PMI) is an ambitious program with a goal of gathering the freely volunteered health and biospecimen data of over a million people to facilitate medical research. According to World Privacy Forum’s analysis of the PMI documents and plans, the 1 million planned volunteers may be getting more exposure than they bargained for after they donate their medical records and biospecimens to the volunteer research effort.