Health Record Privacy Law Is Messing Up Research

Just days after a deputy director of national intelligence told Americans that we need to rethink our concepts of privacy, comes news that it may, in fact, be harming us in the long run. In a recent national survey, nearly 70% of research scientists said the 2003 Health Insurance Portability and Accountability Act (HIPAA) is “impeding scientific research, stalling clinical studies and halting others altogether.”

One of the big problems with HIPAA, they say, is it has increased the paperwork and legalese required to collect data, but done little to actually help protect patients: “The consent forms have become so long with the addition of HIPAA that subjects may not be understanding what they are agreeing to.”

Some databases are leaving out data that doesn’t meet HIPAA compliance, while some institutions are not even collecting certain types of potentially useful data because of HIPAA rules. This summer, the Institute of Medicine will make recommendations for “how to reduce the burden of HIPAA compliance on public health research.”

“Too much privacy? U.S. law makes research harder” [Reuters]
(Photo: Getty)