Imagine if FedEx ripped open every package it delivered and made copies of the documents inside before delivering the package. And then imagine that it sold those copied documents to anyone it did business with who wanted to buy the information. You’d stop using FedEx, right?
Welcome to the dark underbelly of our nation’s medical data, says Dr. Deborah Peel, an Austin psychiatrist and founder of the Patient Privacy Rights Foundation.
“Everybody rips it open and copies it. The health IT industry is not a trusted courier,” Peel says. Even though the Health Insurance Portability and Accountability Act passed in the mid-90s eventually included provisions that would recognize the “right of consent” of patients, the rule was amended in 2002, Peel says.
That change virtually eliminated the right of consent — and a consumer’s right to privacy along with it, Peel argues. “That’s 2,000 years of medical ethics wiped out by appointees to a federal agency,” she adds. Now, Peel says that thousands of companies — insurance companies, large employers and even data miners in Bangalore — can now gain access to private medical data.