Final Economic Stimulus Bill Permits Americans' Personal Health Information to Be Sold for Research and Public Health Purposes WITHOUT Patients' Consent
The bill also mandates the plan for each American to have a single electronic health record by 2014, without opt-out or patient consent provisions.
"This bill is very misleading because while it promises to outlaw the selling of data, the exceptions to the rule are huge and allow Americans' personal health data to be exchanged and sold for research and public-health purposes without patients' consent," says Sue Blevins, president of the Institute for Health Freedom.
"This is a historical and unbelievable assault on the privacy rights of all Americans. Personal health information should not be exchanged and sold for research and public-health surveillance without patients' consent," stresses Twila Brase, president of Citizens' Council on Health Care. "Patient data belongs to the patient. A pocket full of cash should not undo a patient's right to protect their medical privacy."
Blevins adds, "Most Americans have no idea that the so-called HIPAA privacy rule doesn't give patients the freedom to give or withhold consent before their personal health information can be shared with others for many purposes. Digitizing people's health records combined with allowing researchers and public-health officials to buy their data from doctors and health plans is going to pave the way for unconsented research on millions of Americans."
These privacy advocates urge all Americans and policymakers to carefully examine the Final Conference Report, Part A on the economic stimulus bill, pdf page 296 (p. 11) and pdf pages 391-395 (pp. 106-110).