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News Release
For Release: August 12, 2002

Individuals Lose But Government and Corporations Gain Control over Personal Health & Genetic Information

Washington, D.C.—On August 9, 2002, the U.S. Department of Health and Human Services (HHS) announced it has revised the federal medical privacy rule initially proposed by the Clinton Administration. HHS's "Fact Sheet" admits that the revised rule eliminates the requirement that doctors must get patients' consent before releasing patients' personal health information—including genetic information—for treatment, payment or health care operations (a broad definition encompassing many uses).

Rather than allowing individuals to decide who can see their medical records, HHS is granting federal regulatory authority for data-processing companies, insurers, some researchers, government officials and others to access individuals' personal health information without individuals' permission.

Additionally, when the rule takes effect in April 2003, individuals' personal health information can be transferred electronically over the Internet without patients' consent. But most Americans won't know this is happening because under the federal medical privacy rule, citizens will not get an accounting of disclosures for routine uses of their personal health information (for which the number of routine uses is unlimited).

"HHS's Fact Sheet about the federal medical privacy rule is very misleading," says Sue Blevins, president of the Institute for Health Freedom. "That's because while claiming to be committed to 'maintaining protections for the privacy of individually identifiable health information,' HHS's privacy rule does not prevent government or the medical industry from compiling and sharing individuals' personal health information—including genetic information—without individuals' permission. How can HHS say patients' privacy is being enhanced when, in fact, HHS is actually granting legal access to patients' records without their consent?" She adds, "If Enron or WorldCom executives had distorted the truth the way HHS officials have about the federal medical privacy rule, they would probably be charged with false advertising."

"For the first time in our nation's history, the federal government has taken the patient out of the driver's seat and given the medical industry full access to individuals' personal health information without individuals' permission," Blevins notes.

For information about health privacy issues visit

Bush administration grants data-processing companies and other health care industries new federal regulatory authority to collect and share individuals' personal health information— including genetic information— without individuals' consent.