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"Protecting the health and informed consent rights of children since 1982."

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For Immediate Release: October 21, 2002

Contact: Debbie Grady (202) 429-6610

Newly Modified, Final Federal Medical Privacy Rule Eliminates Citizens’ Control over Their Personal Health Information

Washington, D.C.—The newly modified, final federal medical privacy rule that went into effect on October 15, 2002 strips citizens of their medical privacy, says a panel of experts speaking at the National Press Club today. The Institute for Health Freedom sponsored a press conference to explain to the media and public how the rule eliminates individuals’ control over their personal health information—including genetic information.

“The U.S. Department of Health and Human Services continues to mislead the public regarding this important historical change in medical privacy ethics,” said Sue Blevins, president of the Institute for Health Freedom. “For example, HHS’s October 2 update titled ‘Frequently Asked Questions About the HIPAA Privacy Rule’ leads the public to believe that their personal health information won’t be compiled in government or private databases without individuals’ consent. However, while it is true that the rule does not create such databases, it certainly does not prevent them,” she noted.

“There is nothing in the rule that prevents data-processing companies, health care providers, health plans, and/or government agencies from compiling individuals’ personal health information—including genetic information—in databases without individuals’ consent,” Blevins said. “The rule actually permits and fosters the creation of medical and genetic databases without individuals’ consent.”

For the first time in our nation’s history, the federal government is going to decide for each and every citizen whether individuals’ personal health information can be disclosed for purposes of treatment, payment, or health care operations. This latter term is so broadly defined that it includes everything from fundraising activities to permitting government agencies to pore over patients’ medical records to detect Medicare fraud and abuse.

“Citizens don’t have to accept this weak rule and many aren’t going to, either,” Blevins stressed. She noted that there are activities underway to challenge the new rule, including litigation on behalf of the American Psychoanalytic Association.

Moreover, “a recent study in the Privacy Journal shows that states protect the privacy of citizens better than the federal government,” Blevins said. That is why those who are concerned about the rule and the loss of medical privacy should work closely with their governors, state legislators, and attorneys general to make sure their state medical privacy laws and state constitutions are not overridden by the newly modified, final federal medical privacy rule.

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