Deborah Peel, M.D.

PHILADELPHIA (Thursday, April 10, 2003) – A broad coalition of consumers and health-care practitioners [at present, 16 plaintiffs representing approximately 750,000 practitioners and consumers] today filed a lawsuit in Federal District Court to restore the long-held right to privacy and patient consent for use of personal health information….

While officials of the U.S. Department of Health and Human Services claim the regulations will increase security of medical records, the lawsuit filed by the advocacy groups contends that HIPAA’s little-known provisions actually grant unprecedented, unconstitutional access to files without the consent of patients. The federal rule, which has left medical staffs scrambling to insure patient privacy before next week’s final deadline, may allow insurance companies, employers, law enforcement officers and even bankers to review a patient’s cradle-to-grave medical history. It is in fact a “health information disclosure rule,” says Jim Turner, president of Citizens for Health, one of the consumer groups filing today’s suit.

“We agree with the federal government’s initial findings in 2001 that ‘privacy is a fundamental right’ of all Americans,” says Mr. Turner.  But, he adds, “the federal government abandoned this principle when quietly reversing its position in August 2002 and authorizing thousands of corporations and their “business associates” to use and disclose personal health information without regard to the individuals’ wishes.”

Dr. Deborah Peel, an Austin, Texas, psychiatrist who has testified before Congress on issues of medical privacy and has sponsored a fundraiser and established a Texas website to help finance today’s lawsuit, agreed that “the federal government was right in 2001 in initially finding that medical privacy is essential for quality health care.” In fact, numerous surveys show that citizens avoid seeking needed health care and refuse to confide in their physicians if they fear confidentiality will be breeched.

The loss of medical privacy also eliminates the equal opportunity of each American to be judged on his or her own merit rather than on his or her medical records, says Dr. Peel, who also is a member of one plaintiffs organization filing suit today.  “Ronald Reagan would never have had the opportunity to be elected president if his genetic predisposition for Alzheimer’s Disease had been made public,” she says.

Dr. Newell Fischer, president of the American Psychoanalytic Association, another plaintiff in the suit, lamented the loss of privacy. “It is regrettable that we and other citizens must resort to courts to preserve rights that the reason and experience of the country demonstrate are necessary for quality health care.” ... Medical confidentiality and consent have been fundamental ethical standards in health care since the Hippocratic oath….

The suit contends:  

1.     HHS violated the rulemaking requirements of the Administrative Procedure Act by failing to provide an adequate basis for reversing their original interpretation of HIPAA that the right of consent is essential for medical privacy and quality health care.  

2.     HHS exceeded that authority granted by Congress under HIPAA to set forth the privacy rights that individuals should have with respect to their identifiable health information when HHS granted blanket “regulatory permission” to thousands of covered entities and their business associates to use and disclose that information without consent and regardless of the individual’s wishes.  

3.     HHS violated the intent of Congress under HIPAA to provide greater privacy protections as it was facilitating the computerization of medical records.  The Privacy Rule provides for the widespread use and disclosure of identifiable health information but the Security Standards necessary to protect the privacy of this information in the hands of covered entities do not go into effect for two years and the Enforcement regulations necessary to ensure compliance with HIPAA standards have not even been proposed.  

4.     HHS has violated the right to privacy of personal information under the Fifth Amendment to the U.S. Constitution by depriving individuals of the power to exercise their privacy rights with respect to their health information and by granting “regulatory permission” for third parties to use and disclose that information against the individuals’ wishes.  The violation of the right to medical privacy is further evident by HHS’ failure to require adequate security measures to be in place before the disclosures authorized under the Privacy Rule occur.  

5.     HHS has violated the right to private conversation protected under the First Amendment to the U.S. Constitution (the right to not speak publicly).  

The amended Privacy Rule authorizes the disclosure of information that is the subject of private conversations between patients and practitioners which is likely to have a “chilling” effect.

Recognition of a right to medical privacy at either the federal or state level depends on whether individuals have a “reasonable expectation” of privacy, says  Pyles, the lawyer. If health information can be used and disclosed without consent and over the individual’s objections, even purely as a matter of federal policy, a right of medical privacy is unlikely to be recognized at any level.

The Privacy Rule applies retroactively to permit the use and disclosure of previous health information for patients even though they have not sought further health services, so it is unclear that practitioners would have the opportunity to protect the privacy of their patients’ health information even if they were so inclined.

Each day that these regulations are in effect the privacy of identifiable health information is being lost, according to today’s lawsuit.  

For more information, contact:

Jim Pyles at jim.pyles@ppsv.com

Dr. Deborah Peel at DpeelMD@aol.com