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MEDICAL RECORDS CONFIDENTIALITY AND GENETIC PRIVACY

Description of issue. It is not an exaggeration to state that our video rental records have had more privacy protection than our medical records in the past. The Clinton Administration's Health and Human Services Department attempted to rectify this situation by developing privacy regulations as required by the passage of HIPAA, the Health Insurance Portability and Accountability Act.

The HIPAA regulations, effective in April 2003, make significant strides for American healthcare consumers, especially in requiring healthcare institutions to give patients notice of their information practices, and in enabling individuals to gain access to their own medical records. But the Bush Administration has rolled back some of the privacy provisions due to pressure from the healthcare industry, in particular the patient consent requirements.

Another privacy issue on the healthcare front is genetic profiling. The use of genetic data to discriminate in both employment and health insurance is of growing concern to consumers, healthcare professionals, and policymakers alike. In 2001, U.S. News & World Report reported that the railroad company Burlington Northern secretly conducted genetic tests on employees who had filed worker's compensation claims for carpal tunnel syndrome. The company's intention was presumably to be able to reject some claims because of genetic predisposition to the condition, despite the fact that predisposition to this ailment is questionable. (Dana Hawkins, "The dark side of genetic testing," U.S. News & World Report, Feb. 19, 2001)

Looking ahead. Most individuals consider their medical information to be among the most sensitive of any information about them. And many are under the mistaken impression that the Hippocratic oath still holds true today.

Whatsoever things I see or hear concerning the life of men, in my attendance on the sick or even apart therefrom, which ought not be noised abroad, I will keep silence thereon, counting such things to be as sacred secrets. Hippocrates, 4^th Century B.C.

But in truth, one's medical information is an open book in our far-flung healthcare system -- from medical providers, to insurance companies, to self-insured employers, to laboratories, and to payment companies, medical transcriptionists, pharmacies and pharmacy benefits systems, government regulators, and more.

The HIPAA regulations that become effective in 2003 will no doubt serve as a catalyst for healthcare institutions to scrutinize and improve the handling of their patients' medical records. But societal pressures, especially by employers who foot the ever-rising health insurance bill for millions of individuals, will continue to erode what little medical privacy individuals have.

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