Miami Herald - Saturday, July 25, 1998
Herald Staff

Is there no privacy left in this, the Internet age? None, or at least little that's not locked up in one's own cranium.

Confide your anguish, as Monica Lewinsky did, and there's a witness if not a tape to be subpoenaed. Get a traffic ticket, and soon you'll be deluged with letters from lawyers wanting to represent you. Pick up a prescription, and six months later a drug company will write to tell you about its new and better pill that you should call to your doctor's attention. Subscribe to a magazine, and soon dozens of catalogs come to you from merchants who've bought the magazine's subscriber list.

Your name may appear in any number of computerized databases. Yet searching them (with or without permission) can be so time-consuming that most of us remain free from all but the occasional intrusion.

Ah, but now comes the government-mandated Medical Identification Number, a sort of super Social Security card. Given your MIN, doctors, hospitals, insurers, and who knows who else will be able to call up your medical history.

Congress mandated MINs to facilitate portability of health insurance when people change employers. In emergencies, the MIN could become a godsend, allowing far-away physicians instant access to medical files listing your allergies, medications, etc. Hospitals and physicians would not have to duplicate tests or records, so you might save money. Data could be aggregated to facilitate public-health research.

But medical records can also come back to bite. Witness the widespread discrimination faced by many who have tested positive for the HIV virus or who have AIDS. There are genuine fears of discrimination by insurers or employers if genetic testing identifies some "predisposition" toward disease or debilitating condition. And, Yes, many people would be embarrassed if family or friends learned more about their health than they care to disclose.

The mandate for MINs was soundly grounded, but clearly Congress must follow up by enacting tight privacy laws. Federal law should make it clear that discrimination based on genetic predisposition is illegal and that medical records are confidential.

Those compiling records must also have responsibility to secure them. Release of records without a patient's consent must be subject to severe penalty -- fines large enough to take the profit out of buying and selling information, and prison sentences long enough to deter those tempted.

By providing more protection from abuse than a patchwork of state laws possibly can, Congress would do much to make today's illusions of confidentiality and privacy a reality.

Always watch for outdated information. This article first appeared in 1998. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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