In 1972, Sen. Thomas Eagleton of Missouri was nominated as vice president on the Democratic Party's presidential ticket. A few days later, acting on leaked information, reporters began inquiring about his past mental health.
Their inquiries led to an admission from Eagleton that he had been hospitalized on more than one occasion for mental problems. That revelation ultimately resulted in his resignation from the ticket in one of the more bizarre incidents in American political history.Few things in life are more precious than one's health records, and the growing number of those who have access to them poses problems most Americans can't even imagine.
While the proper use of medical histories saves lives, misuse can cause endless grief and misery.
Take, for instance, a California woman who was denied disability and life insurance because the Medical Information Bureau (a firm that keeps information on your medical records much as credit bureaus track your finances) had provided her prospective insurer with the false report that she suffered from heart problems and Alzheimer's disease. Or the Ohio man who couldn't find employment after a bout with cancer even though five years had passed. Prospective employers were misinformed about his prognosis.
Yet, as in the Eagleton case, there is a fine line to be walked here.
Personal health information is legitimately maintained by physicians, clinics, pharmacies and other medical providers as necessary information. Most states and the federal government require certain records to maintain statistics that can be used to safeguard us all. But the wrongful use of this information is a growing problem that Congress is just now trying to confront.
For the next several months, lawmakers will be wrestling to establish standards to protect the privacy of individual health information on the one hand while balancing the needs of society for this information on the other. The deadline is Aug. 21. If Congress misses that date -- established in a law sponsored by Sen. Edward Kennedy and former Sen. Nancy Kassebaum -- the secretary of health and human services is re- quired to come up with privacy regulations.
According to the American Health Information Management Association, breaches of confidentiality have been widespread. The association recently cited as an example pharmacies that in some states legally sell individual prescription records to drug companies for use in marketing campaigns.
A San Francisco mailing list broker, the association said, sells the names of some 75,000 women who suffer yeast infections and another 65,000 who suffer incontinence or bladder-control problems for $130 per thousand names.
The misuses abound. The medical records of a congressional candidate indicating she had once tried to commit suicide were leaked to a newspaper, and a Colorado medical student sold patient records to lawyers soliciting malpractice plaintiffs. In another case, a public health worker in Florida put out the names of 4,000 HIV-positive patients to two newspapers.
Congressional committees in both houses are working off model standards proposed by HHS Secretary Donna Shalala. They embody a number of principles endorsed by the information association's 38,000 professional members and they make a great deal of sense in this age of computerized risk.
The most important of these, of course, is that health-care information about a consumer should be disclosed for health purposes only. Legislated standards, according to Shalala, should require those receiving health information to take real and reasonable steps to safeguard it from computer hackers and others outside the need to know. Shalala also wants technical security for computerized data, including audit trails showing who accessed the information.
To prevent the kind of mistakes made in regard to the California woman and the Ohio man, Shalala is asking that all patients have access to their own records and the opportunity to correct them.
Perhaps most importantly, the feisty Cabinet officer is demanding criminal penalties including fines and imprisonment for those convicted of breaching the security of medical histories and misusing the information for personal or commercial reasons.
Health experts and the information association maintain rightly that personal privacy interests must be balanced against the national priorities of public health, research and law enforcement.
"The free flow of information with patient authorization is essential to the prompt discovery, investigation and intervention in public health crises," the AHIMA said recently.
The question Congress must face is: Where are the rights of the individual more important than those of the public? It is a difficult question.