Nation debates need for medical privacy

Records: Congress is considering bills that would give doctor-patient relationships the same privileges afforded to attorneys and their clients.

June 27, 1999|By Sarah Kellogg

WASHINGTON -- If you want to keep a secret, it's best not to tell it in your doctor's office.

Medical records routinely end up in the hands of insurance companies, employers, police officers, researchers and drug firms. It's easier to protect the titles of last weekend's video rentals than your test results.

That's because Congress has protected the right to privacy when it comes to video rentals. No federal law protects the confidentiality of personal medical information.

But Congress is hoping to change that. Lawmakers are considering a half-dozen bills that would make the doctor-patient relationship as privileged as that between attorneys and their clients.

"This is an enormously important issue for the country," said Sen. Edward M. Kennedy, a Massachusetts Democrat, who co-sponsored a medical privacy bill. "It's enormously important for privacy, but also enormously important for health care."

Most of the responsibility for medical privacy has fallen to the states. Three years ago, Congress decided to step in. Members wanted a federal standard for medical privacy that was up to date with the latest technology and established a national guideline for employers, medical professionals and health care companies.

Now, facing a fast-approaching, self-imposed Aug. 21 deadline, lawmakers are finding out how hard it is to pass a privacy law.

"Few dispute the need to protect the confidentiality of our personal medical records," said Sen. Robert F. Bennett, the Utah Republican who has led the Senate effort to enact a privacy law.

"But it is very possible in the name of protecting confidentiality to inflict damage on the progress and management of health care in this country," Bennett said.

No simple solution

That's the rub of the debate, say many: It can't simply be about keeping a secret, because there are times when medical records should be released.

Take law enforcement agencies. They would like to have access, through subpoenas and court orders,, to medical data to convict suspects. Scientists contend that specific medical information about a person's health -- with the person's identity hidden -- is useful in research.

"This is actually a very hard problem," said Dr. Gilbert Omenn, the University of Michigan's executive vice president for medical affairs. "There has to be a balance between privacy and confidentiality for patients and the need for research."

That balancing act is made all the more difficult because the bill pits the federal government against the states, which fear that a federal law would wipe out stricter state privacy statutes.

"States have a much bigger stick," according to Montana Insurance Commissioner Mark O'Keefe, who testified at a recent Senate hearing. "Insurers, and others such as hospitals and providers who hold protected health information, are licensed by the state. For repeated violations, those licenses can be revoked."

Even so, many observers feel that the states haven't moved quickly enough to address the problems raised by technology. A slip of a finger can send a medical record onto the Internet in a second.

"Computer technology makes medical recordkeeping vastly more efficient," said Ronald Weich, a legislative consultant for the American Civil Liberties Union. "In the absence of legal safeguards, however, it also allows for virtually unlimited access to medical records without the knowledge or consent of the patient."

Those concerns aren't lost on patients. A recent study by the California HealthCare Foundation found that 56 percent of U.S. adults are concerned that there is no effective way to prevent unauthorized access to medical information.

Protecting information

Many fear that wary patients might have taken steps to protect their health information by not being completely honest with doctors.

"The consequences of people not fully participating in their own care are quite troubling for individual patients as well as the larger community," Chris Koyanagi, director of legislative policy for the Consumer Coalition for Health Privacy, a national coalition of consumer, disability and patients' rights groups, told a Senate committee.

"Incomplete or inaccurate information can hamper a doctor's ability to accurately diagnose and treat a patient, placing a person at risk for undetected and untreated conditions," said Koyanagi.

That's one reason many in Congress believe that they should step in.

If Congress doesn't act, the Clinton administration will issue medical-privacy guidelines.

A GOP-sponsored bill with the best chance of passage awaits approval in the Senate. Partisan bickering has delayed a vote. The bill would:

n Establish a federal standard for protecting the confidentiality of all personal health information.

n Set an individual's right, for the first time in federal law, to inspect, copy and amend his or her patient record.

n Specify the responsibilities of health plans, providers, employers and others who collect, use and maintain the information.

n Require law enforcement officials to establish a legitimate need to view information before acquiring it.

n Establish rules for the use of archival medical records by researchers.

But Democrats want private citizens to be able to freely sue for violations of the law, while Republicans favor a $50,000 limit on compensatory damages and a ban on punitive damages. Democrats want to uphold state laws that give minors significant control over their medical records. Republicans object to that.

"We realize that the wrong information in the wrong hands or even the right information in the wrong hands can cause problems," said Patrick Foley, a spokesman for the Michigan Health and Hospital Association. "We all want to make sure the information remains confidential and protected, from a patient's point of view."

Sarah Kellogg is a reporter for the Newhouse News Service.

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