The Washington Post
Sunday, Feb. 8, 1998

Scores of people along the way inspect every patient's data.

Health and Human Services Secretary Donna Shalala

Then there's the $1 billion-a-year data transaction industry, including companies such as IBM, MasterCard and Electronic Data Systems. These companies fear that proposed new forms of data encryption would needlessly complicate their work. "The leaks come from somebody with authorization who abuses it," says Thomas J. Gilligan, a lobbyist for the industry. "It's a people problem, not a technology problem."

There are so many industries built up around the quick transfer of medical information, so many jobs at stake, so many congressional contributions. The continued expansion of a nationwide computerized medical records system, with a growing number of authorized users, seems inevitable. Perhaps the best that privacy advocates can hope for is a set of laws to punish those who abuse data egregiously. Bill Hogan, a privacy advocate at the Center for Public Integrity, puts it bluntly: "There is no real money constituency in favor of privacy, and there is a lot of money in favor of invading it."

In his dissent to Jaffee v. Redmond, the 1996 Supreme Court ruling that supported the confidentiality of psychotherapy, Justice Antonin Scalia made a comment that many therapists would see as an apt and disturbing signal of where their profession is headed. Considering the position of police officer Mary Lu Redmond, whose therapist had refused to surrender notes from counseling sessions that Redmond entered after she shot and killed a young man outside an Illinois apartment complex, Scalia wrote that if Redmond did anything wrong in that shooting, "I see no reason why she should be enabled both not to admit it in criminal court and to get the benefits of psychotherapy . . . It seems to me entirely fair to say that if she wishes the benefits of telling the truth, she must also accept the adverse consequences."

Scalia's legal opinion did not hold sway on the court, but it reflects an unsettling trend in psychotherapy. More and more, as a practical matter, patients are being asked, in exchange for therapy, to accept the surrender of confidentiality -- although not to the extent Scalia might like. Managed mental health care is slowly pushing the patient-therapist relationship toward conversation that begins to resemble that of a police officer and a suspect. Psychiatrists speak of "Miranda-izing" their new patients -- warning them that whatever they say may end up in an information stream to which the patient may have no easy access and over which the patient may have no control.

If the comparison to a police interview seems exaggerated, consider that the FBI and other police agencies are already free to review thousands of records at a time in search of Medicare fraud. No warrant is required unless the health care provider demands one. Under Shalala's proposals, which some privacy experts doubt would survive a constitutional test, law enforcement would need neither warrant nor probable cause to troll through hundreds of thousands of records for evidence of wrongdoing. What, then, would stop police from converting this access into a means to investigate, say, a murder suspect's psychiatric history? Even if the evidence they gather during such a search is not ultimately admissible in court, it could still be very helpful to the early stages of a police investigation.

Companies that manage mental health care engage in a more commonplace invasion of the confidentiality between psychotherapists and patients. According to more than a dozen therapists interviewed for this article, managed care companies -- which fund more than a third of all visits to psychotherapists -- frequently balk at reimbursing extensive therapy without exhaustive information about the ailments of the patients. Where once a simple, standard psychiatric diagnosis was enough for therapy to be authorized, mental health insurers today want the nitty-gritty details, therapists say. "The more specific you are, the more dirty laundry you give them, the more approvals you get," says Jennifer Katze, a Baltimore psychiatrist.

"Hippocrates is 2,000 years old," says one managed care executive. "Medicine isn't one-on-one anymore. It's a team effort."

Therapy patients, as a rule, do not trust the unseen bureaucrats who examine these records, therapists say. Even though the examiners are sworn to uphold confidentiality, patients doubt that absolute confidentiality can be maintained when the circle of access is so large. As a result, patients increasingly pay for therapy themselves, cutting the insurers out of the equation. "Five years ago, only five percent of my patients were self-paying," Katze says. "Now, about half my practice is out of pocket." Although statistics about insured versus out-of-pocket visits nationwide are hard to come by, it does seem clear, as Katze says, that "insurance companies are doing a very good job of deterring utilization of benefits."

"People bare their souls to the psychiatrist. That's how they get better. They tell dark secrets," says another psychiatrist, Richard Epstein. "If you want to scare people out of going to see doctors, start telling them they have no confidentiality and they won't go."

An $11 billion class action lawsuit filed on behalf of about 200,000 psychotherapists charges that the nine biggest U.S. companies that manage mental health care have cost therapists money by denying care and fixing rates. One of the lawsuit's contentions is that intrusive reviews and audits of the patient-therapist relationship are intimidating patients into spending their own cash for confidential sessions. Managed care companies deny this, although they admit to jettisoning people who want "unfocused therapy for interpersonal growth and development," says Clarke Ross, who directs the industry's leading trade group. "Should a third party have to pay Woody Allen's bills?" he asks. Therapists quiver with rage at the suggestion that their work is frivolous, and Ross, who is clearly accustomed to being under attack, acknowledges that some truly ill people have been forced to do without therapy. "We're in a paradigm shift," he says. "Under any rationing system, there are casualties."

It wasn't supposed to be this way. The advance of science and technology was supposed to make medicine more effective and health care delivery more efficient, presumably to improve our health. And we are healthier, many of us. But technological revolutions have a way of shattering social order, and the information revolution has by no means exhausted its potential, certainly not in the field of health care.

This is perhaps nowhere more clear than in genomics, the new frontier of medicine. The thousands of scientists working on the $3 billion Human Genome Project and related endeavors are beginning to redefine the way the field of medicine sees disease, showing how individuals' genetic identities can be road maps to their future health. The more genes that can be identified and understood -- the higher the resolution of the map -- the clearer the steps to prevention or cure. But by the same token, the more information that genes yield to insurers or employers, the more they can make people vulnerable to discrimination.

There may come a day when a laboratory working with a swab of skin cells can produce a readout of a person's entire genetic map. If this information were plugged into a computer network, people with access could guess things about the subject's future that that person had never dreamed about and maybe never wanted to know. A lot of people might want that information: family, employers, insurers, even the bank that holds the person's mortgage. And, of course, the DNA code itself would be pretty complicated, and inevitably some of the readings of it would be incorrect, causing new layers of complication.

For the moment, such comprehensive genome readouts are science fiction. But a relatively cheap screening process for, say, a score of common genetic mutations affecting health might be a decade away. Already, labs have the capacity to conduct more than 400 genetic tests; health insurers have thus far shown little interest, but that seems to be because the tests are expensive and not yet conclusive. There are exceptions: Dozens and perhaps hundreds of people in families with Huntington's disease, a degenerative brain disorder, have been denied health insurance unless they agree to undergo a genetic test. To get coverage, of course, the result must be negative.

Insurers know that the prospect of genetic redlining -- tying a job or an insurance policy or loan eligibility to what a person's DNA says about his life expectancy or future medical bills -- is a repulsive thought to many Americans. Last year alone, state lawmakers around the country introduced 153 bills related to genetic privacy, according to Jennifer Nord, who tracks health policy for the National Conference of State Legislatures. Virginia and Maryland passed laws to prevent genetic discrimination in 1996. Several bills on the issue have been introduced in Congress. And last month Vice President Gore announced the Clinton administration would send a bill to Capitol Hill this year that would prohibit American companies from using genetic tests as a condition for hiring or employee benefits and would bar discrimination against employees with genetic predispositions to a disease. Gore's bill would allow companies to collect and use genetic data about employees on a volunteer basis only to monitor potential workplace health hazards.

Those bills don't address the traditional form of genetic discrimination, the family histories that insurers have always used to deny coverage or charge higher rates. But predicting heredity on that basis is a crapshoot compared with the potential power of genetic testing. Once reliable diagnostic tests for a variety of disease susceptibilities become available, the resulting information will be invaluable to insurers -- as well as to the people who take the tests. The predicament is, once a person's genetic forecast begins to come into focus, who does that person tell? The doctor? The insurer? Siblings who may have the same problematic genes? Where does the right to privacy end and the obligation to disclose a life-threatening condition begin?

The greatest fear is that the economics of health care will discourage people from acquiring knowledge that could save their lives. Consider the story behind the detection of a rare genetic heart disorder known as long QT syndrome. In 1979, a 20-year-old University of Connecticut student named Jack Toran died in his sleep during a camping trip in the Grand Tetons of Wyoming. Nothing showed on his autopsy. Twelve years later, after the family moved to Southern California, his 29-year-old sister, Sharon, also died of heart failure while sleeping. Their mother, Doris Goldman, decided that their deaths were no coincidence and set out to solve the mysterious tragedy, which doctors surmised was the result of an inherited heart arrhythmia. Four years later, thanks partly to Goldman's determination and to an Orange County Register reporter whose story was carried by wire services around the country and seen by other families, a team of University of Utah researchers was able to isolate the genes for long QT syndrome. Doris Goldman was a carrier of one of the genes. Her surviving daughter, Nancy, also had it, and so did Sharon's son, Jacob Turner, born in February 1991.

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