EXPOSED

Computer technology, managed health care and genetic science are all undermining the American tradition of medical privacy, in the name of progress. What can -- or should -- we do about it?

One afternoon last November, a managed care supervisor telephoned a psychiatrist in a close-in suburb of Washington and told him to expect a visit from a "utilization reviewer." These days, managed health care companies routinely demand a great deal of information before agreeing to pay for a course of psychiatric care. Therapists are asked questions such as: Is the patient dangerous? Depressed? Guilty? Anxious? A victim of incest? A perpetrator of sexual assault? A utilization review goes even further. In this case, the company had ordered an examination of the records of several of the psychiatrist's patients whose therapy had lasted longer than the insurer felt was normal. The utilization reviewer would enter the therapist's office and pick over charts and notes -- notes that might include details like the name of a patient's sexual tormentor, or the specific nature of his violent fantasies.

As it happened, the patients that the utilization reviewer was concerned about included a wife-beater, a closet homosexual, and two women who were carrying on long-term extramarital affairs, one of them with a prominent Washington personage. And although the patients had all signed blanket consent forms at the beginning of therapy, the psychiatrist says he was quite certain they wouldn't want to let a stranger rummage through their files and their lives with a fine-toothed comb.

"I was in a terrible bind," says the psychiatrist, who discussed the case on condition that he not be identified. If he told his patients about what the insurer intended to do, the patients might become angry or depressed. They might withdraw from therapy -- as a few had in the past when told about the audits -- or threaten to sue him, or badger the managed care company, although any such attempt at recourse would probably only expose their private lives further. On the other hand, if the psychiatrist concealed the audit from his patients, he would maintain tranquillity on the couch and protect his relationship with the managed care company, which might otherwise drop him from the list of physicians it permits its members to consult.

It was an awful decision. "Our whole relationship with the patients is supposed to be based on trust," the psychiatrist says. He agonized -- and in the end chose the path of least resistance, with a guilty conscience. "I have children to put through college," he says. "When I retire, maybe I'll be more brave."

Americans have long assumed that their medical records are their own business. After all, doctors still take the Oath of Hippocrates, which states in part that "whatsoever I shall see or hear in the course of my profession . . . I will never divulge, holding such things to be holy secrets." A solid body of court cases and state laws underlines the tradition of doctor-patient confidentiality and the principle that patients' medical records cannot be disclosed publicly without their permission. But as in so many other areas of American life in the digital age, medical privacy is a tradition under assault. It's not that the laws or ethical codes are being repealed -- it's that broad technological, scientific and economic forces are overpowering the old rules.

Many people would be surprised at just how exposed they are. Millions of individual medical records float around these days in a vast electronic network that serves both commerce and scientific research. The information zips around the country, speeded by computers at every stage. Computers help diagnose disease, monitor patients, organize the data about their conditions, and transmit the information to managed care networks, medical research networks, pharmaceutical benefits managers and other outposts of America's increasingly wired health care system. Along the way, thousands of eyes scan this data. The eyes may belong to health researchers seeking improved treatments, or to corporate managers bent on slashing costs, or to drug company marketers looking for new customers. Some of the records are even available through the Internet, part of a $40 billion medical information industry. In the Information Age, as confidences are entrusted to anonymous datamongers, we are all becoming a little like Blanche DuBois: We rely on the kindness of strangers.

In one sense, all of this is a symptom of progress. Computer-driven technologies that can read and transmit and discriminate are the dynamic heart of the country's fabulously modern health care system. The free flow of medical information has many undeniable benefits: a national epidemiological network that efficiently detects and tracks diseases and drug side effects; a more-or-less transparent billing system that makes it easier to fight Medicare and other health care fraud; and more accurate, more effective research by universities and drug companies into the risks and benefits of competing therapies and medications.

But there are drawbacks, too. The more information available, the greater the opportunity for it to be abused. For one thing, embarrassing records can be leaked. Florida Gov. Lawton Chiles and New York Rep. Nydia Velazquez are two of the more prominent politicians whose psychiatric records circulated without their permission during election campaigns in the last decade. They were victims of a black market in which almost any patient's records can be bought for about $250, according to private investigators. That is how Arthur Ashe's AIDS diagnosis got out, and those of other celebrities as well. High-tech or low-tech, leaks are endemic. A recent informal study in the Annals of Internal Medicine found that in 1 out of 14 elevator rides in Philadelphia hospitals, doctors, nurses or other staff made a major breach of confidentiality in casual conversation. There are employees in the emergency rooms of big-city hospitals who earn more from passing patient information to ambulance-chasing attorneys than they do from their paychecks, says Columbia University professor Paul D. Clayton, who also runs the information systems at Columbia-Presbyterian Medical Center in New York.

Public figures are not the only victims, and the disclosures are not always clearly illegal. Consider Bill Warner, 75, a Baltimore World War II veteran who took a phone call one day in 1995 from his urologist, Horst Schirmer. The agitated doctor reported that Warner's recent prostate surgery, of all things, had just been the topic of discussion at an open court hearing. It turned out that another urologist, Brad Lerner, who was being sued for malpractice, had dug up Warner's records as part of his defense. Schirmer, who was testifying as an expert witness, had been so stunned when a lawyer dangled Warner's confidential pathology report in front of him that he simply refused to discuss it. Ultimately, Warner sued Lerner for invasion of privacy -- his case is pending before Maryland's highest court, the Court of Appeals -- but so far, lower courts have ruled that Lerner had the right to make use of the private records under a loophole in a 1990 state confidentiality law that allows sued doctors to look into any patient's records -- even patients they have never met.

Warner sued because he was teed off, because of the principle of the thing. "It's just a question of, 'Why me?' " he says. "My medical history is no one else's business in this wide world."

But that's not necessarily true any longer. There are thousands of people who consider patient data their business these days. Drug manufacturers such as Merck & Co. have bought pharmaceutical benefits management companies in recent years and have used the patient and prescription lists to tout their products. Companies selling baby products use hospital birth records to market their goods to parents just as they arrive home with their newborns. There have been reports that Internet sites offering information about certain diseases have solicited data from cyber-visitors and then sold that information to companies marketing drugs or therapies.

F inally, of course, there is the routine exploitation of medical records to weed out expensive patients -- the refusal of insurance to the sick or, increasingly, to those whose genes predispose them to illness. American health insurance is based on risk underwriting, which essentially means that the people who pay for health care try, to the extent possible, to avoid taking on the sick. In this often pitiless health care economy, many people -- even those with stable jobs and benefits -- feel vulnerable about the potential loss of their insurance, should some corporate-defined "preexisting condition" be disclosed to the wrong party at the wrong time. Indeed, a central predicament of the country's emerging digital medical information network is that, at the very moment when more and more information is becoming available to more and more eyes, the consequences of the data's misuse are potentially more severe than ever before.

New privacy laws have been enacted in response to public outcry over the perceived injustices of for-profit health care, and more laws are on the way. But can any law really protect people from invasions of doctor-patient confidentiality, given the technological, scientific and economic changes underway?

Sometime in the next 18 months, Congress will probably pass a federal privacy law aimed at limiting the authorized uses of medical information and providing for legal redress in the event of abuse. Such a privacy bill -- or, failing congressional action, creation of federal regulations -- is mandated by August 1999 under the Kennedy-Kassebaum health care reform law of 1996. One goal of that legislation was to speed the computerization of health care records, and privacy advocates inserted language to ensure that computerization was accompanied by better protection.

T he Clinton administration's aim is to help create a seamless nationwide records system that eventually may involve a "universal patient identifier," the equivalent of a Social Security number for each patient. The goal of the identifier system would be to improve communication among the many agencies and companies involved in health care. It could help control health care costs, help combat fraud, help check the spread of disease, and support authorized medical research into new cures and treatments for dire conditions, its proponents believe.

Last September, Health and Human Services Secretary Donna Shalala took a stab at formulating the privacy protection people should expect in this coming world of fully automated records. "Twenty-five years ago, our health care privacy was protected by our family doctor, whom we trusted not only because of the Hippocratic Oath and the fundamental ethics of medicine -- but because we knew them," Shalala said in testimony before the Senate Labor and Human Resources Committee. "Today, the revolution in our health care delivery system means that instead of Marcus Welby, we have to place our trust in entire networks of insurers and health care professionals." The challenge, she said, is to "balance protection of privacy with our public responsibility to support national priorities -- public health, research, quality care, and our fight against health care fraud and abuse."

Sharon Turner died at 29 in 1991, just months after giving birth to Jacob.

Some privacy advocates read a quiet menace in Shalala's words. In bland official language, Shalala erased the traditional standard of a "compelling public interest" to justify a governmental invasion of privacy, and replaced it with a broader balancing act, says Beverly Woodward, a Brandeis University sociologist. It was the jurist for whom Woodward's university is named, Supreme Court Justice Louis Brandeis, who in a 1928 ruling described the "right to be let alone" as "the most comprehensive of rights and the right most valued by civilized men." Today, there are so many interested parties in the medical privacy debate -- dozens of industries that depend on access to sensitive information -- that in developing any new law, an awful lot of balancing is going to have to be done. At times it has seemed that individual privacy will get balanced right out of existence.

That's just the point, says Georgetown University law professor Lawrence Gostin. Privacy has disappeared, he says -- get used to it. After reviewing the issues on several panels over the last decade, Gostin says that what strikes him is the "mind-boggling information out there" on the expanding digital health care networks. Some people argue that computers are no more vulnerable to attack or exploitation than the old system of paper records, and in fact are more easily protected because of electronic security devices and audit trails. Gostin doesn't buy that. No amount of security can protect individuals from leaks by authorized users, he says. And a talented hacker can break into a computer system almost no matter how sophisticated it is; Pentagon computers suffered an estimated 250,000 attacks in 1995, according to a General Accounting Office report, and 65 percent of the hack attacks were described as successful to some degree.

What's needed, Gostin argues, is for someone to tell the public, plainly, clearly, that absolute privacy does not exist and certainly will not in health care's brave new world, a world so different from the one Brandeis knew. "There are trade-offs between privacy and the goods society gets from medicine. And information is the life's blood of the modern health care system," he says. "The public should get reasonable assurances that when their personal information is collected, the health care system will treat it with respect, store it securely, and disclose it only for important health purposes." And there should be laws in place to give victims of data abuse easy access to the courts, he says.

What sorts of potential abuses might people have to worry about? Some are already visible. Let's say you own a medium-size company and are concerned about rising health insurance premiums. What to do? You ask your insurer for the records of your employees to find out who's running up the bills. Under the Americans With Disabilities Act it is illegal to fire an employee because of such an audit. But discrimination may be difficult to prove, and not all illnesses qualify as disabilities under the law.

More and more employers have information about their employees' health, and more and more of them use it in personnel decisions. In part, workers are victims of their own success. Union drives during the 1960s led to the creation of employee assistance plans with on-site clinics and nurses. Around the same time, companies were given tax and regulatory incentives to run their own insurance programs, a process that accelerated during the 1980s as health insurance costs skyrocketed. Some companies have fire walls to keep employees' medical records away from their supervisors. Some don't. David F. Linowes, a University of Illinois public policy professor who has been studying workplace privacy since the early 1970s, says that in his 1996 survey of Fortune 500 companies, a third of the 84 respondents said they used medical records to make employment-related decisions.

"The thrust is that employers don't hesitate to use this information," says Linowes. "It's something that enters the equation concerning their investment in personnel."

In a complaint filed in D.C. Superior Court last fall, a cancer patient named Patricia Scott charges that her former employer, the Service Employees International Union, did just that. She says the union canceled her health insurance and eventually dismissed her because it had changed to a self-insured health plan and didn't want to cover her expenses. The union denies the charge, saying it was dissatisfied with Scott's job performance and that she refused to provide adequate medical proof of her disability. Scott's attorney, Diane Seltzer, says such cases are becoming more common.

In Philadelphia, supervisors at the Southeastern Pennsylvania Transit Authority paid Rite Aid Pharmacy to supply medications to its workers in exchange for a breakdown on who was using what drugs. When executives found that an employee was using an AIDS medicine, they informed his supervisor. The employee sued for invasion of privacy but lost; the judge said the company had a legitimate business reason to delve into his records.

Then there is the story of a 46-year-old Washington man known in D.C. court records as John Doe. During the eight years he has been HIV-positive, he has managed, with the help of the drug AZT, to remain healthy except for two brief hospitalizations; he has also confined knowledge of his illness to a few close friends and relatives. In April 1996, Doe spent several days at the Washington Hospital Center for treatment of severe fevers and headaches diagnosed as a form of meningitis. To keep his debts down, Doe had been working two jobs -- behind a desk at the Office of Personnel Management by day and behind a broom at the State Department by night. He alleges that a fellow State employee, Tijuana Goldring, who moonlighted as a receptionist at Washington Hospital Center and who knew Doe had been treated there, somehow caught a glimpse of his private medical records and passed word of his condition to co-workers. Doe says that after his condition became known, colleagues went out of their way to avoid him and some began wearing plastic gloves even on cigarette breaks. They teased him relentlessly, he says, asking, "How's your health?" or saying, "I hear you got the alphabet disease."

Goldring's attorney says she denies having breached any confidentialities or spread any rumors concerning Doe's health. The hospital says Goldring had no access to any computerized or other patient records, and that there's no evidence she spoke to any hospital staff about Doe's condition. "We are very confident we will win this case if it comes to court," says the hospital's attorney, Leo A. Roth Jr. Hospital officials say they follow to the letter the District's confidentiality rules, which are among the strictest in the nation in requiring patient consent to pass along medical information.

Doe says he must cope with both anxiety about the future and humiliation on the job. "People make snide remarks about homosexuals being the carrier of the virus and joke about me dying," Doe wrote in his complaint. "I feel violated and naked before these people."

As Congress debates how to protect people like Doe with a new federal law, it will be pushed and pulled by special interests that have a financial stake in the unfettered flow of medical information. Shalala's proposals -- which were based on months of consultation with privacy experts, industry and Congress -- aim to secure medical data with new record-keeping and computer access rules; to prohibit the disclosure of medical information outside the health care arena; to allow patients access to their own records; and to strengthen punishment for abuses. Most players in the various health care industries want some kind of confidentiality law, if only to reassure patients. But all of Shalala's specific proposals are entangled in a web of interests.

The core problem is that the very basis of managed care -- which now accounts for 80 percent of employer-based coverage -- is shared information. Whether it is to improve care, as the insurers would claim, or to cheapen it, as their critics charge, managed care companies intervene at every stage to evaluate whether patients are getting the treatment the insurers prescribe. Scores of people along the way inspect the patient's data. "Hippocrates is 2,000 years old," says Samuel W. Warburton, chief medical officer of NYLCare Health Plans Inc., a large New York managed care company. "Medicine isn't one-on-one anymore. It's a team effort." Warburton fears the chilling effects of a confidentiality law that could make doctors skittish about talking to other doctors, to case reviewers, benefits managers and others. "Communication is bad enough as it is," he says.

Health care providers are currently spending around $2 billion a year to build new information networks that support approaches such as "disease management," which consists in part of computerized programs that help prod sick people into getting particular kinds of treatment. At Harvard Pilgrim Health Care in Boston, for example, information specialists scanned the company database and located all patients who had had expensive emergency room visits more than three times. Many of them, it turned out, were alcoholics. Thereafter, when one of the patients entered an emergency room, his or her primary physician was notified and instructed to talk to the patient. Was this a valuable public health measure or a violation of confidentiality? It's a judgment call: "I don't know how the alcoholics react when their doctor calls and says, 'I hear you were in your third automobile accident,' " says John Ludden, Harvard Pilgrim's senior vice president for medical affairs. "This is an active intervention."

Health and Human Services Secretary Donna Shalala

Under Shalala's proposals, companies could send mailings or make phone calls to remind patients to schedule appointments for preventive care. But they couldn't sell the patient lists to a pharmaceutical company using them for direct mail purposes. Some pharmaceutical companies aren't happy about that, and the industry as a whole is even more concerned about Shalala's suggestion that patients be given more of a right to control how their data are used. Pharmaceutical firms, which use huge amounts of patient data in research, worry that patients will irrationally resist the use of their records, thus skewing study results.

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.

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.

Georgetown University law professor Lawrence Gostin argues that absolute privacy does not exist.

Doctors said Jacob Turner would not be troubled by the disorder as long as he took beta blockers. Indeed, he was a healthy, energetic boy. "I'm more worried he's going to fall off a swing and crack his head than anything else," says his grandmother. But there was a catch: When Jacob's father, a self-employed computer consultant, applied for health insurance for himself and his son in late 1994, Blue Cross of California refused to issue a standard policy to his son, saying he had a preexisting condition -- his very genetic makeup. It wasn't until 1996, more than a year after California's legislature passed a genetic anti-discrimination bill, that Blue Cross relented and informed the Turners it would cover Jacob in standard fashion.

"To be involved in identifying the cause of a killing disease and then be punished because you're trying to prevent symptoms from occurring in your grandson was a mind-blowing experience," says Doris Goldman. "The genetic revolution is wonderful, but we haven't addressed the problems that are going to arise."

The genetic revolution has truly arrived, with all its promise and headaches, for the approximately 10,000 women who have tested for genetic mutations that predispose women to breast cancer -- women who have been forced to wrestle with excruciating questions about the consequences of genetic knowledge. Thousands of other women have decided not to get tested at all. At times, it seems that the tendency to want to know -- or to avoid knowing -- is itself part of a person's genetic makeup.

In the case of a woman named Polly, it was like this: She was the youngest of four girls, and by the time she was 59 she had lost all three of her sisters to breast cancer. At the urging of her physician, she had a prophylactic double mastectomy in 1985. By then her family was part of a large NIH study into heritable breast cancer. Around 1995, the study began offering its subjects the option of being tested for the genetic mutations believed responsible for many breast and ovarian cancers -- about a tenth of all the breast and ovarian cancers in the United States.

Polly sought a test enthusiastically and encouraged her children to do the same. But her daughter Sherry opted out. A 38-year-old Navy employee with a young daughter and a son, Sherry was perfectly aware of the dangers of her family history. She respected her mother's choice to get a double mastectomy and declared that if she were convinced that she had the problematic gene, she would do the same. One thing stopped her short: She did not want her genetic condition to get into a medical database.

"If I want to do something with the information, I'll have to tell my doctor," she recalls reasoning at the time. "And once I tell him, he's obliged to put it in my record. And then, if I ever leave my government job, I have the potential of losing both insurance and employment."

Polly did take the test, though, and to her surprise it came up negative, which means that Sherry and her children presumably will be spared -- although being free from heritable breast cancer is not the same as being free from all cancer, or even all breast cancer. But if her mother hadn't decided to take the test, Sherry still would be uncertain about her predisposition to a fatal disease -- and all because she was worried about the economic consequences of knowledge. "To have the information and not use it is no good," she explains. "So I'd rather not have the information."

Privacy operates in concentric circles. There is privacy from society, privacy from friends, privacy from the family, and finally, privacy from one's self. Whether or not genetic information is used against people for economic reasons, some would argue that it is still wrong to force people to take genetic tests.

There is something profoundly unnerving about the ability to foresee or even glimpse the future. In literature, it is generally an attribute of witches and wizards and people who sell their souls to the devil. Even if the idea of genetic fate is commonly exaggerated -- genes are only one factor in a person's future and not always the most important one -- the mere awareness that a life-threatening disease lurks in the genes is enough to alter a person's sense of self.

At what age should a mother reveal her own susceptibility to breast cancer to a daughter? At 21? At 15? And if the mother is a potential cancer victim, should she force her daughter to be tested, and when? An army of genetic counselors and medical ethicists are currently knitting their brows over these issues.

George Annas, a Boston University ethicist, believes that no testing should be done before the age of consent, unless the relevant disease strikes before that age. But some families with the breast cancer gene mutation have had their teenage daughters tested. "A surgical oncologist told me that maybe they should screen all the girls and remove the breast buds of the ones that are positive," Annas recounts. "It's child abuse. The next stage will be to screen fetuses for breast cancer. And yet it seems very natural if you're involved in prevention. Doctors will do it for all the good reasons unless there are laws against it . . .

"We've got to have the right not to know."

In all of these problems, of course, lie trade-offs -- between privacy and progress, between the interests of industries and the interests of individuals. Much of the current upheaval seems irreversible -- genetic mapping is an inevitable aspect of the advance of scientific knowledge, and the computerization of medical records is an inevitable aspect of the advance of technology. Yet it is worth remembering that some of the most difficult predicaments here are the consequence of a specific political decision: the collective American choice not to adopt a program of universal health care. Because 43 million Americans have no health insurance, and because many millions more fear becoming one of their number, a sick person in this country is threatened by information in a way that the sick in Europe or Japan or Canada are not.

And so many people fear the power of their files: "It may seem paranoid, but if information could come back to haunt you or your kids, you aren't going to want it on the record," Annas says. "This country has decided it doesn't want universal health care, at least for now, and that means we've got a real privacy problem."

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