The Reporters Committee for Freedom of the Press submits these comments in response to the invitation for comments by the Department of Health and Human Services on standards for privacy of individually identifiable health information. The announcement appeared November 3, 1999, and the deadline for comments was later extended to February 17, 2000.

The Reporters Committee is a voluntary, unincorporated association of news editors and reporters dedicated to defending the First Amendment and freedom of information interests of the print and broadcast media.

We run a hotline and other services for journalists all over the country who daily encounter legal difficulties in gathering and covering the news. We submit these comments in their interest.

Purpose of these Reporters Committee comments

The Reporters Committee is very, very concerned that the rules proposed by the Health and Human Services Administration do not adequately protect public interests in some patient information. We are concerned that if bright-line rules are adopted, journalists will no longer be able to perform their vital role of keeping the public informed about important patient matters and medical issues of concern to the public.

The rules would hinder reporting on several levels.

Initially we are concerned that hospitals will be limited in providing the standard directory information that they have customarily provided the public, information that is important not only on a regular day-to-day basis, but that is critical to public understanding of tragedies and disasters.

Secondly we are very concerned about the extremely harsh punishments for disclosures of patient information. Journalists have often reported information provided to them by whistle-blowers within the hospital community, and they have often sought answers to questions from health care providers that have helped provide the public with stories on important medical matters. Although these rules would not prohibit many of the communications between staff and journalists, health care workers will be very wary of providing any information at all given the hefty penalty they face for providing prohibited information. The conclusive nature of these rules that punishes good works as well as bad is unfortunate and runs counter to the public's interest.

Thirdly, the rules would prohibit and austerely punish any undercover investigative work by journalists even though journalists have, in the past, uncovered stories about extremely sinister medical practices that could not have been revealed in any other way. These rules fail to acknowledge the First Amendment's protections for newsgathering and provide no exception or defense for undercover reporting -- even when that reporting clearly benefits society rather than harming it.

Finally, these rules do not allow any balance of public and privacy interests that may surround the category or circumstance of particular patients. The public has an undeniable interest in the health of its leaders and the fitness of persons -- such as airline pilots -- who are entrusted with the well-being of others. There is a different and special interest in the health of patients whose legal status is dependent on the state of their health. And the public may have a special interest in medical and identifying information about persons who have contracted deadly and communicable diseases.

Directory information is important to the public and vitally so in times of tragedy or disaster.

Unfortunately, many tragedies touch the lives of an entire community and the community, as well as the patients who may be directly injured, has a real and significant interest in knowing and knowing quickly the parameters of those tragedies.

Working closely with hospital administrators, journalists have played an important role in describing for the community the numbers of people who are injured, some description of who is injured, and the category of medical seriousness ascribed to the injuries by the hospital. Hospitals have confirmed the admission of named individuals and have, in these special instances, announced the admission and general status of individuals once families were notified.

To the best of their abilities, reporters have quickly served the public with news about incomprehensible tragedies such as the school shootings in Jonesboro or Columbine, the bombing in Oklahoma City, and in the multiple murders of the past decade in workplaces, fast food restaurants and day care centers.

Similarly they have used their skills and training to provide information to an anxious community in the face of accidents and natural disasters. When a school bus overturns, a mine caves in, or a bridge collapses, the community understandably does not want to wait to know what has happened to whom.

Friends and families of potential victims will either receive news gathered by reporters from communications offices at the hospitals which treat the actual victims, or they will accept rumor and gossip in the place of news, needlessly increasing anxiety and stress, and in some cases causing mobbing of the institutions which could actually provide information.

A troubled community is made more so when it cannot find or identify its victims or activate the support systems that neighbors, clergy and others might provide both the victims and their families. Overwhelmingly, the community's need to learn about the victims of tragedy is well-meaning and positive, allowing the gathering of resources to provide help.

It is unthinkable that in such a situation, a hospital communicator would be subject to a $25,000 fine for providing general information about a victim.

Maine legislators suspended a law similar to these rules in January 1999, less than a month after it went into effect. The public insisted to state legislators that it be changed. Even its sponsors called for its suspension. That state law severely restricted information that hospitals and health-care workers could report about patients without their written consent and promised to levy fines of up to $50,000 for infractions.

(According to one newspaper report, fear of incurring the penalty so chilled the speech of hospital personnel, that staff at one hospital actually refused to provide a body to a funeral home for fear of disclosing that the deceased had been a patient there.)

The media could not get or provide the community with information on shootings or traffic accidents. Clergymen were not allowed to see patients and florists could not deliver flowers.

These rules would inhibit accurate, careful reporting on medical issues that are extremely important to the public.

Very little truly personal information about patients is sought by the media or provided by health care givers. Both groups acknowledge and respect the privilege that patients enjoy of confiding in their physicians. However, if absolute silence is required by law of any person familiar with the treatment of patients, it is likely that the real protection will be of the errant doctor, hospital, or the health care provider and at the expense of the patient or future patients. Oversight of medical procedures has been shown to be important time and again.

The heavy penalties effected by these rules will discourage individuals from helping to expose problems in health care that can be vital to the public's well-being. Fear of punishment will chill the best intentions of workers who believe they have truthful information that should be shared with the public. These penalties will prevent the kinds of stories that, in the past have brought public attention to great needs for reform.

It is already enormously difficult for reporters to overcome privacy restrictions in gathering information about what has happened to patients.

Consider numerous news stories concerning the secret victims of scientific medical research:

Albuquerque Tribune reporter Eileen Welsome several years ago learned about government-sponsored plutonium experiments on humans in an obscure footnote to a report on animal experiments. She learned that the experiment had been reported in a science magazine and mentioned in a congressional report, but the study was remote and none of the patients who were injected with plutonium were identified. After years of dogged research of any details she could find that might help her locate these patients, she tracked down 17 of the 18 subjects who had been used by the government in its experiments.

Their names were never available to her from government files because disclosure would have intruded upon their personal privacy.

Welsome's articles on the victims of the research provoked changes in openness policies at the Department of Energy and an apology by President Clinton on behalf of the United States for its moral lapse in using these patients for radiation experiments.

In her Pulitzer Prize-winning articles for the Tribune and in her recent book, Welsome also documented numerous other radiation tests by physicians on humans. The impact of her findings -- what makes her reporting relevant to the public -- comes from her discussions about the tests with the victims and their survivors.

These proposals will further inhibit reporters such as Welsome from learning the identities of patient victims and reporting on abuses in medical research that should no longer occur.

Perhaps these rules presume that oversight of medical matters will occur within the medical community or the government, but that is not the same as public oversight. Reporting that disclosed to the public the 40-year Tuskeegee study cast that project in a realistic light showing it to be unacceptable to the public even though it was conducted by the government and endorsed by the medical community.

Many years ago Associated Press reporter Jean Heller publicized the death count in the study by the the U.S. Public Health Service of untreated syphilis in 400 poor black men in Macon County, Ala. The Public Health Service studied the effects of the disease on them for decades without offering them penicillin that could have cured them.

Although the experiment was documented in medical journals and had been presented at American Medical Association meetings, the study, begun in 1932, was not halted until it was reported by the news media in 1972. A Centers for Disease Control committee had decided to continue it as late as 1969.

Problems of secrecy in medical research continue. Last year in "Dying for a Cure," U.S. News reported on lethal inadequacies in a system designed to protect cancer patients in research trials. Journalists have most recently reported auditor findings concerning patient deaths in genetic research experiments.

Patient privacy rules may actually hinder research by scientists as well as reporting by journalists. In September, The Philadelphia Inquirer published a series on medical mistakes, including extensive reporting on deaths and injuries to hospital patients from drug errors. When the Senate Health and Education Committee heard testimony in February on proliferation of errors in prescribing drugs, Professor Richard Platt, research director at Harvard Pilgrim Healthcare in Boston and a professor at Harvard Medical School told the Committee that the fervor to protect medical privacy could restrict access to patient records and preclude research that could produce more data on drug errors.

The rules would penalize whistle-blowers whose cooperation is often vital to news reporting about serious wrongdoing.

One of the reporters on the Orange County Register's Pulitzer Prize-winning probe of a fertility clinic thanked former patients and "the people who worked there, who had the courage to step forward" for making that newspaper's investigation possible. Its 1995 series documented thefts by fertility specialists of human eggs and embryos at the University of California-Irvine's Center for Reproductive Health.

With the help of concerned clinic staff the newspaper published more than 230 fertility fraud stories, exposing coverups, intimidation of clinic employees and hush money payments. Among the direct results of the reporting were the closing of the clinic and the issuance of new fertility clinic guidelines by the American Medical Association.

The newspaper was not insensitive to the privacy concerns raised in its stories, even though the public's interest in disclosure clearly outweighed any privacy interest. It used only sources willing to go on the record. And it enlisted the help of an ethicist for guidance on contacting and questioning victims of the egg thefts.

The rules would penalize undercover reporting and eliminate stories that cannot be obtained by any other means.

Then a reporter for The Chicago Sun-Times, Pam Zekman reported in the late 1970s on clinics which performed abortions on women who were not even pregnant. Her series curbed that practice and definitively led to much needed reforms.

Her series was based upon confidential medical records of abortion patients smuggled to her from an undercover operative. She deleted all names of patients from her reporting but it was important both to the accuracy of her reporting and her ability to legally protect herself to have the copies. Clinics could easily have destroyed the records after the series ran.

Newsgathering enjoys some protection under the First Amendment that would allow vital reporting such as Zekman's. Few journalists engage in undercover reporting but there are some stories, such as Zekman's, which simply could not be reported except by surreptitious gathering of information.

The rule should be changed to accommodate such watchdog activities. Neither the agency nor the journalists should be required to undergo a court test to determine whether the media can gain information fraudulently in order to report on important public health issues. Strict application of these rules would interfere with newsgathering. The fear of prosecution under these rules would chill reporting of important medical information even if reporters were legally entitled to gather information in spite of these rules.

Disclosure of medical records on certain individuals may serve a public interest so strongly that the need for privacy is outweighed by the need for disclosure.

The public has a strong interest in the physical fitness of individuals entrusted with its well being and in certain individuals who may escape prosecution under the law because of medical waiver.

Rules governing disclosure should allow a balancing of interests by medical personnel in a position to disclose information, rather than mandate a blanket rule against any disclosures absent written permission of a patient.

It is not difficult to imagine scenarios in which the public's strong interest in the fitness of public leaders such as the President and Vice President and candidates for those offices could outweigh some considerations of privacy.

The public has a legitimate interest in the physical fitness of pilots, and others entrusted with public transportation, and in ensuring that adequate medical checks for persons in such jobs exist. Last year New Orleans Times Picayune reporter Jeffrey Meitrodt reported on the laxness of a charter bus company in allowing a sickly, drug-dazed bus driver to operate a vehicle. Meitrodt's story appeared after the death of the driver and 22 of his passengers, but shows the public's strong interest in the oversight of the medical condition of such drivers.

The public has a strong interest in the medical records underlying decisions to forego prosecution and other legal decisions. Because of its privacy laws, the British government will not release underlying medical records it says show that former Chilean dictator Augusto Pinochet is too ill to be extradited to Spain to stand trial on charges of human rights abuses.

To the enormous frustration of human rights advocacy groups, the British based the decision not to extradite Pinochet on the secret findings of a medical panel and have refused to release any of Pinochet's records, citing medical privacy.

Finally the actual medical condition of a patient may be of special interest to the public because he or she has contracted a deadly and contagious disease and may present a danger to the public.

The Reporters Committee greatly appreciates the Department's consideration of these comments.

Rebecca Daugherty
FOI Service Center Director, Reporters Committee