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A recent article in a respected medical journal by a certain prominent senator from the state of Tennessee set forth the medical treatment that might be provided to a hypothetical individual in the year 2015. The article described how this individual avoided an impending heart attack while traveling because his entire medical record was available to nearly every emergency room in the United States, with his permission, under an electronic national health information network. The following scenario sets forth a different hypothetical set of facts under an electronic national health information network based on the Health Information Privacy Rule put into effect approximately 20 months ago. This scenario is considerably less positive, but it illustrates realistically that medical privacy is essential for quality government as well as quality health care. SKELETONS UNEARTHED Sen. Fernlund Farnsworth from the hypothetical state of Columbia decides in the year 2015 that his many years of experience in the Senate and his training as a medical doctor would make him a strong candidate for the presidency in 2016. After he makes his intentions known, he is visited by a representative of the health insurance industry, who presents him with a list of legislative and administrative measures that the industry desires to have passed and implemented if the senator is elected. Being highly principled, the senator states that he will consider the measures, but can make no promises. The insurance industry representative states that it would be in the senator’s best interest to commit to supporting these measures because, otherwise, certain embarrassing information in his medical history could come to light. Outraged, the senator invites the representative to leave his office. Several months later, as the senator is heavily involved in securing his party’s nomination, he receives telephone calls from two national newspapers. They alert him that in the next several days they plan to run articles stating that the senator received treatment and medication for depression and had even briefly considered suicide during that summer after college, when he felt “lost.” As he hangs up the telephone, the senator wonders how the newspapers could have gotten possession of such intensely personal health information from so long ago. Then he remembers the veiled threat from the health insurance representative. He also suddenly remembers that the Health Information Privacy Rule that took effect April 14, 2003, expressly authorized the use and disclosure of virtually all health information to covered entities (including health insurers) and their business associates for routine purposes. No permission from the patient is required, consumers are not entitled to notice, and no accounting of the uses of the medical information is mandated. He recalls that the rule was retroactive and applied to any health information created since the beginning of time. He remembers that the National Electronic Health Information System legislation that he helped enact in 2005 incorporated the principles of the Health Information Privacy Rule. To his dismay, he recalls that in a hearing before a Senate committee on which he served in April 2002, he had supported an amendment to the original Health Information Privacy Rule that eliminated the patient’s right of consent for the use and disclosure of identifiable health information in routine situations. He also remembers, with growing discomfort, that his staff had been informed after the hearing that the Tennessee Supreme Court had issued a decision the prior month in Givens v. Mullikin (2002). The Court held that the implied contract between all patients and their physicians includes a condition that information obtained during the physician-patient relationship will not be released without the patient’s permission. He now begins to realize the wisdom of the holding in Givens. He also recalls the principle contained in the Hippocratic oath, which he took upon graduation from medical school, as well as the ethics standards of the American Medical Association that prohibit the use and disclosure of a patient’s health information without the patient’s consent. In a frantic effort to save his political career, Farnsworth files a lawsuit in federal court seeking to enjoin the publication of his personal health information. The court refuses to grant the injunction based on the 2001 Supreme Court decision in Bartnicki v. Vopper, which held that the media have a First Amendment right to publish information about a matter of public interest, even if the information was revealed unlawfully by a third party. The newspapers publish the account of the senator’s treatment for depression corroborated by detailed information from his medical records, including when and where the treatment occurred, the types of anti-depressant medications prescribed, and how long he took them. His approval ratings in the polls plummet, and he drops from a front-runner in the campaign to being hopelessly out of contention. He now clearly understands the potential for widely accessible personal health information to be used as a political weapon, which he had only vaguely understood before. CHILLING DISCLOSURE Determined to protect his family from suffering the type of humiliation that he has endured, he warns his wife and daughter against providing health information about themselves that could be harmful if disclosed. His wife then postpones for more than a year a screening test for the so-called breast cancer gene until, suddenly, she is diagnosed with breast cancer. His daughter delays telling her doctor about a sexually transmitted disease she has contracted until it leaves her sterile. Farnsworth now painfully realizes the validity of the findings of the Department of Health and Human Services that more than a half-million individuals each year fail to seek earlier treatment for cancer out of privacy concerns. One-third of women who were offered a free genetic screening test for breast cancer by the National Institutes of Health declined to take it, citing concerns about the loss of privacy and the potential for discrimination in health insurance. He also realizes that his daughter has become part of the statistics of under-reported sexually transmitted diseases that the HHS concluded contribute to fertility problems, fetal blindness, ectopic pregnancies, and other reproductive disorders. Even he now feels that, if he had it to do over again, he would be among the more than 2 million people each year, according to HHS estimates, who do not seek treatment for a mental illness because of privacy concerns. To his distress, he also realizes that all of the department’s findings were published in the Federal Register prior to the adoption of the amended Health Information Privacy Rule and enactment of the legislation creating a national electronic health care information network. Why had he not paid attention? Why had he not noted the department’s findings that throughout the nation’s history the personal privacy rights of citizens have been at the forefront of our form of constitutional democracy? Why had he not relied on traditional standards of medical ethics and the oath he had taken upon becoming a physician? Why had he not demanded that protecting the individual’s right to medical privacy be made a principal goal of the health care legislation? Could he have gotten swept up in the rush to adopt an electronic national health information system on the unproven promise that it would reduce health care costs? SCARING PATIENTS Devastated by his personal loss and disappointed in the lost opportunity to serve his country, Sen. Farnsworth returns to private life and resumes his practice as Dr. Farnsworth. One day, he receives a telephone call from the wife of one of his patients, Rodney Rogers. She says that her husband has died of a massive myocardial infarction while traveling on a weekend trip several hundred miles from home. When Farnsworth hears that Mr. Rogers had been experiencing chest pains for several weeks before he died, he asks Mrs. Rogers why her husband had not gone to an emergency room immediately, since nearly every health facility and practitioner (and insurers and all of their business associates) in the United States has access to his medical record. His wife replies that this was precisely the problem. His employer was downsizing, and he believed he would be laid off if it became known that he suffered from heart disease. (Employers have access to medical records under the current system as long as it is part of monitoring an employee benefit plan.) As Farnsworth hangs up, he recalls that there had been growing public concern for years over the loss of personal privacy. One of the principal reasons for that concern was the increasing use of interconnected electronic information systems. He knows that concern is well-founded because cyber incidents and attacks have been increasing at an alarming rate. The federal government has never been able to assure the public that all legislated privacy rights are being protected, and the federal government has concluded that there is no such thing as a totally secure system. He realizes that the HHS was correct when it determined that “the entire health delivery system is built upon the willingness of individuals to share the most intimate details of their lives with their health providers.” For the first time, he appreciates that health information privacy is essential for both a health care system and a government that are responsive to the needs and expectations of the nation’s citizens. With his patients increasingly refusing to confide in him, Farnsworth concludes that he can no longer practice effective medicine. So he retires to his farm, where he spends his remaining days berating himself for not insisting in 2005 that the electronic national health information network be built foremost on the traditional ethical standard that personal health information should not be used or disclosed without the patient’s consent. Sen. Farnsworth missed his opportunity. It remains to be seen whether the current members of Congress will miss theirs. James C. Pyles, a partner in the D.C. firm of Powers Pyles Sutter & Verville, specializes in health law and health system reform. He currently represents plaintiffs in a class action in the U.S. Court of Appeals for the 3rd Circuit seeking to establish a constitutional right of privacy in one’s personal medical data. Pyles can be reached at [email protected].

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