A New York Times editorial on March 7 demanded that Sen. John Kerry (D-Mass.) release his medical records "in considerable detail." In a March 29 story, the Washington Post raised the issue of whether Kerry was physically fit to serve as president, and revealed that Kerry is "compiling more health information for an impending release." President Bush's medical records were recently called into question as part of the scrutiny of his service in the National Guard more than 30 years ago.
While the candidates' health is certainly important to voters, an ad hoc policy in favor of presidential candidates disclosing everything in their medical histories raises significant and troubling privacy concerns. A principle is needed to determine whether and how much medical privacy a candidate for president is entitled to.
We propose a test that weighs the public's right to know about a candidate's fitness to hold office against the candidate's right to withhold health information that is both irrelevant to the performance of the job and would significantly intrude into one's ability to access and receive certain health services for fear of exposure.
Would you vote for a presidential candidate who suffered from a debilitating illness that might impair his or her ability to function, or even prevent him or her from completing a four-year term? Whether the disclosure of medical information is necessary or wise depends on whether the public's right to know trumps the candidate's right to privacy. The American public has repeatedly elected presidents afflicted with incurable and chronic diseases, not out of a lack of concern for presidential health, but because presidential candidates have withheld or fabricated their medical records. Just a few examples:
- Warren Harding, who hid his heart disease, died of heart failure during his first term in office.
- Woodrow Wilson, who hid his chronic circulatory disease and high blood pressure, suffered a major stroke in office. His condition was not made public, and his wife and closest advisers ran the administration. Historians believe his incapacitation during negotiations contributed to the United States not joining the League of Nations.
- Franklin Roosevelt, who had long concealed his polio, hid the hypertension and heart failure that he developed during his third term. He died during his fourth term, after showing signs of mental impairment while participating in major events such as the Yalta conference with Joseph Stalin.
- John F. Kennedy suffered from many conditions, including Addison's disease, an incurable disorder of the adrenal glands. His personal physician lied to the country, saying "John Kennedy has not, nor has he ever had...Addison's disease."
Although some recent presidential candidates have released large portions of their medical records - John McCain, for example, released hundreds of pages documenting his recovery from his time as a prisoner of war in Vietnam - most candidates have refused to disclose detailed medical information, citing privacy concerns. Because HIPAA prohibits doctors and hospitals from releasing medical records in most instances without patient consent, the candidates' medical records can become public only if they release their own information or authorize their doctors to discuss their health with the media.
One modern wrinkle: As our medical system becomes increasingly sophisticated and computerized, we are better able to assess and predict health problems, and health records are more vulnerable to unauthorized disclosure. Some have called for information - including results of genetic and other predictive tests - that might help them foresee how candidates will function in office. Further, with the computerization of medical records, the risk that medical information will leak to the press is growing. Therefore, our nation must develop a coherent policy on the disclosure of candidates' medical records.
Growing Focus on Candidates' Health
The public has always been interested in politicians' health, but until the last few decades the media mostly refrained from publishing sensitive medical information about candidates and politicians. The routine public disclosure of candidates' health information dates to about 1972, when George McGovern dropped his running mate, Thomas Eagleton, after the press revealed that Eagleton had suffered from depression and had undergone electroconvulsive therapy. In 1992, the issue flared when presidential candidate Bill Clinton initially refused to release detailed medical information and fellow candidate Paul Tsongas became the first candidate to publicly acknowledge that he had been diagnosed with cancer. After he lost the nomination, Tsongas admitted that his doctors had lied when they had declared him cancer-free and recommended that Clinton establish a federal commission to develop guidelines for presidential candidates' health disclosures. Tsongas died on what would have been the next to last day of his first term and Clinton never established such a commission.
If pop culture provides any evidence, the volatile issue of presidential candidates concealing medical conditions has entered the public consciousness. In 2002, the popular television series, "The West Wing," focused on the fallout after fictional president Jed Bartlet admitted that he had covered up his diagnosis of multiple sclerosis during his first campaign (he won reelection despite his revelation). And Internet sites now document presidential ailments, ranging from the well-substantiated (FDR's polio) to the bizarre (Andrew Jackson's "slobbering").
Questions about Kerry's prostate cancer and Vice President Dick Cheney's heart disease are percolating in the media's coverage of the current campaign. When President Bush recently released his National Guard records, he refused to make fully public his military medical records; instead, he allowed reporters to inspect them for a period of 20 minutes. (He did, however, make fully available his dental records from that period). White House communications director Dan Bartlett said that the intention was to maintain a "zone of privacy" around Bush. The White House's contradictory approach -- allowing reporters to read, but not copy, the documents -- reflects the difficulty of balancing the president's right to privacy and the public's demand for full disclosure.
Limited Disclosure Recommended
The current thinking on presidential candidates' medical disclosures reflects the tension between the public's right to know and the candidates' right to privacy. The American Medical Association's Council on Ethical and Judicial Affairs published guidelines, updated in 1996, that instruct physicians to "cooperate with the press to insure that medical news is available more promptly and more accurately than would be possible without their assistance" if their patient authorizes them to disclose medical information. The AMA advises physicians not to release any information without patient consent. The American College of Healthcare Executives takes the position that "society's need for information rarely outweighs the right of patients to confidentiality." NIH recommends that "if a patient attracts media attention," NIH will consult with the patient "on what information, other than the fact of hospitalization or condition, may be released in response to a media request."
All of these organizations assume that although presidential candidates, as public figures, have fewer privacy rights than other people, their doctors still should not release their medical information without authorization. The hospital where Tsongas was treated, Dana-Farber Cancer Institute in Boston, developed a particularly detailed disclosure policy for public figures after it was revealed that doctors had lied on Tsongas' behalf. Under the new policy, doctors prepare a summary of the patient's medical record, which the patient may review but may not edit. With patient authorization, the doctors release the statement to the press, and a hospital spokesperson not involved with the public figure's treatment comments on the statement.
Some commentators make the information's relevance, rather than the patient's authorization, the test for disclosure. Boston University professor George Annas, a medical ethicist, argues that "the only medical information to which the public should feel entitled is information that indicates, to a reasonable medical probability, that a presidential candidate will not survive a four-year term, or will not be able to function mentally in a reasonable manner."
Compromised Privacy May Lead to Discrimination, Foregone Care
Protection of privacy is as the first line of defense against discrimination. Once a presidential candidate's medical condition is disclosed to the public, bias and misperception may lead to exaggerated fears. While it may be reasonable for voters to reject a candidate whose severe illness will prevent them from completing a term, many medical diagnoses are not clear cut and some illnesses and conditions may not interfere with a candidate's ability to serve as commander-in-chief. What if a candidate is found to have a genetic marker indicating that they may develop Alzheimer's sometime in the next few decades? It's often impossible to predict whether a given medical condition actually will cause any impairment, and candidates who have no sign of disease may develop catastrophic illnesses. Furthermore, more presidents have died of assassination than of medical conditions. The connection between candidates' health and the chance of death or impairment is tenuous. Mandating disclosure of medical information may not actually help the public choose a president who will remain healthy and competent in office.
Mandating disclosure of medical information could discourage political figures from seeking necessary medical care. Fear of stigma and embarrassment prevents many people from seeking treatment. For an aspirant to political office, the fears are magnified and the stakes are astronomically high. Not surprisingly, several presidential candidates have avoided medical care out of concern that it would leak to the press and harm their chances of election. Hubert Humphrey, who died of bladder cancer, chose to forgo treatment until after he lost the Democratic nomination. Some doctors believe he might have survived if he had been treated earlier. If the public's goal is to elect a healthy president, then any pressure that might have a chilling effect on candidates seeking medical treatment should be regarded warily.
Moving Toward a Standard
The issue of candidates' medical histories - and using genetic information to learn of potential health problems - is gaining prominence, but so far it has been addressed on an ad hoc basic as rumors emerge or particular health conditions are made known. As yet, no agreed-upon principles exist for dealing with a presidential candidate's health status. This policy vacuum has led to a free-for-all atmosphere, as we saw with the 20 minute viewing by the media of President Bush's medical records.
While it is accepted that people who run for political office sacrifice some of their privacy rights, we believe that the wholesale disclosure of presidential candidates' medical records is unnecessary and represents too great an invasion of privacy. Borrowing from the Americans with Disabilities Act's guarantee that people with disabilities will not be barred from employment, candidates should not be subject to discrimination on the basis of medical conditions that will not impair their ability to perform the essential functions of the office.
Professional medical associations must join with the media and consumer advocates to create a standard that guides disclosure of presidential candidates' medical records. As a starting point for such a discussion, we suggest the following policy:
- Candidates must consent to the release of their medical information before it is made public.
- In most instances, a summary of a candidate's medical records should be sufficient. This will protect the confidentiality of a provider's subjective notes.
- A candidate should be able to withhold certain health information from public disclosure if the information is irrelevant to the candidate's ability to perform the duties of president and would jeopardize one's willingness to seek and receive certain care.
Developing a national policy that balances a candidate's privacy with the public's right to know is absolutely essential in this age of heightened public and media scrutiny. The risk is that a rush to expose sensitive information may have a chilling effect on a candidate's (or potential candidate's) willingness to seek medical care. Conversely, the public should be informed about conditions and treatment that are likely to have an effect on a person's ability to serve as president of the United States.
About the authors:
Elizabeth Ida Tossell, the Health Privacy Project's research assistant, contributed to this piece. Ms. Tossell is a graduate of Yale University, and is sharing with HPP her research and writing skills - as well as her passion for improving the world - until she goes to law school next year.
Janlori Goldman is director of the Health Privacy Project. The Health Privacy Project is dedicated to raising public awareness of the importance of ensuring health privacy in order to improve health care access and quality, both on an individual and a community level. Ms. Goldman can be reached by e-mail at jgoldman@healthprivacy.org.
The views expressed in this column are those of the authors and do not represent the views of the California HealthCare Foundation or the Advisory Board Company.