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Princess and the pauper: Both deserve health privacy

Arthur Lazarus, MD, MBA
Physician
March 28, 2024
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The sad news of Princess Kate Middleton’s cancer diagnosis is a sound reminder of the sanctity of a person’s health status and their right to privacy.

I wasn’t sure which adjective I should use to describe Kate’s diagnosis – “sad,” “tragic,” or “devastating.” All are equally true, depending on whose perspective you consider. No doubt a cancer diagnosis is “sad” in the public’s eyes and even harsher in Kate’s. In my opinion, only Kate’s viewpoint matters here. Why should the public have a right to know any details of her diagnosis or even that she has cancer?

Kate “came clean” only as a result of a public frenzy. In her now-viral video declaration that aired March 22, 2024, she acknowledged what the public had long suspected, that she has been ill since her abdominal surgery in December 2023. However, mounting public pressure forced Kate to reveal her diagnosis. Good for her that she still maintained a semblance of control by not revealing the type of cancer, stating only that she was in the early stages of “preventive chemotherapy.”

Between December and now, the royals have been hounded by the press, for example, to explain why the notorious photo of Kate and her children had been altered – she preferred to use the term “edited” – and who was behind the attempt to access her medical records while in hospital. Newsworthy sources tended to blame the general public and 5 billion internet users who basically forced the royals into disclosure and, alternatively, Kensington Palace for being so coy, thinking they could hide the truth.

But whose truth are we talking about? There is only one set of medical facts to explain Kate’s condition, and those facts belong to her and no one else. The roots of medical privacy are deep, dating back to the ancient Greeks. The Hippocratic Oath, which doctors still swear by today, includes a pledge to respect the privacy of patients and keep their information confidential.

Despite the early acknowledgment of the importance of privacy in health care, it wasn’t until the advent of modern technology that the need for formal laws and regulations became apparent. As health care systems began to keep electronic records and share information across networks, the potential for breaches in patient privacy increased dramatically.

In the United States, the Health Insurance Portability and Accountability Act (HIPAA), enacted in 1996, was a landmark piece of legislation designed to address these concerns. HIPAA established national standards for the protection of certain health information and set guidelines for the use and disclosure of patients’ health records. It also gave patients the right to access their own medical records and request corrections.

The origin of HIPAA can be traced back to the early 1990s when health care providers started to move away from paper records and adopt electronic health record systems. This transition raised concerns about the security and privacy of patient information. In response, Congress passed HIPAA, with a key provision known as the Privacy Rule.

The Privacy Rule, which went into effect in 2003, sets standards for protecting individuals’ medical records and other personal health information. It applies to health plans, health care clearinghouses, and providers that conduct certain health care transactions electronically.

Over time, the concept of medical privacy has evolved from an ethical guideline to a legally enforceable standard, reflecting the ever-changing landscape of health care and technology. The only problem is that the law is aimed primarily at those working in the health care profession or tangentially to it. It does not deter the public from unscrupulous means to discover the circumstances behind a celebrity’s health status or to quench their insatiable thirst for answers that can only be obtained by invading someone’s privacy.

The situation with Kate is reminiscent of the undertakings surrounding the Judd family in 2022. Following the suicide death of country singer Naomi, her daughter, and actress Ashley published an essay in the New York Times detailing her stance against Tennessee laws that could publicize investigation files about her mother’s death. “This profoundly intimate personal and medical information does not belong in the press, on the internet, or anywhere except in our memories,” she shared.

Subsequently, a bill was proposed in the Tennessee legislature to limit access to death records, photographs, investigative reports, and 911 calls if law enforcement determines the death was not the result of a crime. However, the bill has yet to see the light of day, receiving pushback from lobbyists, many of them representing the media.

Madelyn Gould, PhD, MPH, the Irving Philips professor of epidemiology (in psychiatry) at Columbia University Medical Center, has extensively documented the phenomenon of suicide contagion for media coverage and was cited by Judd in her attempts to keep the media out of her family’s private affairs. Gould’s research has found an association between celebrity suicide reporting and increases in suicide, known as the Werther effect.

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The “contagion” appears to have spread to other diagnoses, including cancer, and has targeted individuals other than celebrities and royals.

Kate’s current misfortune is strikingly similar to Princess Diana’s death – at the time, a private citizen – in that it was largely related to the paparazzi. The vehicle that Princess Diana was traveling in was being pursued by photographers at the time of the accident. This incident led to stricter laws and guidelines being implemented around the world to protect the privacy and safety of individuals from intrusive media practices.

An official spokesperson said that Kate and William were extremely moved by the global response to her cancer diagnosis while also reiterating their plea for privacy. You can point as many fingers as you want at Kensington Palace, mainstream newspapers, social media, and the general public outcry for telling the truth (or concealing it), but the fact is no person – princess or pauper – should have to beg for their health privacy. It’s no one’s effing business.

Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia, PA. He is the author of Every Story Counts: Exploring Contemporary Practice Through Narrative Medicine, Medicine on Fire: A Narrative Travelogue, and Narrative Medicine: The Fifth Vital Sign.

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