Does the public’s right to know trump a politician’s right to medical privacy?

On Wednesday, Feb. 15, Sen. John Fetterman (D-Pa.) checked himself into Walter Reed Medical Center for the treatment of clinical depression. It was a courageous step for a leading political figure, but not one without political risk.   

Last year, while in the throes of a Senate campaign, Fetterman suffered a stroke. His stroke, and by innuendo his ability to function, became election issues. Despite these developments, he was elected to serve in the Senate. Recent reports indicate that the senator meets with his chief of staff and works every day in the hospital while he receives treatment for his depression. 

We have come a long way as a society in appreciating the impact of brain disorders and recognizing resilience in individuals who persevere despite their medical challenges. But we have miles to go. 

In 1985, after identifying a polyp in the president’s colon, Captain Walter Karney, chief of internal medicine at the Bethesda Naval Medical Center, said this about the president’s health: “President Reagan continues to enjoy good health. His overall physical and mental condition is excellent. I am especially impressed with the fact that his blood pressure is lower than a year ago — this is quite remarkable.”

By today’s standards of disclosure, that statement is stunningly opaque to the point of being misleading. 

There have been major changes in medicine from both clinical and technological perspectives over the last couple of decades. Further, life expectancy at birth in the U.S. is approximately 79 years. Americans are not only living longer but are more active in the political and public arenas well into their late 70s and 80s. 

That said, it should be acknowledged that increasing age is an established risk factor for frailty that is associated with fall risks, concussions, weakness and cognitive dysfunction, and several medical disorders. 

Let’s focus on a few major disorders that impact middle-aged and elderly adults, beginning with Alzheimer’s Disease (AD), the most common cause of irreversible cognitive decline in the U.S. The brain changes responsible for AD, or dementia, precede the emergence of clinical symptoms and signs by approximately two decades. In other words, many adults who are currently symptom free have the disease — they just don’t know it yet. 

In addition to bedside cognitive screening tests that can be completed in 10-15 minutes, there are commercially available tests of genetic risk, and brain scans that can visualize and measure levels of the protein amyloid, the biological marker associated with the disease. Also, it is likely that we will soon have reliable blood tests for amyloid. Using these measures collectively, one can develop a composite risk score for AD that will provide potentially useful insights into brain function before the condition manifests clinically. 

Comparably, objective risk profiles can be developed for both cardiovascular and cerebrovascular disease by combining clinical examinations with relevant laboratory tests and genetic profiles. 

The biomedical technologies that make this possible are readily available and routinely used to detect early and preclinical disease states in many areas in medicine. These include mammograms, colonoscopies and pap smears. They can be lifesaving when used prudently, and yet we are reluctant to use this approach in the case of certain brain disorders that have a major impact. 

Recently, a presidential candidate suggested that candidates above the age of 75 should receive cognitive screening as part of the political process. During election campaigns, candidates frequently question their opponent’s fitness to hold high office on a partisan basis where the truth is often distorted to serve a political objective. Behind the polemics, however, there are serious issues that need to be considered.   

Many older Americans remain active in public and professional lives and make important contributions. Discriminating against those who are above a certain age is wrong and misguided. Ageism is clearly alive and well in society.  

However, we have passed the days when routine physical exams, standard laboratory tests and a resting electrocardiogram are seen as providing adequate information on health status. Modern medicine could lend clarity to and provide a more comprehensive health profile of individuals, including brain health, that would add a scientific component to the public debate. The early detection–early intervention paradigm that is embraced in much of modern medicine should include brain disorders.  

The primary fault line and source of tension revolves around the question of what information is confidential and private versus what the public has a right to know. The issues become even more sensitive when they involve the brain, as it controls higher cortical functions such as attention, judgment, planning, social behavior, language and memory.  

While these issues are deeply personal and delicate, scientific progress cannot be denied, and we currently live in a brave new world where modern science and older concepts of privacy may be on a collision course, at least in the public arena. 

It is in the national interest to have a clear-eyed policy debate that includes the risks as well as the benefits of using modern science to provide insights into the brains and minds of those we elect, or plan to elect, to high public office. An organization with national credibility, such as the National Academy of Sciences, can potentially take the lead on this matter and help answer the question of whether validated technologies, when used appropriately, can add a scientific dimension to the public debate.   

This debate will not be an easy one. It will be tricky and fraught with many challenges, distortions and prejudices. But it is an important conversation to have and a step in the right direction.  

The scientific community can either stand on the sidelines and complain about the public debate or get actively involved and help guide the process. Science has an important role to play in informing the public debate and fighting stigma and prejudice. If the “Fetterman moment” teaches us anything, it is that that moment has arrived.  

Anand Kumar, MD, MHA, is head of the department of psychiatry at the University of Illinois, Chicago, and a past president of the American Association for Geriatric Psychiatry. Sally Weinstein, Ph.D., is an associate professor of psychiatry at the University of Illinois, Chicago. Drs. Kumar and Weinstein are director and associate director, respectively, of the University of Illinois’s Center for Depression and Resilience (UICDR).