Kaitlyn “Kai” Lee is a Project Coordinator in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She helps to investigate the ethical, legal, and social issues of integrating whole genome sequencing into clinical care as part of MedSeq, a project funded by the NIH’s Clinical Sequencing Exploratory Research (CSER) program. Kai earned her BA in Neuroscience from Middlebury College and hopes to continue her education through a joint JD/MPH program.
In her op-ed published in the Houston Chronicle, “Presidential candidates should be tested for Alzheimer’s,” radio and television personality turned author and keynote speaker Dayna Steele advocates testing presidential candidates for Alzheimer’s disease and releasing their results to the voting public. Steele believes voters have a right to know their future president’s Alzheimer’s test results, as she maintains, “I want to know that the candidate I choose not only supports my priorities but is also of sound mind – a mind that will last through four or eight years” (Steele, 2016). Drawing upon her own personal experience with her mother’s Alzheimer’s disease, Steele describes the progression of her mother’s disease from simply forgetting things, to driving while lost, to total mental and physical incapacitation. Steele cites her mother’s rapid 3-year decline to assert that an affected person in a position with as much power as the President would be devastating for the country, arguing that we can avoid such a “catastrophe” by insisting candidates be tested for Alzheimer’s disease and disclose those results to the public.
Presumably, Steele is particularly concerned about testing presidential candidates for Alzheimer’s disease because Alzheimer’s is a progressive neurodegenerative disease that slowly degrades memory, intellectual abilities, and eventually, physical abilities. Alzheimer’s is the most common form of dementia, a catchall term for deterioration of cognitive ability that is severe enough to affect one’s daily life. Because Alzheimer’s is a chronic neurodegenerative disease, symptoms worsen over time. A 2015 report released by the Alzheimer’s Association describes the current understanding of the symptoms and progression of Alzheimer’s disease. In the early stages of the disease, a person can manage independently but may have some trouble planning and organizing and may suffer minor memory lapses, such as forgetting words or misplacing valuable objects. As the disease worsens, individuals exhibit memory loss of significant people or events, confusion with time or place, and personality changes. Finally, as the disease becomes more severe, physical abilities, such as walking, talking and eating deteriorate, and the person will require full-time assistance to perform basic functions until eventual death (“2015 Alzheimer’s disease facts and figures,” 2015). The rate of disease progression differs between individuals, but typically, a person will live 3 to 10 years after clinical symptoms begin (Zanetti et al., 2009).
|Neurodegeneration in Alzheimer's Disease,|
image courtesy of Wikipedia
Despite the fact that a number of candidates in this upcoming election may be at increased risk for Alzheimer’s disease, upon closer examination of the respective rights of presidential candidates and the voting public, requiring candidates to undergo testing is problematic. Although Steele believes that the public has a right to know their candidates’ Alzheimer’s test results, the public’s right to know is not enough to outweigh individual candidates’ 4th amendment right to protection against unreasonable government searches and right to medical privacy. The idea of a public’s right to know information about the health of candidates arises from the philosophy that citizens have the right to be governed only with their consent, and that consent is only meaningful when citizens are making informed decisions (Streiffer et al., 2006). Voters consider health to be a key factor in determining a president’s ability to lead, as suggested by results of a 2004 CNN/Gallup poll cited by Brown (2008), in which 96% of those polled felt that the president’s general health was important or very important to being a good president. Especially given that developing Alzheimer’s disease would severely affect a future president’s ability to lead, the case for the public’s right to know candidates’ Alzheimer’s preclinical test results is compelling.
However, voters’ right to know is in conflict with candidates’ 4th amendment right and right to medical privacy. This conflict is a point of divide among voters; although the CNN/Gallup poll found that almost all of those polled believe it is important to have a healthy president, they have mixed responses about how the health of the president should be ensured. The majority of those polled (61%) believed that the president should retain the same rights as citizens to a private medical record, while a substantial minority (38%) advocated for releasing all health information that might affect the president’s ability to lead (Brown, 2008). I believe that candidates’ 4th amendment rights and rights to medical privacy override voters’ right to know, even when the information may affect a future president’s ability to lead, as in the case of preclinical Alzheimer’s testing.
Under the 4th amendment, people are guaranteed that the “right to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures [by the government], shall not be violated, and no warrants shall issue, but upon probable cause” (US Const., amend. IV). Assuming that candidates are entitled to these rights, the question is, would requiring preclinical Alzheimer’s testing be considered an “unreasonable” search for an ostensibly healthy candidate (Brown, 2008)? I would say so. Testing for Alzheimer’s disease is a psychologically distressing process that has potentially harmful and life-changing consequences, especially given that it is a terminal illness with no treatment at this time (Karlawish, 2011). Receiving an Alzheimer’s diagnosis has been shown to result in shock, fear, anxiety, and depression (Husband, 1999; Husband, 2000; Pratt & Wilkinson, 2003). Because candidates are not yet elected, there is a possibility that they will have to resume their normal lives after the election, and they should not have to bear the life-altering consequences that accompany a terminal diagnosis as a result of their run for presidency. Thus, even if a presidential contender has one or more risk factors for Alzheimer’s disease, an increased risk is not enough to justify the potential psychological distress that may accompany the testing process or preclinical diagnosis. Furthermore, because family history is a risk factor for Alzheimer’s disease, candidates’ family members may also get unwanted and unwarranted risk information, which can in turn cause psychological distress. Clearly, preclinical Alzheimer’s disease testing is an “unreasonable search” that can cause harm not only to candidates but also their family members, and thus, government mandated testing would be in violation of the 4th amendment.
|US Constitution, image courtesy of Flickr user Lou Gold|
Given that requiring candidates to undergo Alzheimer’s testing is unethical, could we elect a president who may develop Alzheimer’s disease during his or her term? Possibly, but I would argue that the consequences are not as dire as Steele fears, due to sufficient federal safeguards in place. For example, the President does not make decisions unilaterally, and our system of checks and balances would prevent implementation of any irrational decisions. In the end, if the President were found to be demonstrating diminished capacity, the vice president would succeed him or her under the 25th amendment. Ultimately, given the federal safeguards in place, Alzheimer’s disease is not a significant threat to the presidency, and thus, requiring candidates to be tested is both unethical and unnecessary.
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Lee, K.B. (2016). Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/04/should-presidential-candidates-be.html