Tuesday, April 26, 2016

Should Presidential Candidates Be Required to Undergo Preclinical Alzheimer’s Disease Testing?

By Kaitlyn B. Lee

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
Although Steele does not specify in her recommendation what type of testing she believes to be appropriate, someday it may be possible to reliably predict whether an individual will develop Alzheimer’s. During the preclinical stage of Alzheimer’s disease, biomarkers, a general term for biological indicators of disease, begin to present themselves in the body years or even decades before clinical symptoms manifest (Villemagne et al., 2013). Using magnetic resonance imaging (MRI), positron emission tomography (PET), and analysis of specific protein levels (e.g. amyloid beta) in cerebrospinal fluid (CSF), preliminary scientific evidence suggests that biomarkers can be measured to predict an individual’s likelihood of later developing Alzheimer’s, even when he or she may be at present asymptomatic (Cavedo et al., 2014; Langbaum et al., 2013). Although there are no current diagnostic criteria that doctors can use to accurately diagnose Alzheimer’s in a preclinical stage, research is underway to determine standardized biomarker cut-off values and to optimize techniques for CSF assays, PET, and MRI (Sperling et al., 2011). If that possibility is realized, according to Steele’s recommendation, candidates could be required to undergo screenings for Alzheimer’s biomarkers to predict whether they will develop symptoms in the coming years or decades. In this post, I will be discussing testing for Alzheimer’s disease as it relates to predictive preclinical testing for Alzheimer’s biomarkers.

Arguably, Steele’s concerns about testing for Alzheimer’s disease may be more relevant in the upcoming election than ever before, as several candidates in this election have risk factors for Alzheimer’s disease. Age is the biggest risk factor for Alzheimer’s disease, with average risk for a 65-year-old estimated around 10.5% (Sperling et al., 2011). Beyond 65, one’s risk doubles every 5 years, meaning that a 70-year-old has twice the risk of a 65-year-old (Brookmeyer et al., 2011). Three candidates, Donald Trump, Hillary Clinton, and Bernie Sanders, would be over 70 during their term. Bernie Sanders would be the oldest president in U.S. history, ending his term at age 79. In addition, family history is another risk factor for Alzheimer’s. Even if one does not carry the APOE4 gene, an individual has a two- to four- fold risk of getting Alzheimer’s if a first-degree relative has been affected (Fisher Center for Alzheimer’s Research Foundation, 2016). Donald Trump’s father, Fred Trump, suffered from Alzheimer’s for six years before his death in 1999 (Rozhon, 1999). Also, there is some evidence that previous head injury is a risk factor for Alzheimer’s disease, as history of moderate traumatic brain injury (TBI) increases risk by 2.3-fold (Plassman et al., 2000). Hillary Clinton suffered a concussion after falling in December 2012, and although the concussion did not appear to have any lingering effects, it still may put her at higher risk for developing Alzheimer’s later in life (Good, 2014). Given that several candidates in this upcoming election may be at increased risk for developing Alzheimer’s disease, the question of whether or not to test candidates is highly relevant.

Donald Trump, Hillary Clinton,
and Bernie Sanders; images
courtesy of  Flickr user
Michael Vadon and
Whizzers's Place
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
Candidates also have a right not to disclose their Alzheimer’s results. If a candidate voluntarily opted to undergo preclinical Alzheimer’s testing, he or she should have a right to keep that information private. Currently, there are no laws that require the president or presidential candidates to reveal anything at all about their health, as they are covered under the Health Insurance Portability and Accountability Act (HIPAA), which allows patients to control privacy over their health information (U.S. Department of Health & Human Services, 2016). Notably, HIPAA makes some allowances for disclosures in situations where 3rd parties are at risk, such as patients with an infectious disease or patients who express a desire to harm themselves or others. Given this reasoning, one could make the argument that because Alzheimer’s disease could affect a future president’s ability to lead, the public is at risk; however, disclosing candidates’ preclinical Alzheimer’s test results would likely do more harm than good, and ultimately, the public is not at risk due to sufficient federal safeguards in place. Even if a candidate does have preclinical biomarkers for Alzheimer’s disease, he or she may still not develop symptoms for years or even decades (Villemagne et al., 2013); getting a positive result may not even affect his or her presidency, if elected. Further, those without a scientific background may mistake a preclinical diagnosis with a current one, and because Alzheimer’s disease is a relatively stigmatizing label, candidates should not have to endure any potential stigma as a result of his or her candidacy.

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.

References

Alzheimer’s Association. “2015 Alzheimer’s disease facts and figures.” Alzheimer’s and Dementia 11 (2015): 332-384. PubMed. Web. 20 Mar. 2016.

"Alzheimer’s Disease." Alz.org. Alzheimer's Association, n.d. Web. 14 Feb. 2016.

Arias, J. (2014). Translating Preclinical Test Results into “Real World” Consequences. The Neuroethics Blog. Retrieved on March 23, 2016, from http://www.theneuroethicsblog.com/2014/05/translating-preclinical-test-results.html.

Brown, Teneille R. “Double Helix, Double Standards: Private Matters and Public People.” Journal of Health Care Law and Policy 11.2 (2008): 295-376.

Brookmeyer, R., D.A. Evans, L. Hebert, K.M. Langa, S.G. Heeringa, B.L. Plassman, and W.A. Kukull. “National estimates of the prevalence of Alzheimer’s disease in the United States.” Alzheimer’s and Dementia 7.1 (2011): 61-73.

Cavedo E., S. Lista, Z. Khachaturian, P. Aisen, P. Amouyel, K. Herholz, C.R. Jack, Jr., R. Sperling, J. Cummings, K. Blennow, S. O’Bryant, G.B. Frisoni, A. Khachaturian, M. Kivipelto, W. Klunk, K. Broich, S. Andrieu, M. Thiebaut de Schotten, J.F. Mangin, A.A. Lammertsma, K. Johnson, S. Teipel, A. Drzezga, A. Bokde, O. Colliot, H. Bakardjian, H. Zetterberg, B. Dubois, B. Vellas, L.S. Schneider, and H. Hampel. “The road ahead to cure Alzheimer’s disease: development of biological markers and neuroimaging methods for prevention trials across all stages and target populations.” Journal of Prevention of Alzheimer’s Disease 1.3 (2014): 181-202.

Good, Chris. "Hillary Clinton: 'No Lingering Effects' From 'Serious' Concussion." ABC News. ABC
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Karlawish, Jason. “Addressing the ethical, policy, and social challenges of preclinical Alzheimer’s disease.” Neurology 77.15 (2011): 1487-1493. PubMed. Web. 23 Mar. 2016.

Langbaum, Jessica B.S., Adam S. Fleisher, Kewei Chen, Napatkamon Ayutyanont, Francisco Lopera, Yakeel T. Quiroz, Richard J. Caselli, Pierre N. Tariot, and Eric M. Reiman. “Ushering in the study and treatment of preclinical Alzheimer’s disease.” Nature Reviews Neurology 9.7(2013): 371-381. PubMed. Web. 23 Mar. 2016.

Plassman, B.L, R.J. Havlik, D.C. Steffens, M.J. Helms, T.N. Newman, D. Drosdick, C. Phillips, B.A. Gau, K.A. Welsh-Bohmer, J.R. Burke, J.M. Guralnik, and J.C. Breitner. “Documented head injury in early adulthood and risk of Alzheimer’s disease and other dementias.” Neurology 55.8 (2000): 1158-1166. PubMed. Web. 23 Mar. 2016.

Pratt, Rebekah, and Heather Wilkinson. "A Psychosocial Model of Understanding the Experience of Receiving a Diagnosis of Dementia." Dementia 2.2 (2003): 181-99. Web. 26 Feb. 2016.

Rozhon, Tracie. "Fred C. Trump, Postwar Master Builder of Housing for Middle Class, Dies at 93." The New York Times. The New York Times, 26 June 1999. Web. 10 Mar. 2016.

Sperling, R.A., P.S. Aisen, L.A. Beckett, D.A. Bennett, S. Craft, A.M. Fagan, T. Iwatsubo, C.R. Jack, Jr, J. Kaye, T.J. Montine, D.C. Park, E.M. Reiman, C.C. Rowe, E. Siemers, Y. Stern, K. Yaffe, M.C. Carrillo, B. Thies, M. Morrison-Bogorad, M.V. Wagster, and C.H. Phelps. “Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease.” Alzheimer’s and Dementia 7 (2011): 280-292.

Steele, Dayna. "Steele: Presidential Candidates Should Be Tested for Alzheimer's." Houston Chronicle. N.p., 5 Feb. 2016. Web. 14 Feb. 2016.

Streiffer, Robert, Alan Rubel, and Julie Fagan. "Medical Privacy and the Public's Right to Vote: What Presidential Candidates Should Disclose." Journal of Medicine and Philosophy J. of Med. & Philosophy NJMP 31.4 (2006): 417-39. Web. 28 Feb. 2016.

“The Constitution of the United States,” Amendment 4.

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Villemagne, V.L., S. Burnham, P. Bourgeat, B. Brown, K.A. Ellis, O. Salvado, C. Szoeke, S.L. Macaulay, P. Maruff, D. Ames, C.C. Rowe, C.L. Masters, Australian Imaging Biomarkers and Lifestyle (AIBL) Research Group. “Amyloidβdeposition, neurodegeneration, and cognitive decline in sporadic Alzheimer’s disease: a prospective cohort study.” The Lancet Neurology 12.4(2013): 357-367. PubMed. Web. 20 Mar. 2016.

Zanetti, O., S.B. Solerte, and F. Cantoni. “Life expectancy in Alzheimer’s disease (AD).” Archives of Gerontology and Geriatrics 49 (2009): 237-243. PubMed. Web. 20 Mar. 2016.

Want to cite this post?
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

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