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Genetic Testing as Part of a Plan for Preemptive Suicide in the Face of Impending Dementia

  • Ethics in Genetic Medicine (L Parker, Section Editor)
  • Published:
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Abstract

Genetic testing is an important factor in an array of biomarkers that help patients and clinicians to estimate an individual’s risk for developing Late-Onset Alzheimer’s Disease. This array of tests makes more feasible the possibility of choosing to end one’s life before one becomes demented. These new possibilities raise important ethical issues. Should clinicians, researchers, and regulators seek to erect roadblocks in the path of individuals who seek this information, in a paternalistic attempt to thwart rational suicide? Do volunteers in research have a right to the “return of research results,” to use those results as they see fit? Should we think of suicide in the face of impending dementia as one rational choice to preserve one’s identity before the loss of self that is associated with Alzheimer’s, or should we continue to view suicide as either selfish, or deranged, or both?

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References

Papers of particular interest, published recently are highlighted as: • Of importance

  1. http://www.alz.org/facts/downloads/ff_infographic_2015.pdf.

  2. http://www.alz.org/facts/downloads/ff_infographic_2015.pdf.

  3. http://www.hsph.harvard.edu/news/press-releases/alzheimers-international-survey/.

  4. Wachbroit R. The question not asked: the challenge of pleiotropic genetic tests. Kennedy Inst Ethics J. 1998;8:131–44.

    Article  PubMed  Google Scholar 

  5. • Parens E, Johnston J. As tests to predict Alzheimer’s emerge, so may debates over the right to die. 2011. http://healthland.time.com/2011/06/08/ An essay in the popular press that lays out important public policy questions engendered by new tests for AD.

  6. Grubs RE, Parker LS, Hamilton RJ. Subtle psychosocial sequelae of genetic test results. Curr Genet Med Rep. 2014;2:242–9. doi:10.1007/s40142-014-0053-7.

    Article  Google Scholar 

  7. http://hbhegenetics.sph.umich.edu/research-project/risk-evaluation-and-education-alzheimers-disease-study.

  8. Green RC, et al. 2009 Disclosure of APOE genotype for risk of Alzheimer’s Disease. N Engl J Med. 2009;361:245–54.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  9. http://www.genome.gov/27554790.

  10. Twamley W, Ropack SAL, Bonci MW. Neuropsychological and neuroimaging changes in preclinical Alzheimer’s disease. J Int Neuropsychol Soc. 2006;12:707–35.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Ray S, Britschgi M, Herbert C, et al. Classification and prediction of clinical Alzheimer’s diagnosis based on plasma signaling proteins. Nat Med. 2007;13:1359–62.

    Article  CAS  PubMed  Google Scholar 

  12. Bateman RJ, Xiong C, Benzinger TL, et al. Clinical and biomarker changes in dominantly inherited Alzheimer’s Disease. N Engl J Med. 2012;367:795–804.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  13. Rabin LA, Wang C, Katz M, et al. Predicting Alzheimer’s Disease: neuropsychological tests, self-reports, and informant reports of cognitive difficulties. J Am Geriatr Soc. 2012;60:1128–34.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Annas GJ, Elias S. 23andMe and the FDA. N Engl J Med. 2014;2014(370):985–8.

    Article  Google Scholar 

  15. Laterza A. Complying with the Unclear: The Need for FDA Regulation For the Direct-to-Consumer Genetic Testing Industry, 2015. Law School Student Scholarship. Paper 680. http://scholarship.shu.edu/student_scholarship/680.

  16. Turna R. Adding Alzheimer’s risk option, 23andMe revives questions on utility of DTC genomics.. Genome Web. https://www.genomeweb.com/dxpgx/adding-alzheimers-risk-option-23andme-revives-questions-utility-dtc-genomics. Accessed 20 April 2011.

  17. Karczewski K, Tirrell R, Cordero P, et al. Interpretome: A Freely available modular, and secure personal genome interpretation engine. In: Pacific Symposium on Biocomputing. 2012. pp. 339–350.

  18. Su Y, Borry P, Otte IC, Howard HC. “It’s our DNA, we deserve the right to test!” a content analysis of a petition for the right to access direct-to-consumer genetic testing. Pers Med. 2015;10(7):729–39.

    Article  Google Scholar 

  19. Wegwarth O, Schwartz LM, Woloshin S, et al. Do physicians understand cancer screening statistics? A national survey of primary care physicians in the United States. Ann Intern Med. 2012;156(5):340–9.

    Article  PubMed  Google Scholar 

  20. http://www.genomes2people.org/reveal.

  21. http://a4study.org.

  22. Wade N. Genome of DNA pioneer is deciphered. New York Times. June 1, 2007.

  23. • Dworkin R. Life’s dominion: an argument about abortion, euthanasia, and individual freedom. New York: Alfred A. Knopf; 1993, p. 199. One of America’s most important philosophers tackles some of the knottiest issues in bioethics. He specifically discusses the case of a person who is currently “pleasantly demented,” and whose advance directive calls for the least possible medical support.

  24. • Latham SR. Living wills and Alzheimer’s disease. Quinnipac Probate Law J. 2010;23:425–31. Using a family member as an example, a legal scholar and bioethicist shows why advance directives may have little to contribute when a person develops dementia.

  25. Cooley DR. A Kantian moral duty for the soon-to-be demented to commit suicide. Am J Bioeth. 2007;7:37–44.

    Article  PubMed  Google Scholar 

  26. Meilander G. I want to burden my loved ones. First Things. 1991;16:12–4.

    Google Scholar 

  27. Post SG. The Moral Challenge of Alzheimer Disease. 2nd ed. Johns Hopkins University Press; 2000.

  28. • President’s Council on Bioethics. Taking care: ethical care-giving in our aging society. Washington, DC: President’s Council on Bioethics; 2005. The Council argues against focusing on patient autonomy, in favor of a focus on providing the elderly with appropriate care and compassion.

  29. • Dresser RS. Dworkin on dementia: elegant theory, questionable policy. Hastings Cent Rep. 1995;25:32–38. Dresser, a critic of autonomy-focused ethics, debates with Dworkin over the case of the pleasantly demented woman whose advance directive calls for as little medical support as possible.

  30. Robertson JA. Second thoughts on living wills. Hast Cent Rep. 1991;21:6–9.

    Article  CAS  Google Scholar 

  31. • Davis DS. Alzheimer disease and pre-emptive suicide. J Med Ethics 2014;40:543–9. doi:10.1136/medethics-2012-101022. Davis makes the argument for pre-emptive suicide in the face of impending dementia, claiming that only suicide before one begins to become demented will save one from a protracted decline and dependency.

  32. Dresser R. Pre-emptive suicide, precedent autonomy and preclinical Alzheimer disease. J Med Ethics. 2014;40:550–1. doi:10.1136/medethics-2013-101615.

    Article  PubMed  Google Scholar 

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Correspondence to Dena S. Davis.

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This article is part of the Topical collection on Ethics in Genetic Medicine.

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Davis, D.S. Genetic Testing as Part of a Plan for Preemptive Suicide in the Face of Impending Dementia. Curr Genet Med Rep 4, 86–91 (2016). https://doi.org/10.1007/s40142-016-0101-6

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