Journal of Bioethical Inquiry

, Volume 5, Issue 2–3, pp 193–207

The Individualist Model of Autonomy and the Challenge of Disability

Article

Abstract

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision.

Keywords

Disability Autonomy Genetics End-of-life care Ableism 

References

  1. 1.
    Kant, I. (1959). Foundations of the metaphysics of morals (translated by Lewis White Beck). Indianapolis: Bobbs-Merrill.Google Scholar
  2. 2.
    Mill, J. S. (1999). In E. Alexander (Ed.), On liberty. Peterborough, ON: Broadview.Google Scholar
  3. 3.
    Donchin, A. (2000). Autonomy, interdependence, and assisted suicide: Respecting boundaries/crossing lines. Bioethics, 14, 187–204.PubMedCrossRefGoogle Scholar
  4. 4.
    Sherwin, S. (1998). A relational approach to autonomy in health care. In S. Sherwin (Ed.), The politics of women’s health: Exploring agency and autonomy (pp. 19–47). Philadelphia: Temple University Press.Google Scholar
  5. 5.
    Beauchamp, T., & Childress, J. (1994). Principles of biomedical ethics (4th ed.). New York: Oxford University Press.Google Scholar
  6. 6.
    Schmitt, R. (1995). Beyond separateness: The social nature of human beings—their autonomy, knowledge, and power. Boulder: Westview.Google Scholar
  7. 7.
    Hartsock, N. (1983). Money, sex and power. New York: Longman.Google Scholar
  8. 8.
    Young, I. M. (1990). Justice and the politics of difference. Princeton: Princeton University Press.Google Scholar
  9. 9.
    Mackenzie, C., & Stoljar, N. (Eds.) (2000). Relational autonomy: Feminist perspectives on autonomy, agency, and the social self. New York: Oxford University Press.Google Scholar
  10. 10.
    Friedman, M. (2003). Autonomy, gender, and politics. New York: Oxford University Press.Google Scholar
  11. 11.
    Tremain, S. (2006). Reproductive freedom, self-regulation, and the government of impairment in utero. Hypatia, 21, 35–53.PubMedGoogle Scholar
  12. 12.
    Andrews, L., & Hibbert, M. (2000). Courts and wrongful birth: Can disability itself be viewed as a legal wrong? In L. P. Francis & A. Silvers (Eds.), Americans with disabilities: Exploring implications of the law for individuals and institutions (pp. 318–330). New York: Routledge.Google Scholar
  13. 13.
    Hildt, E. (2002). Autonomy and freedom of choice in prenatal genetic diagnosis. Medicine Health Care and Philosophy, 5, 65–71.CrossRefGoogle Scholar
  14. 14.
    Robertson, J. (1994). Children of choice: Freedom and the new reproductive technologies. Princeton: Princeton University Press.Google Scholar
  15. 15.
    Morgan, K. (1998). Contested bodies, contested knowledges: Women, health, and the politics of medicalization. In S. Sherwin (Ed.), The politics of women’s health: Exploring agency and autonomy (pp. 83–121). Philadelphia: Temple University Press.Google Scholar
  16. 16.
    Buchanan, A., Brock, D., Daniels, N., & Wikler, D. (2000). From chance to choice: Genetics and justice. Cambridge: Cambridge University Press.Google Scholar
  17. 17.
    Zeiler, K. (2004). Reproductive autonomous choice—A cherished illusion? Reproductive autonomy examined in the context of preimplantation genetic diagnosis. Medicine Health Care and Philosophy, 7, 175–183.CrossRefGoogle Scholar
  18. 18.
    Lippman, A. (1998). The politics of health: Geneticization versus health promotion. In S. Sherwin (Ed.), The politics of women’s health: Exploring agency and autonomy (pp. 64–82). Philadelphia: Temple University Press.Google Scholar
  19. 19.
    Wachbroit, R. (1996). Disowning knowledge: Issues in genetic testing. Report from the Institute for Philosophy and Public Policy, 16, 14–18.Google Scholar
  20. 20.
    Wartenberg, T. (1990). The forms of power: From domination to transformation. Philadelphia: Temple University Press.Google Scholar
  21. 21.
    Shakespeare, T. (2005). The social context of individual choice. In D. Wasserman, J. Bickenbach, & R. Wachbroit (Eds.), Quality of life and human difference: Genetic testing, health care, and disability (pp. 217–236). New York: Cambridge University Press.Google Scholar
  22. 22.
    McLeod, C. (2002). Self-trust and reproductive autonomy. Cambridge: MIT.Google Scholar
  23. 23.
    Tong, R. (1997). Feminist approaches to bioethics. Boulder, CO: Westview.Google Scholar
  24. 24.
    Sherwin, S. (2003). The importance of ontology for feminist policy-making in the realm of reproductive technology. Canadian Journal of Philosophy, supplementary volume 28, 273–295.Google Scholar
  25. 25.
    Davis, L. (1995). Enforcing normalcy: Disability, deafness, and the body. London: Verso.Google Scholar
  26. 26.
    Lippman, A. (1991). Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine, 17, 15–50.PubMedGoogle Scholar
  27. 27.
    Fricker, M. (1999). Epistemic oppression and epistemic privilege. Canadian Journal of Philosophy, Suppl 25, 191–210.Google Scholar
  28. 28.
    Amundson, R. (2005). Disability, ideology, and quality of life: A bias in biomedical ethics. In D. Wasserman, J. Bickenbach, & R. Wachbroit (Eds.), Quality of life and human difference: Genetic testing, health care, and disability (pp. 103–124). New York: Cambridge University Press.Google Scholar
  29. 29.
    Brock, D. (1993). Life and death: Philosophical essays in biomedical ethics. Cambridge: Cambridge University Press.Google Scholar
  30. 30.
    Boorse, C. (1977). Health as a theoretical concept. Philosophy of Science, 44, 542–573.CrossRefGoogle Scholar
  31. 31.
    Brock, D. (1995). Justice and the ADA: Does prioritizing and rationing health care discriminate against the disabled? Social Philosophy and Policy, 12, 159–185.PubMedGoogle Scholar
  32. 32.
    Brock, D. (2000). Health care resource prioritization and discrimination against persons with disabilities. In L. P. Francis, & A. Silvers (Eds.), Americans with disabilities: Exploring implications of the law for individuals and institutions (pp. 223–235). New York: Routledge.Google Scholar
  33. 33.
    Beeson, D. (1989). Social and ethical issues in the prenatal diagnosis of fetal disorders. In B. Ashley & K. O’Rourke (Eds.), Health care ethics: A theological analysis (pp. 79–86, 3rd ed.). St. Louis: Catholic Health Association of the United States.Google Scholar
  34. 34.
    Watson, J. (2000). A passion for DNA: Genes, genomes, and society. Plainview, NY: Cold Spring Harbor Laboratory Press.Google Scholar
  35. 35.
    Munson, R., & Davis, L. H. (1992). Germ-line therapy and the medical imperative. Kennedy Institute of Ethics Journal, 2, 137–158.PubMedGoogle Scholar
  36. 36.
    Ho, A. (2007). Disability in the bioethics curriculum. Teaching Philosophy, 30, 403–420.Google Scholar
  37. 37.
    Silvers, A. (1998). Formal justice. In A. Slivers, D. Wasserman, & M. Mahowald (Eds.), Disability, difference, discrimination: Perspectives on justice in bioethics and public policy (pp. 13–145). Lanham, MD: Rowman & Littlefield.Google Scholar
  38. 38.
    Michie, S., & Marteau, T. (1996). Genetic counselling: Some issues of theory and practice. In T. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 104–122). Cambridge: Cambridge University Press.Google Scholar
  39. 39.
    Agree, S. (2007). Call for more fetal tests raises concerns: Ethicists fear it could lead to more abortions. National Post [newspaper on the Internet]. Retrieved September 7, 2007 from http://www.canada.com/topics/bodyandhealth/story.html?id=e948f0ab-043b-4b80-af92-c4380a155ada.
  40. 40.
    Press, N., & Browner, C. (1997). Why women say yes to prenatal testing. Social Science and Medicine, 45, 979–989.PubMedCrossRefGoogle Scholar
  41. 41.
    Kerr, A., Cunningham-Burley, S., & Anos, A. (1998). The new genetics and health: Mobilising lay expertise. Public Understanding of Science, 7, 41–60.PubMedCrossRefGoogle Scholar
  42. 42.
    Bennett, R. (2007). Routine antenatal HIV testing and informed consent: An unworkable marriage? Journal of Medical Ethics, 33, 446–448.PubMedCrossRefGoogle Scholar
  43. 43.
    Shakespeare, T. (1998). Choices and rights: Eugenics, genetics and disability equality. Disability & Society, 13, 665–681.CrossRefGoogle Scholar
  44. 44.
    Skotko, B. (2005). Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. American Journal of Obstetrics and Gynecology, 192, 670–677.PubMedCrossRefGoogle Scholar
  45. 45.
    Green, J. (1995). Obstetricians’ views on prenatal diagnosis and termination of pregnancy: 1980 compared with 1993. British Journal of Obstetrics and Gynaecology, 102, 228–232.PubMedGoogle Scholar
  46. 46.
    Marteau, T., Drake, H., & Borrow, M. (1994). Counselling following diagnosis of a fetal abnormality: The differing approaches of obstetricians, clinical geneticists, and genetic nurses. Journal of Medical Genetics, 31, 864–867.PubMedCrossRefGoogle Scholar
  47. 47.
    Mansfield, C., Hopfer, S., & Marteau, T. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenatal Diagnosis, 19, 808–812.PubMedCrossRefGoogle Scholar
  48. 48.
    Davis, D. (1997). Genetic dilemmas and the child’s right to an open future. The Hastings Center Report, 27, 7–15.PubMedCrossRefGoogle Scholar
  49. 49.
    Purdy, L. (1996). Genetics and reproductive risk: Can having children be immoral? In L. Purdy (Ed.), Reproducing persons: Issues in feminist bioethics (pp. 39–49). Ithaca: Cornell University Press.Google Scholar
  50. 50.
    Wertz, D., & Fletcher, J. (1993). A critique of some feminist challenges to prenatal diagnosis. Journal of Women’s Health, 2, 173–188.PubMedGoogle Scholar
  51. 51.
    Beresford, B. (1994). Positively parents: Caring for a severely disabled child. London: HMSO.Google Scholar
  52. 52.
    Battin, M. (1998). Euthanasia: The way we do it, the way they do it. End-of-life practices in the developed world. Journal of Pain Symptom Management, 6, 298–305.CrossRefGoogle Scholar
  53. 53.
    Brock, D. (1992). Voluntary active euthanasia. Hastings Center Report, 22, 10–22.PubMedCrossRefGoogle Scholar
  54. 54.
    Lachs, J. (1994). When abstract moralizing runs amok. Journal of Clinical Ethics, 5, 10–13.PubMedGoogle Scholar
  55. 55.
    Quill, T. (1991). Death and dignity: A case of individualized decision making. New England Journal of Medicine, 324, 691–694.PubMedGoogle Scholar
  56. 56.
    Rachels, J. (1975). Active and passive euthanasia. New England Journal of Medicine, 292, 78–80.PubMedGoogle Scholar
  57. 57.
    Michel, V. (1995). Suicide by persons with disabilities disguised as the refusal of life-sustaining treatment. HEC Forum, 7, 122–131.PubMedCrossRefGoogle Scholar
  58. 58.
    Silvers, A. (1998). Protecting the innocents from physician-assisted suicide: Disability discrimination and the duty to protect otherwise vulnerable groups. In M. Battin, R. Rhodes, & A. Silvers (Eds.), Physician assisted suicide: Expanding the debate (pp. 133–148). New York: Routledge.Google Scholar
  59. 59.
    McKay v. Bergstedt 801 P2d 617 (Nev. 1990).Google Scholar
  60. 60.
    Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. New York: Routledge.Google Scholar
  61. 61.
    Dworkin, R., Nagel, T., Nozick, R., Rawls, J., Scanlon, T., & Thomson, J. J. (1997). The philosophers’ brief. New York Review of Books, 27, 41–47.Google Scholar
  62. 62.
    Oshana, M. (1998). Personal autonomy and society. Journal of Social Philosophy, 29, 81–102.CrossRefGoogle Scholar
  63. 63.
    Benson, P. (1991). Autonomy and oppressive socialization. Social Theory and Practice, 17, 385–408.Google Scholar
  64. 64.
    Friedman, M. (1986). Autonomy and the split-level self. Southern Journal of Philosophy, 24, 19–35.CrossRefGoogle Scholar
  65. 65.
    Christman, J. (2004). Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies, 117, 143–164.CrossRefGoogle Scholar
  66. 66.
    Narayan, U. (1995). Colonialism and its others: Considerations on rights and care discourses. Hypatia, 10, 133–140.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2007

Authors and Affiliations

  1. 1.Department of PhilosophyUniversity of British ColumbiaVancouverCanada

Personalised recommendations