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Futures of Reproduction pp 57–83Cite as

The Limits of Reproductive Autonomy: Prenatal Testing, Harm and Disability

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Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 49))

Abstract

I argued in the previous chapter that Foucault's account of the self-formative practice of ethics allows for a rich account of reproductive autonomy. His view of freedom as a practice of self-formation highlights the positive process of making oneself up in relation to norms and rules, and helps to bring out the significance that reproduction may have in human lives. It also highlights the way that the limits of reproductive autonomy are tested and established in practice. In this and the following chapters, I want to consider in more detail the ways that reproductive and genetic technologies problematise the limits of reproductive liberty, and in doing so, contribute to the constitution of the social world in which we must all live.

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Notes

  1. 1.

    Nelson, James Lindemann. 1998. The meaning of the act: Reflections on the expressivist force of reproductive decision making and policy. Kennedy Institute of Ethics Journal 8(2):165.

  2. 2.

    See for instance, reportage of the story on BBC News Online: Anon. Couple ‘choose’ to have deaf baby. BBC News Online. Available at http://news.bbc.co.uk/2/hi/health/1916462.stm. For a more extensive coverage, see Mundy, Liza. 2002. A world of their own. The Washington Post Weekly Magazine, March 31.

  3. 3.

    See Scully, Jackie Leach. 2008. Disability bioethics: Moral bodies, moral difference. Lanham, MD: Rowman and Littlefield, 61.

  4. 4.

    Mill, John Stuart. 1989. On liberty and other writings. Cambridge: Cambridge University Press, 13.

  5. 5.

    Feinberg, Joel. 1987. Harm to others. Oxford: Oxford University Press.

  6. 6.

    Ibid., 34.

  7. 7.

    Ibid.

  8. 8.

    Ibid., 36.

  9. 9.

    Harris, John. 1998. Clones, genes and immortality: Ethics and the genetic revolution. Oxford: Oxford University Press, 106.

  10. 10.

    The thought experiment Harris uses to establish this point is that of selective termination in cases of multiple pregnancy (foetal reduction), in which the healthy embryos are aborted and the disabled retained. See Harris, Clones, genes and immortality, 107–108.

  11. 11.

    Harris, Clones, genes and immortality, 109–110; Also see Harris, John. 1992. Wonderwoman and superman: The ethics of biotechnology, Oxford: Oxford University Press, 88.

  12. 12.

    See Harris, John. 2007. Enhancing evolution: The ethical case for making better people. Princeton and Oxford: Princeton University Press, 91–92.

  13. 13.

    Glover, Jonathan. 2006. Choosing children: Genes, disability, and design. Oxford: Oxford University Press, 13, 25.

  14. 14.

    Harris. Wonderwoman and superman, 153.

  15. 15.

    Indeed, a Schopenhauerian might conclude that it is best to cease reproducing altogether.

  16. 16.

    Parfit, Derek. 1984. Reasons and persons. Oxford: Clarendon Press, 351–379.

  17. 17.

    But see especially Archard, David. 2004. Wrongful life. Philosophy 79; Feinberg, Joel. 1986. Wrongful life and the counterfactual element in harming. Social Philosophy and Policy 4(1):145–178; Steinbock, Bonnie. 1986. The logical case for ‘wrongful life’. Hastings Center Report 16(2):15–20.

  18. 18.

    Harris, Enhancing evolution, 74.

  19. 19.

    Contrary to Neil Levy (Levy, Neil. 2002. Deafness, culture and choice. Journal of Medical Ethics 28(5):284–285) deafness may well be a necessary condition for belonging to the Deaf community. See Preston, Paul M. 1994. Mother father deaf: Living between sound and silence. Cambridge, MA: Harvard University Press.

  20. 20.

    Savulescu, Julian. 2002. Deaf lesbians, ‘designer disability’, and the future of medicine. British Medical Journal 325:771.

  21. 21.

    Ibid., 772.

  22. 22.

    Ibid.

  23. 23.

    Ibid.

  24. 24.

    Savulescu, Julian, 2008. Procreative beneficence: Reasons not to have disabled children. In The sorting society: The ethics of genetic screening and therapy, eds. Loane Skene, and Janna Thompson, 51, 54. Cambridge: Cambridge University Press.

  25. 25.

    Savulescu, Julian. 2001. Procreative beneficence: Why we should select the best children. Bioethics 15(5/6): 415.

  26. 26.

    This, he argues, is true on a hedonic or a desire-satisfaction account of wellbeing, as well as an objective list theory. Note that Savulescu is not committed to saying that the more intelligent individual will have a better life – simply that it is rational to expect that they would.

  27. 27.

    For a more extensive critique of Savulescu’s conception of obligation, see Sparrow, Robert. 2007. Procreative beneficence, obligation and eugenics. Genomics, Society and Policy 3(3):43–59.

  28. 28.

    Savulescu. Procreative beneficence: why we should select the best children, 425.

  29. 29.

    Savulescu, Julian and Guy Kahane. 2009. The moral obligation to create children with the best chance of the best life. Bioethics 23(5):279.

  30. 30.

    Ibid., 278.

  31. 31.

    Ibid., 279.

  32. 32.

    See Davis, Lennard J. 1995. Enforcing normalcy: Disability, deafness and the body. London: Verso, xvii–xviii, for a discussion of this ‘biculturalism’. In this regard, it might be argued that the approaches I have discussed fail to take seriously the demands of cultural and value pluralism in relation to Deaf culture. On this issue, see Sparrow, Robert. 2005. Defending deaf culture: The case of cochlear implants. The Journal of Political Philosophy 13(2):135–152.

  33. 33.

    Savulescu. Procreative beneficence: reasons not to have disabled children, 55. There is a kind of conceptual fiat at work here, wherein disability is by definition bad, since the prefix ‘dis’ expresses a negativity in relation to ‘ability’. All that remains, then, is to show that a particular condition can be legitimately called a ‘disability’ for it to be negatively judged.

  34. 34.

    Ibid.

  35. 35.

    Bennett, Rebecca. 2009. The fallacy of the principle of procreative beneficence. Bioethics 23(5):265–273.

  36. 36.

    Savulescu. Procreative beneficence: why we should select the best children, 418.

  37. 37.

    Bennett. The fallacy of the principle of procreative beneficence, 270.

  38. 38.

    Glover. Choosing children, 9.

  39. 39.

    Ibid., 14.

  40. 40.

    Ibid., 23.

  41. 41.

    Ibid., 89.

  42. 42.

    Ibid., 91–93.

  43. 43.

    Ibid., 9.

  44. 44.

    Nussbaum, Martha. 2006. Frontiers of justice: Disability, nationality, species membership. Cambridge: Harvard University Press, 70.

  45. 45.

    Ibid.

  46. 46.

    Ibid., 76.

  47. 47.

    Glover. Choosing children, 58.

  48. 48.

    My point here goes to the semiotics of a text, which may or may not be intentional and only tenuously attach to the author. It is worth considering the way that the muscle-bound male body stands as the synecdoche of enhancement in these texts. This seems some distance from the social synecdoche involved in disability discrimination, whereby a disability stands in for the whole person, noted by Asch and others, which I discuss in the following section. See Harris, Enhancing evolution; Savulescu, Julian, and Nick Bostrom, eds. 2009. Human enhancement. Oxford: Oxford University Press.

  49. 49.

    On forms of problematisation, see Foucault, Michel. 1987. The use of pleasure: The history of sexuality. Vol. 2 (trans: Hurley, Robert). London: Penguin, esp. 23–24. Also see my discussion in the previous chapter of the problematisation of reproduction.

  50. 50.

    Asch, Adrienne. 1988. Reproductive technology and disability. In Reproductive laws for the 1990s, eds. Sherrill Cohen, and Nadine Taub, 70. Clifton, NJ: Humana Press.

  51. 51.

    For a more extensive discussion of the strands of the disability rights critique of prenatal testing, see Parens, Erik, and Adrienne, Asch. 1999. Special supplement: The disability rights critique of prenatal testing reflections and recommendations. The Hastings Center Report 29(5):S1–S22.

  52. 52.

    Ibid., S2.

  53. 53.

    Wendell, Sue. 1996. The rejected body. New York, NY: Routledge, 153.

  54. 54.

    Nelson, James Lindemann. 2000. Prenatal diagnosis, personal identity and disability. Kennedy Institute of Ethics Journal 10(3):213.

  55. 55.

    Ibid., 226.

  56. 56.

    Buchanan, Allen. 1996. Choosing who will be disabled: Genetic intervention and the morality of inclusion. Social Philosophy and Policy 13:30.

  57. 57.

    Nelson. Prenatal diagnosis, personal identity and disability, 216; Nelson. Meaning of the act, 175–176.

  58. 58.

    Nelson. Prenatal diagnosis, personal identity and disability, 217.

  59. 59.

    On the idea of the ‘trace’, see Derrida, Jacques. 1997. Of grammatology (trans: Spivak, Gayatri Chakravorty). Baltimore: Johns Hopkins University Press. I use the term in a less technical sense here.

  60. 60.

    Nelson. Meaning of the act, 169.

  61. 61.

    Asch, Adrienne. 2000. Why I haven’t changed my mind about prenatal diagnosis: Reflections and refinements. In Prenatal diagnosis and disability rights, eds. Erik Parens, and Adrienne Asch, 237. Washington, DC: Georgetown University Press.

  62. 62.

    Asch. Why I haven’t changed my mind about prenatal diagnosis, 237; Press, Nancy. 2000. Assessing the expressive character of prenatal testing: The choices made or the choices made available? In Prenatal diagnosis and disability rights, eds. Erik Parens, and Adrienne Asch, 215. Washington, DC: Georgetown University Press.

  63. 63.

    Nelson. Prenatal diagnosis, personal identity and disability, 219.

  64. 64.

    There are of course various philosophical models of embodiment available, and I am not going to make a strong case for adopting any particular one of those here. Rather, I want merely to point toward the role of embodiment in the experience of disability, and indicate the importance of taking this into account in reproductive ethics.

  65. 65.

    Tremain, Shelley. 2001. On the government of disability. Social Theory and Practice 27:632.

  66. 66.

    Ibid.

  67. 67.

    This is despite the fact that Merleau-Ponty himself had little to say about corporeal variability (beyond the use of pathological cases to illustrate normality) and has been substantially criticised by feminist and disability theorists for his reliance upon the male body as his normative model. See in particular Scully. Disability bioethics, 83–105; Diprose, Rosalyn. 1994. The bodies of women: Ethics, embodiment and sexual difference. New York and London: Routledge, 102–130; Grosz, Elizabeth. 1994. Volatile bodies: Toward a corporeal feminism. St Leonards: Allen and Unwin, 107–111; Young, Iris Marion. 2005. Pregnant embodiment: Subjectivity and alienation. In On female body experience. Oxford: Oxford University Press.

  68. 68.

    Leder, Drew. 1990. The absent body. Chicago, IL: University of Chicago Press, 83–97.

  69. 69.

    Paterson, Kevin, and Bill, Hughes. 1999. Disability studies and phenomenology: The carnal politics of everyday life. Disability and Society 14(5):603.

  70. 70.

    See, for instance, Bourdieu, Pierre. 1991. Language and symbolic power, ed. John B. Thompson (trans: Raymond, Gino, and Adamson, Matthew). Cambridge: Polity Press.

  71. 71.

    Scully. Disability bioethics, 12.

  72. 72.

    Ibid., 154, 173.

  73. 73.

    Nelson. Meaning of the act, 173.

  74. 74.

    Nelson. Prenatal diagnosis, personal identity and disability, 220.

  75. 75.

    Indeed, the scientific language of ‘the foetus’ itself abstracts from that relationship and may seem quite inapt for a woman as her pregnancy progresses.

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  1. Centre for Values, Ethics and Law in Medicine and Unit for History and Philosophy of Science, University of Sydney, Camperdown, New South Wales, 2006, Australia

    Catherine Mills

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Mills, C. (2011). The Limits of Reproductive Autonomy: Prenatal Testing, Harm and Disability. In: Futures of Reproduction. International Library of Ethics, Law, and the New Medicine, vol 49. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-1427-4_4

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