Queerin’ the PGD Clinic
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Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness.
KeywordsQueer theory Disability studies Bioethics Preimplantation genetic diagnosis (PGD) Human enhancement Sex
The research for this paper was supported under the Australian Research Council’s Future Fellowships funding scheme (project FT100100481). The views expressed herein are those of the author and are not necessarily those of the Australian Research Council.
1 Medical science has, of course, long had ambitions to shape future as well as contemporary bodies, most notoriously with its enthusiasm for eugenics programs that arose alongside the development of the science of genetics (Kevles 1985). However, only since the development of technologies of prenatal testing has it had the power to do so.
2 Whether “normal functioning” here should be understood as normal functioning for the individual being treated or “normal human functioning” is a further, controversial, question, with important implications for the logic of the debate about enhancement.
3 The exception to the general rule that individuals are not harmed by non-person-affecting decisions involves situations where a person is born into an existence so wretched that it is rational for them to prefer to be dead. In this case we may wish to say that they have been harmed by being brought into existence (Steinbock and McClamrock 1994; Strong 2005).
4 Both the original (Savulescu 2001) and the revised (Savulescu and Kahane 2009) statement of the principle of “procreative beneficence” also imply that parents are obligated to undertake PGD in order to allow such selection. For criticism of this claim see, de Melo-Martin 2004.
5 An important recent exception here is Elster (2011) who claims that the arguments Savulescu uses to support maximising our children’s welfare also argue in favour of an obligation to maximise social welfare.
6 For a useful introduction, see Griffin (1986) and Sumner (1996).
7 These claims are jarring because, of course, in sexist societies none of them are likely to be true. However, for reasons that will be provided below, parents’ reasoning about which embryo will have the best life prospects should arguably discount the impact of social injustice such as sexism.
8 At the risk of endorsing an ad hominem argument, I can’t help but feel that the hostility with which this argument has been received by advocates of human enhancement reflects, at least in part, the discomfort of this overwhelmingly male group of writers experiences at realising that they are by their own lights “suboptimal”.
9 This is not to deny that people are notoriously bad at evaluating the well-being of other individuals, for instance when they try to predict the impact of a disability on someone's well-being. My point is only that it is wildly implausible to insist that we can have no idea about what would improve or reduce the well-being of future individuals considered in the abstract.
10 At high latitudes, higher levels of melatonin (dark skin) increase the risk of vitamin D deficiency and its associated health impacts (Ponsonby, McMichael, and Van der Mei 2002; Yuen and Jablonski 2010).
11 Yet whether social justice would require that men could become pregnant (Sparrow 2008b) or would be capable of extending male life expectancy to that of women is unclear to say the least.
12 It arguably also requires an account of the normal trajectory of the ageing process, given that what might be therapy for someone in their 20s may be enhancement for someone in their 70s.
13 Importantly, PGD can only affect the rate at which individuals with particular conditions are born into a community. Diverse forms of embodiment as a result of trauma, disease, or elective surgery, will always continue to exist.
- Agar, N. 2004. Liberal eugenics: in defence of human enhancement. Oxford: Blackwell.Google Scholar
- Asch, A. 2000. “Why I haven’t changed my mind about prenatal diagnosis: reflections and refinements.” In Prenatal testing and disability rights, edited by E. Parens and A. Asch, 234–258. Washington, D.C.: Georgetown University Press.Google Scholar
- Bailey, R. 2005. Liberation biology: the scientific and moral case for the biotech revolution. Amherst, New York: Prometheus Books.Google Scholar
- Baily, M.A. 2000. “Why I had amniocentesis.” In Prenatal testing and disability rights, edited by E. Parens and A. Asch, 64–71. Washington, D.C.: Georgetown University Press.Google Scholar
- ———. 2011. Beyond humanity? The ethics of biomedical enhancement. Oxford: Oxford University PressGoogle Scholar
- Butler, J. 1993. Bodies that matter: on the discursive limits of “sex.” New York: Routledge.Google Scholar
- ———. 2004. Undoing gender. Boca Raton: Routledge, Taylor & Francis Group.Google Scholar
- Charlton, J.I. 1998. Nothing about us without us: disability oppression and empowerment. Berkeley: University of California Press.Google Scholar
- Davis, D.S. 2001. Genetic dilemmas: reproductive technology, parental choices, and children’s futures. New York, NY & London: Routledge. Google Scholar
- Davis, L.J. 1995. Enforcing normalcy: disability, deafness, and the body. London; New York: Verso.Google Scholar
- Dreger, A.D. 1998. Hermaphrodites and the medical invention of sex. Cambridge, Mass.: Harvard University Press.Google Scholar
- ———. ed. 1999. Intersex in the age of ethics. Hagerstown, Md.: University Publishing Group.Google Scholar
- Elliott, C. 2003. Better than well: American medicine meets the American dream. New York: W.W. Norton.Google Scholar
- Fausto-Sterling, A. 2000. Sexing the body: gender politics and the construction of sexuality. New York: Basic Books.Google Scholar
- Feinberg, J. 1980. “The child’s right to an open future.” In Whose child? children’s rights, parental authority, and state power, edited by W. Aiken and H. LaFollette, 124-153. Totowa, N.J.: Littlefield, Adams & Co.Google Scholar
- Fine, C. 2010. Delusions of gender: the real science behind sex differences. London: Icon.Google Scholar
- Foucault, M. 1994. The birth of the clinic: an archaeology of medical perception. New York: Vintage Books.Google Scholar
- Glover, J. 2006. Choosing children: genes, disability, and design. Oxford: Oxford University Press.Google Scholar
- Green, R.M. 2007. Babies by design: the ethics of genetic choice. New Haven and London: Yale University Press.Google Scholar
- Griffin, J. 1986. Well-being: its meaning, measurement, and moral importance. Oxford: Clarendon Press.Google Scholar
- Grosz, E.A. 1994. Volatile Bodies: toward a corporeal feminism. St. Leonards, N.S.W.: Allen & Unwin.Google Scholar
- Habermas, J. 2003. The future of human nature. Cambridge, England: Polity Press.Google Scholar
- ———. 1998. Clones, genes and immortality: ethics and the genetic revolution. Oxford: Oxford University Press.Google Scholar
- ———. 2007. Enhancing evolution: the ethical case for making better people. Princeton, NJ: Princeton University Press.Google Scholar
- Hughes, J.H. 2004a. Citizen cyborg: why democratic societies must respond to the redesigned human of the future. Cambridge, MA : Westview Press.Google Scholar
- -----. 2004b. “Battle plan to be more than well: Transhumanism is finally getting in gear.” Trans humanity: Archive of the Content of the World Transhumanist Association website, 1998–2009. Accessed October 9, 2012. http://transhumanism.org/index.php/th/more/509/.
- Hurst, R. 2006. “The perfect crime.” In: Better humans? The politics of human enhancement and life extension, edited by P. Miller and J. Wilsdon, 114–121. London: Demos.Google Scholar
- Huxley, A. 1991. Brave new world. Harlow: Longman.Google Scholar
- Kessler, S.J. 1998. Lessons from the intersexed. New Brunswick, New Jersey, and London: Rutgers University Press.Google Scholar
- Kevles, D.J. 1985. In the name of eugenics: genetics and the uses of human hereditary. New York: Alfred A. Knopf.Google Scholar
- Kittay, E.F. 2006. “Thoughts on the desire for normality.” In Surgically shaping children: essays on technology, and the pursuit of normality, edited by E. Parens, 90–110. Baltimore, Md.: Johns Hopkins University Press.Google Scholar
- Kitcher, P. 1996. The lives to come: the genetic revolution and human possibilities. New York: Simon and Schuster.Google Scholar
- Laqueur, T. 1990. Making sex: body and gender from the Greeks to Freud. Cambridge, Mass.: Harvard University Press.Google Scholar
- McRuer, R. 2010 “Compulsory Able-bodiedness and Queer/Disabled Existence.” In The Disability Studies Reader, 3rd ed., edited by L. J. Davis, 383–392. New York and London: Routledge.Google Scholar
- Mills, C. 2003. “The child’s right to an open future?” Journal of Social Philosophy 34 (4): 499–509.Google Scholar
- Oliver, M. 2009. Understanding disability: from theory to practice, 2nd ed. Basingstoke England; New York: Palgrave Macmillan.Google Scholar
- Parens, E., ed. 2006. Surgically shaping children: essays on technology, and the pursuit of normality. Baltimore, Md.: Johns Hopkins University Press. Google Scholar
- ———. eds. 2000. Prenatal testing and disability rights. Washington, D.C.: Georgetown University Press.Google Scholar
- Parfit, D. 1984. Reasons and persons. Oxford: Clarendon Press.Google Scholar
- Ponsonby, A-L., A. McMichael, and I. van der Mei. 2002. “Ultraviolet radiation and autoimmune disease: insights from epidemiological research.” Toxicology 181–182 [27 December]: 71–78.Google Scholar
- President's Council on Bioethics. 2003. Beyond Therapy: biotechnology and the pursuit of happiness. New York: Regan Books.Google Scholar
- Press, N. 2000. “Assessing the expressive character of prenatal testing: the choices made or the choices made available?” In Prenatal testing and disability rights, edited by E. Parens and A. Asch, 214–233. Washington, D.C.: Georgetown University Press.Google Scholar
- Rose, N.S. 2007. The politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ Princeton University Press.Google Scholar
- Salamon, G. 2010. Assuming a body: transgender and rhetorics of materiality. New York: Columbia University Press.Google Scholar
- ———. 2006. “Genetic interventions and the ethics of enhancement of human beings.” In The Oxford handbook on bioethics, edited by B. Steinbock, 516–35. Oxford: Oxford University Press. Google Scholar
- ———. 2008. “Procreative beneficence: reasons not to have disabled children.” In The Sorting Society, edited by L. Skene and J. Thomson, 51–68. Cambridge, New York: Cambridge University Press.Google Scholar
- Savulescu, J., and N. Bostrom, eds. 2009. Human enhancement. Oxford: Oxford University Press.Google Scholar
- Savulescu, J., R. ter Meulen, and G. Kahane, eds. 2011. Enhancing human capacities. Oxford: Wiley-Blackwell.Google Scholar
- Savulescu, J., A. Sandberg, and G. Kahane. 2011. “Well-being and enhancement.” In Enhancing Human Capacities, edited by J. Savulescu, R. ter Meulen, and G. Kahane, 3–18. Oxford Wiley-Blackwell.Google Scholar
- Saxton, M. 1997. “Disability rights and selective abortion.” In Abortion Wars: a half century of struggle, edited by Rickie Solinger, 374–393. Berkeley and Los Angeles: University of California Press.Google Scholar
- Scully, J.L. 2008. Disability bioethics: moral bodies, moral difference. Lanham: Rowman & Littlefield Publishers.Google Scholar
- Shakespeare, T. 2006. Disability rights and wrongs. New York: Routledge.Google Scholar
- Silver, L.M. 1999. Remaking Eden: cloning, genetic engineering and the future of human kind. London: Pheonix.Google Scholar
- Skene, L., and J. Thompson, eds. 2008. The sorting society: the ethics of genetic screening and therapy. Cambridge: Cambridge University Press.Google Scholar
- Sparrow, R. 2007. “Procreative beneficence, obligation, and eugenics.” Genomics, Society, and Policy 3 (3): 43–59.Google Scholar
- ———. 2008a. “Genes, identity, and the expressivist critique.” In The Sorting Society, edited by L. Skene and J. Thomson, 111–132. Cambridge, New York: Cambridge University Press.Google Scholar
- ———. 2011a. “Human enhancement and sexual dimorphism.” Bioethics 25: Online first. DOI: 10.1111/j.1467-8519.2011.01884.x.
- ———. 2011d. “A not-so-new eugenics: Harris and Savulescu on human enhancement.” Hastings Center Report 41 (1): 32–42. Google Scholar
- ———. Forthcoming. “Ethics, eugenics, and politics.” In Toward Bioethics in 2050 – international dialogues, edited by A. Akayabashi.Google Scholar
- Steinbock, B., and R. McClamrock. 1994. “When is birth unfair to the child?” Hastings Center Report 24: 15–21.Google Scholar
- Stock, G. 2003. Redesigning humans: choosing our children’s genes. London Profile Books.Google Scholar
- Sullivan, N., and S. Murray, eds. 2009. Somatechnics: queering the technologisation of bodies. Farnham, England; Burlington, VT: Ashgate.Google Scholar
- Sumner, L.W. 1996. Welfare, happiness, and ethics. Oxford University Press: New York. Google Scholar
- Warner, M. 1999. The trouble with normal: sex, politics, and the ethics of queer life. New York: Free Press.Google Scholar
- Wendell, S. 1996. The rejected body. New York: Routledge.Google Scholar
- Wilkerson, A.L. 1998. Diagnosis: difference; the moral authority of medicine. Ithaca: Cornell University.Google Scholar
- World Health Organisation. 2009. World health statistics 2009. Geneva: World Health Organisation.Google Scholar