Right problem, wrong solution: A pro-choice response to "expressivist" concerns about preimplantation genetic diagnosis

Cambridge Quarterly of Healthcare Ethics

Volumn 16, Issue 1, 2007, Pages 20-34

  Gavaghan, Colin ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

DECISION MAKING; DISABLED PERSON; ETHICS; FEMALE; FERTILIZATION IN VITRO; HUMAN; INDUCED ABORTION; MALE; METHODOLOGY; PRENATAL DIAGNOSIS; PSYCHOLOGICAL ASPECT; REVIEW;

ABORTION, INDUCED; DECISION MAKING; DISABLED PERSONS; FEMALE; FERTILIZATION IN VITRO; HUMANS; MALE; PREIMPLANTATION DIAGNOSIS; PRENATAL DIAGNOSIS;

EID: 33947416587     PISSN: 09631801     EISSN: 14692147     Source Type: Journal    
DOI: 10.1017/S096318010707003X     Document Type: Review

References (69)

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4. See, for example, Edwards SD. Disability, identity and the "expressivist objection." Journal of Medical Ethics 2004;30:418-20;
5. Scott R. Prenatal testing, reproductive autonomy, and disability interests. Cambridge Quarterly of Healthcare Ethics 2005;14(1):65-82.
6. Conservative commentator Francis Fukuyama, who has recently turned his attention to biotechnology, has written of "a desperate need for philosophy to return to the pre-Kantian tradition that grounds rights and morality in nature." Our Posthuman Future: Consequences of the Biotechnology Revolution. New York: Faber, Strauss and Giroux; 2002:112.
7. Another eminent "biocon," Leon Kass, has regularly argued along the lines that "[s]eeking to escape entirely from nature (in order to satisfy a natural desire or a natural right to reproduce!) is self-contradictory in theory and self-alienating in practice." The wisdom of repugnance: Why we should ban the cloning of human beings. New Republic 1997;216(22):17-26. Available at http:// www.pbs.org/wgbh/pages/frontline/shows/ fertility/readings/cloning.html.
8. See note 5, Fukuyama 2002:91.
9. Such fears often fail to consider that, for the children born as a result of PGD, the alternative was not a more "normal" conception, but rather, nonexistence. This argument found its most famous expression in Derek Parfit's hypothetical case of the 14-year-old girl; Reasons and Persons. Oxford: Clarendon Press; 1984:357-61.
10. See also, inter alia, Roberts MA. Present duties and future persons: When are existence-inducing acts wrong? Law and Philosophy 1995;14(3/4): 297-327;
11. Gavaghan C. Deregulating the genetic supermarket: Preimplantation screening, future people, and the harm principle. Cambridge Quarterly of Healthcare Ethics 2000;9(2):242-61.
12. Joint Working Group of the HFEA and Human Genetics Commission. Outcome of the Public Consultation on Preimplantation Genetic Diagnosis. Nov 2001:12. Available at http://www.hgc. gov.uk/UploadDocs/DocPub/Document/ pgdoutcome.pdf.
13. See note 8, Joint Working Group 2001:11.
14. Rosamund Scott draws a similar division between disability-oriented arguments; see note 4, Scott 2005.
15. Shakespeare T. Back to the future? New genetics and disabled people. Critical Social Policy 1995;15(2/3):22-35, at 31.
16. Susan Wendell has expressed a similar concern in The Rejected Body: Feminist Philosophical Reflections on Disability. London: Routledge; 1996:54.
17. Buchanan A. Choosing who will be disabled: Genetic intervention and the morality of inclusion. Social Philosophy & Policy 1996;13(1):18-46, at 21.
18. Laura M. Purdy also writes of the notion that "acting so as to avoid such births will lead us to reduce the social resources now allocated to the disabled." Loving future people. In: Callahan JC, ed. Reproduction, Ethics and the Law: Feminist Perspectives. Bloomington: Indiana University Press; 1995:312.
19. See also Kitcher P. The Lives To Come. London: Allen Lane, The Penguin Press; 1996:200.
20. Philip Kitcher offers just such an example, of beta thalassemia in Cyprus: "As the incidence of thalassemia has diminished, help for the afflicted has increased: Because there is now less demand for blood transfusions and other treatments, the lives of thalassemia sufferers are now better than they were."
21. See note 12, Kitcher 1996:85.
22. Hughes J. Citizen Cyborg: Why Democratic Societies Must Respond to the Redesigned Human of the Future. Oxford: Westview Press; 2004:144.
23. Buchanan A, Brock DW, Daniels N, Wickler D. From Chance to Choice: Genetics and Justice. Cambridge, U.K.: Cambridge University Press; 2000:266-9.
24. Buchanan et al. point to the example of so-called "orphan" drugs, that is, treatments for conditions so rare that it is not economically viable for pharmaceutical companies to develop or manufacture them.
25. See note 15, Buchanan et al. 2000:268.
26. Saxton M. Disability rights and selective abortion. In: Solinger R, ed. Abortion Wars: A Half Century of Struggle. Berkeley: University of California Press; 1998:374-93, at 391.
27. Saxton M. Born and unborn: The implications of reproductive technologies for people with disabilities. In: Arditti R, Klein RD, Minden S, eds. Test-Tube Women: What Future for Motherhood? Pandora Press; 1984:301.
28. Kent D. Somewhere a Mockingbird. In: Parens E, Asch A, eds. Prenatal Testing and Disability Rights. Washington, DC: Georgetown University Press; 2000:62.
29. Even more troubling examples exist of choice-denying or even coercive circumstances that gave rise to great lives. The parents of the great abolitionist, Frederick Douglass, were a slave mother and a slave-owning father who may very possibly have raped her. It is surely possible to celebrate Douglass's life while at the same time celebrating that the circumstances that led to his birth will never be repeated.
30. Degener T. Female self-determination between feminist claims and "voluntary" eugenics, between "rights" and ethics. Issues in Reproductive and Genetic Engineering 1990;3(2):87-99, at 92-3.
31. Parens E, Asch A. The disability rights critique of prenatal testing: Reflections and recommendations. In: Parens E, Asch A. eds. Prenatal Testing and Disability Rights. Washington, DC: Georgetown University Press; 2000:15.
32. See note 7, Parfit 1984:357-61.
33. Precisely this point is made by James Lindemann Nelson: Prenatal diagnosis, personal identity, and disability. Kennedy Institute of Ethics Journal 2000;10:213-28, at 216.
34. Perhaps the danger of conveying such a negative message to disabled people is more acute in view of the extent to which disabled people have already been devalued, discriminated against, and excluded from many aspects of society. It has also been argued (by, among others, a reviewer of this article) that these hardships have led to a shared sense of identity among disabled people, and that it is this identification with other disabled people that renders the expressivist message so hurtful. It would be unsurprising if the history of disabled people has given rise to certain distinct fears and concerns, but nonetheless, Nelson's analogy may not be entirely inaccurate. That poor people have, historically and currently, been excluded from many aspects of society - work places, social clubs, academia, legislature, and judiciary - can be demonstrated by reference to any number of sources (see, for example, Marshall G, Swift A, Roberts S. Against the Odds? Social Class and Social Justice in Industrial Societies. Oxford: Clarendon Press; 1997). Furthermore, that a sense of shared identity has grown up among poor people is, arguably, at least as true as the analogous claim regarding disabled people. That is, such a shared identity does exist, up to a point, and political movements have been built on the basis of the common obstacles they face (including the U.K. Labour Party), but it is by no means true that all people from economically deprived backgrounds, or with disabilities, regard those factors as being integral to their identities, nor that they feel a sense of community or identity with other poor/disabled people.
35. Reinders H. The Future of the Disabled in Liberal Society: An Ethical Analysis. Notre Dame, Ind.: University of Notre Dame Press; 2000:93.
36. See note 12, Buchanan 1996:32.
37. A similar point is made by Bonnie Steinbock: Disability, prenatal testing, and selective abortion. In: Parens E, Asch A. eds. Prenatal Testing and Disability Right. Washington, DC: Georgetown University Press; 2000:119.
38. A point of view expressed by Mary Ann Baily, who candidly admits her own unease at the prospect of any future child she bore being co-opted into a "disability culture" from which she herself was excluded; Why I had amniocentisis. In: Parens E, Asch A. eds. Prenatal Testing and Disability Right. Washington, DC: Georgetown University Press; 2000:68-9.
39. Spriggs M. Lesbian couple create a child who is deaf like them. Journal of Medical Ethics, Online eCurrent Controversies, May 2, 2002. Available at http://jme.bmjjournals.com/cgi/reprint/28/ 5/283.pdf#search= %22%221esbian%20couple%20create%20a%20child%22%22.
40. See note 24, Nelson 2000:215-6.
41. See also note 22, Parens, Asch 2000:15.
42. See note 21, Degener 1990:95.
43. See note 11, Wendell 1996:153.
44. See note 26, Reinders 2000:4.
45. Albert B. The new genetics and disability rights. Presentation to EU Conference "Human Genetic Testing, What Implications", Brussels, May 6, 2004. Available at: http://www.dpi.org/en/resources/topics/documents/ bioethics-english.pdf.
46. See also Disabled people speak on the new genetics. DPI Europe Position Statement on Bioethics and Human Rights. Available at: http://www.dpieurope.org/ htm/bioethics/dpsngfullreport.htm; Purdy LM. Loving future people. In: Callahan JC, ed. Reproduction, Ethics and the Law: Feminist Perspectives. Bloomington: Indiana University Press; 1995:312;
47. Stacey M. The new genetics: A feminist view. In: Marteau, Richards, eds. The Troubled Helix. Cambridge, U.K.: Cambridge University Press, 1996, at 343.
48. See note 26, Reinders 2000:55.
49. See note 26, Reinders 2000:55.
50. See note 26, Reinders 2000:56.
51. Edwards SD. Disability, identity and the "expressivist" objection. Journal of Medical Ethics 2004;30:418-20.
52. An intriguing discussion of Alzheimer's disease and continuity of identity has centered around the issue of advance directives. See, in particular, Dresser R. Advance directives, self-determination, and personal identity. In: Hacker C, Moseley R, Vawter DE, eds. Advance Directives in Medicine. New York: Praeger Publishers; 1989;
53. Dresser R (with PJ Whitehouse). The incompetent patient on the slippery slope. Hastings Center Report 1994;24(4):6-12.
54. See also Kuczewski M. Whose will is it, anyway? A discussion of advance directives, personal identity, and consensus in medical ethics. Bioethics 1994;8(1):27-48;
55. Kuhse H. Some reflections on the problem of advance directives, personhood and personal identity. Kennedy Institute of Ethics Journal 1999;9(4):347-64.
56. See note 24, Nelson 2000:219.
57. See also Walter Glannon's example of potentially identity-affecting gene therapy: Genes and Future People: Philosophical Issues in Human Genetics. Oxford: Westview Press; 2001:81-2.
58. Following the logic of the Non-Identity Principle, and assuming that Dresser et al. are correct about the discontinuity of identity between those with and those without Alzheimer's, a somewhat more alarming prospect arises: that, in attempting to cure Alzheimer's, at least for those in the latter stages of the disease, we would in truth be seeking to replace one-existing-individual with a different, presently merely hypothetical one. If the discontinuity thesis is taken to its logical conclusion, would this amount to "killing" one human being in order that another might come into existence?
59. Dobson R. "Saviour sibling" is born after embryo selection in the United States. British Medical Journal 2003;326:1416.
60. "Because sex selection is banned in Britain, the couple paid an Italian clinic £30,000 for three attempts to conceive a girl but none was successful." Couple abandon battle for baby of their choice. The Sunday Times, Jan 23, 2005.
61. Approximately 69% of respondents to the HGC/HFEA Public Consultation on PGD agreed that PGD should be available only where there is a known family history of serious genetic disorder or to cases of aneuploidy. See note 8, Joint Working Group 2001:para. 16.
62. See note 22, Parens, Asch 2000:30-1.
63. See note 8, Joint Working Group 2001 Recommendation 11.
64. See note 26, Reinders 2000:64.
65. See Gavaghan C. "Designer donors"? Tissue-typing and the regulation of pre-implantation genetic diagnosis. [2004] 3 Web JCLI, at http://216.239.59.1.04/search?q=cache:6kase5MXEbsJ: webjcli.ncl.ac.uk/2004;
66. Use of preimplantation diagnosis to produce tissue donors: An irreconcilable dichotomy? Human Fertility 2003;6:23-5.
67. Clarke A. Response to: "What counts as success in genetic counselling?" Journal of Medical Ethics 1993;19:47-9, at 48.
68. See also Botkin J. "As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be." Fetal privacy and confidentiality. Hastings Center Report 1995;25(5):32-9, at 32.
69. It could be suggested that any ostensibly value-free approach would in reality be undermined by the fact that the overwhelming majority of PGD users would, in fact, use it to screen out "disabilities" and not more "frivolous" traits, still less to use it to screen for disability. My suggestion is that this need not undermine a genuine claim of state neutrality, any more than the constitutional commitments of the French and U.S. states to neutrality on the question of religion are undermined by the fact that, in practice, a substantial majority of their citizens use, and have always used, that freedom to practice as Christians.