Deregulating the genetic supermarket: Preimplantation screening, future people, and the harm principle

Cambridge Quarterly of Healthcare Ethics

Volumn 9, Issue 2, 2000, Pages 242-260

  Gavaghan, Colin ^a  

^a NONE

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EID: 0034148186     PISSN: 09631801     EISSN: None     Source Type: Journal    
DOI: 10.1017/s0963180100902111     Document Type: Review

References (100)

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2. 2. See note 1, Nozick 1986;315n.
3. 3. See note 1, Nozick 1986:315n.
4. 4. Although somatic gene therapy has been performed with some measure of success in a few cases; see Holtug N. Altering humans: the case for and against human gene therapy. Cambridge Quarterly of Healthcare Ethics 1997;6:157-74.
5. 5. Delhanty, Wells, Harper. Genetic diagnosis before implantation. British Medical Journal 1997;315:828.
6. 6. See note 5, Delhanty, Wells, Harper 1997.
7. 7. Together with Hammersmith, the licensed assisted conception units are, respectively, St. Thomas' Hospital, Leeds General Infirmary, and University College Hospital. See Human Fertilisation & Embryology Authority. The Patients' Guide to DI and IVF Clinics, 3rd ed. London: Human Fertilisation & Embryology Authority, 1997.
8. 8. See note 5, Delhanty, Wells, Harper 1997. See also Hanson C, Hamberger L. Clinical aspects of the use of preimplantation genetic diagnosis in couples at risk, Acta Obstet Gynecol Scand 1997; 76 (Supplement 164):19-21, 19.
9. 8. See note 5, Delhanty, Wells, Harper 1997. See also Hanson C, Hamberger L. Clinical aspects of the use of preimplantation genetic diagnosis in couples at risk, Acta Obstet Gynecol Scand 1997; 76 (Supplement 164):19-21, 19.
10. 9. Kaufmann RA, et al. Preimplantation genetic analysis. Journal of Reproductive Medicine 1992; 37(5):428-36, 428.
11. 10. For a straightforward account of how PCR works, see Kitcher P. The Lives to Come. Hammondsworth: Penguin Press, 1996:160.
12. 11. See note 10, Kitcher 1996:160.
13. 12. See note 8, Hanson, Hamberger 1997.
14. 13. Of course, the ability to implant only embryos of the desired sex could be utilized for "nontherapeutic" purposes. This possibility is highly controversial, and has been the subject of a report by the Human Fertilisation & Embryology Authority, who decided that sex selection should be permitted only for the avoidance of the transmission of X-linked disorders. Although this decision is by no means uncontentious, the issue of nontherapeutic sex selection will not be considered in detail here.
15. 14. Ao A. Preimplantation genetic diagnosis of inherited disease. Indian Journal of Experimental Biology 1996; 34:1177-82; and note 8, Hanson, Hamberger 1997.
16. 14. Ao A. Preimplantation genetic diagnosis of inherited disease. Indian Journal of Experimental Biology 1996; 34:1177-82; and note 8, Hanson, Hamberger 1997.
17. 15. Liu J, et al. Cystic fibrosis, Duchenne muscular dystrophy and preimplantation genetic diagnosis. Human Reproduction Update 1996; 2(6)531-9.
18. 16. Goodin RE. Utility and the good. In: Singer P, ed. A Companion to Ethics. Oxford: Blackwell, 1991:245.
19. 17. Mill JS. On liberty. In: Warnock M, ed. John Stuart Mill: Utilitarianism. Glasgow: Collins, 1979:206.
20. 18. See, for example, Beauchamp T, Childress JS. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press, 1994.
21. 19. See note 1, Nozick 1986.
22. 20. Dworkin G. Paternalism: some second thoughts. In: Feinberg J, Gross, eds. Philosophy of Law. Belmont, Calif.: Wadsworth, 1995.
23. 21. See note 18, Beauchamp, Childress 1994:121.
24. 22. It is of course conceivable that a restriction on an individual's liberty will be compensated for by an increase in the other necessary criterion for autonomy, the capacity for intentional acting, thereby effectively increasing his aggregate degree of autonomy. Although this state of affairs could occasionally be argued to arise - with the compulsory education of school-aged children, perhaps - it is submitted that it will rarely be the case that restrictions on reproductive liberty could be defended in this way. In any event, the onus would surely lie with the advocates of restriction of liberty to demonstrate that, overall, autonomy had been enhanced.
25. 23. Feinberg J. Harm to Others. Oxford: Oxford University Press, 1994:11.
26. 24. See note 23, Feinberg 1994:9.
27. 25. It is recognized that this may be seen as something of an oversimplification. Several writers on abortion have attempted to construct an approach that could be categorized as neither traditionally "pro-life" nor "pro-choice"; see, for example, McLean S. Abortion law: is consensual reform possible? Journal of Law and Society 1990;17(1):106, and McCormick RA. Abortion: the unexplored middle ground. In: Monagle JF, Thomasma DC, eds. Health Care Ethics: Critical Issues. Aspen, 1994. Nonetheless, the fact remains that since virtually no one believes that abortion should be rendered compulsory, those who advocate further curbs on liberty in this area are advocating making abortion more difficult to obtain.
28. 25. It is recognized that this may be seen as something of an oversimplification. Several writers on abortion have attempted to construct an approach that could be categorized as neither traditionally "pro-life" nor "pro-choice"; see, for example, McLean S. Abortion law: is consensual reform possible? Journal of Law and Society 1990;17(1):106, and McCormick RA. Abortion: the unexplored middle ground. In: Monagle JF, Thomasma DC, eds. Health Care Ethics: Critical Issues. Aspen, 1994. Nonetheless, the fact remains that since virtually no one believes that abortion should be rendered compulsory, those who advocate further curbs on liberty in this area are advocating making abortion more difficult to obtain.
29. 26. It must of course be remembered that this is only a possibility; the majority of embryos implanted after IVF will not result in a successful pregnancy. See note 7, Human Fertilisation & Embryology Authority 1997, for statistics relating to implantation rates in U.K. clinics.
30. 27. The question of whether interests can survive the being who harbored those interests is philosophically contentious, but further consideration of the point will not be undertaken here. See Parfit D. Reasons and Persons. Oxford: Oxford University Press, 1984.
31. 28. Burgess JA, Tawia SA. When did you first begin to feel it? Locating the beginning of human consciousness. Bioethics 1996;10(1):25.
32. 29. Dworkin R, Life's Dominion. New York: HarperCollins, 1993:16.
33. 30. It is usually assumed that an interest in avoiding physical pain accompanies the onset of sentience (the ability to experience that pain) and predates any other interest. See, e.g., note 29, Dworkin 1993.
34. 31. "An interest, however the concept is finally to be analyzed, presupposes at least rudimentary cognitive equipment. Interests are compounded out of desires and aims, both of which presuppose something like . . . cognitive awareness." Feinberg J. The rights of animals and unborn generations. In: Feinberg J. Rights, Justice, and the Bounds of Liberty. Princeton, N.J.: Princeton University Press, 1980:168.
35. 32. See note 28, Burgess, Tawia 1996:2.
36. 33. Kuljis RO. Development of the human brain: the emergence of the neural substrate for pain perception and conscious experience. In: Beller Weir, eds. The Beginning of Human Life. Dordrecht: Kluwer Academic Publishers, 1994:50.
37. 34. See note 32, Kuljis 1994:55.
38. 35. The Royal College of Obstetricians and Gynaecologists Working Party. Fetal Awareness. London: RCOG Press, 1997:16. See also Grobstein C. Science and the Unborn. New York: Basic Books, 1988:55.
39. 35. The Royal College of Obstetricians and Gynaecologists Working Party. Fetal Awareness. London: RCOG Press, 1997:16. See also Grobstein C. Science and the Unborn. New York: Basic Books, 1988:55.
40. 36. Steinbock B. The moral status of extracorporeal embryos. In: Dyson Harris, eds. Ethics and Biotechnology. London: Routledge, 1994:84.
41. 37. The Guardian 1996;July 2.
42. 38. See note 36, Steinbock 1994:81.
43. 39. Ronald Dworkin expresses the view that "the sanctity or inviolability of every stage of every human life" is "a value that unites us all as human beings." See note 29, Dworkin 1993:238. Although the attribution of intrinsic value to all human life is a common position, the claim that it is universally shared seems a considerable exaggeration.
44. 40. In discussing the issue of offense to others caused by abortion, Steinbock draws an illuminating parallel with the issue of flag burning in the United States.
45. 41. See note 31, Feinberg 1980:167.
46. 42. Harris J. Wonderwoman and Superman. Oxford: Oxford University Press, 1992:55.
47. 43. See note 27, Parfit 1984.
48. 44. See note 29, Dworkin 1993:19.
49. 45. As Morgan and Lee have pointed out, the act stopped short of specifying that children's welfare be accorded paramount importance; Blackstone's Guide to the Human Fertilisation & Embryology Act 1990. Blackstone Press, 1991:146.
50. 46. Human Fertilisation & Embryology Authority. Code of Practice. London: Human Fertilisation & Embryology Authority, 1995:3.17 (b).
51. 47. See note 46, Human Fertilisation & Embryology Authority 1995:1.17 (d).
52. 48. See note 46, Human Fertilisation & Embryology Authority 1995:1.17 (g). This last clause, together with s.13(5) of the 1990 act, stress that the concern of the legislature and of the HFEA is with the interests of children in general, rather than merely with those children born as a result of the treatment. Whether the interests of children ought automatically to be afforded priority status is of course a moot point.
53. 49. See Golumbock, Rust. The Warnock Report and single women: what about the children? Journal of Medical Ethics 1986;12:182.
54. 50. See Hope T, Lockwood G, Lockwood M. Should older women be offered in vitro fertilisation? British Medical Journal 1995;310:1455-8.
55. 51. See Hanscombe G, The right to lesbian parenthood. Journal of Medical Ethics 1983;133. See also Chadwick R. Having children: introduction. In: Chadwick R, ed. Ethics, Reproduction and Genetic Control. London: Routledge 1990; and Millbank J. Every sperm is sacred? Alternative Law Journal 1997;22(3):126-9.
56. 51. See Hanscombe G, The right to lesbian parenthood. Journal of Medical Ethics 1983;133. See also Chadwick R. Having children: introduction. In: Chadwick R, ed. Ethics, Reproduction and Genetic Control. London: Routledge 1990; and Millbank J. Every sperm is sacred? Alternative Law Journal 1997;22(3):126-9.
57. 51. See Hanscombe G, The right to lesbian parenthood. Journal of Medical Ethics 1983;133. See also Chadwick R. Having children: introduction. In: Chadwick R, ed. Ethics, Reproduction and Genetic Control. London: Routledge 1990; and Millbank J. Every sperm is sacred? Alternative Law Journal 1997;22(3):126-9.
58. 52. See note 50, Hope, Lockwood, Lockwood 1995:1456.
59. 53. Kuhse H, Singer P. On the ethics of bringing people into existence. Bioethics 1998; 12(2):iii.
60. 54. Chadwick R. The perfect baby. In: Chadwick R, ed. Ethics, Reproduction and Genetic Control. London: Routledge, 1990:112.
61. 55. It is of course recognized that this is a grossly oversimplified account of the kind of information PGS could provide. The idea that the quality of a life could be predicted in such a detailed manner is highly dubious, even if it were possible to detect the presence of a much wider range of genetic traits than technology presently allows. Nonetheless, this thought experiment allows us to consider hypothetically some of the ethical issues to which this subject gives rise.
62. 56. See note 27, Parfit 1984:358.
63. 57. A rare but ethically troubling state of affairs, which will be briefly considered below.
64. 58. See note 27, Parfit 1984:359.
65. 59. Williams B. Who might I have been? In: Ciba Foundation. Human Genetic Information: Science, Law and Ethics, Symposium 149. Chichester: John Wiley & Sons, 1990:169.
66. 60. Purdy, LM. In: Callahan JC, ed. Reproduction, Ethics and the Law: Feminist Perspectives. Bloomington: Indiana University Press, 1995:314.
67. 61. See note 60, Williams 1990:169.
68. 62. See note 60, Williams 1990:169.
69. 63. See Glover J. The Philosophy and Psychology of Personal Identity. Hammondsworth: Penguin Books, 1988; as well as note 27, Parfit 1984, and Heyd D. Genethics. Los Angeles: University of California Press, 1992.
70. 63. See Glover J. The Philosophy and Psychology of Personal Identity. Hammondsworth: Penguin Books, 1988; as well as note 27, Parfit 1984, and Heyd D. Genethics. Los Angeles: University of California Press, 1992.
71. 63. See Glover J. The Philosophy and Psychology of Personal Identity. Hammondsworth: Penguin Books, 1988; as well as note 27, Parfit 1984, and Heyd D. Genethics. Los Angeles: University of California Press, 1992.
72. 64. These are generally spoken of as the two complementary elements of any utilitarian obligation, denoting, respectively, the duties to benefit and to refrain from harming.
73. 65. See note 64, Heyd 1992:120.
74. 66. See note 64, Heyd 1992:57.
75. 67. Value, obligation and the asymmetry question. Bioethics 1998;12(2):115.
76. 68. See note 27, Parfit 1984:386.
77. 69. See note 27, Parfit 1984:388.
78. 70. See note 64, Heyd 1992:57.
79. 71. See note 64, Heyd 1992:Preface.
80. 72. It may also be expected to be less intuitively repellent to those who subscribe to the Kantian imperative that no person should be treated solely as a means to some other end.
81. 73. It should be stressed that it is not being contended that either of the impersonal approaches would constitute an axiom that is internally logically incoherent. Rather, the total and average approaches are being rejected on the grounds that they lead to conclusions that would result in their being deemed unacceptable by almost everyone. It is further contended that an examination of PGS, or any other topic, from an ethical perspective to which no one adheres would be of negligible interest to prospective readers and negligible practical value to the debate.
82. 74. See note 64, Heyd 1992:Preface.
83. 75. See note 27, Parfit 1984:394.
84. 76. See note 27, Parfit 1984:118.
85. 77. Brock DW. The non-identity problem and genetic harms: the case of wrongful handicaps. Bioethics 1995;9(3/4):269-75, 269.
86. 78. Roberts MA. Present duties and future persons: when are existence-inducing acts wrong? Law and Philosophy 1995;14:297-327, 316.
87. 79. See note 64, Heyd 1992:11.
88. 80. See note 64, Heyd 1992:98. It is of course reasonable to suggest that all future persons are subject to human choice, in that a sudden global rush to embrace celibacy would ensure that no humans will populate the planet in two hundred years' time. For that reason, it is perhaps better to speak of actual future persons as being those who will exist in the future independent of the content of a particular decision.
89. 81. See note 64, Heyd 1992:96.
90. 82. Assuming that no embryo exists that would lead to a person with a life worse than nonexistence.
91. 83. See note 78, Brock 1995.
92. 84. See, e.g., Glover J. Causing Death and Saving Lives. Hammondsworth: Penguin, 1977:70.
93. 85. Munthe M. The argument from transfer. Bioethics 1996;10(1):26-42. It should be noted that Munthe's argument does not rely upon a belief in generocentrism - i.e., that concern should be restricted to actual persons - nor indeed does it require a belief that the interests of actual persons be accorded priority over those of potential future persons. Rather, his claim is based on the reasoning that while creating a worthwhile life involves an improvement in overall utility of +1, there are in existence a considerable number of persons whose lives are in fact so bad as to be subjectively worse than nonexistence, and to whom we could accord a utility rating of -1. Obviously, if it were possible to render these existing lives subjectively valuable by using the resources that would have been spent on a new person, this would be the better course of action, since the improvement from -1 to +1 is greater than the improvement from 0 to +1. His argument, of course, depends for its success on the assumptions that (i) there are in existence significant numbers of persons whose lives are worse than nonexistence, and (ii) these lives could be made worthwhile by the deployment of the resources that would otherwise have been spent on procreation.
94. 86. See Rachels S. Is it good to make happy people? Bioethics 1998;12(2):109.
95. 87. Glover J. What Sort of People Should There Be? Hammondsworth: Penguin, 1984:48.
96. 88. See note 27, Parfit 1984:443.
97. 89. See note 23, Feinberg 1994:189.
98. 90. See, for instance, Lippman A. The genetic construction of prenatal testing: choice, consent, or conformity for women? In: Rothenberg Thomson, eds. Women and Prenatal Testing: Facing the Challenges of Genetic Technology. Athens: Ohio State University Press, 1994.
99. 91. See Saxton M. Born and unborn: the implications of reproductive technologies for people with disabilities. In: Arditti R, et al., eds. Test-Tube Women: What Future for Motherhood? Pandora Press, 1984. See also Morris J. Tyrannies of perfection. New Internationalist 1992;July.
100. 91. See Saxton M. Born and unborn: the implications of reproductive technologies for people with disabilities. In: Arditti R, et al., eds. Test-Tube Women: What Future for Motherhood? Pandora Press, 1984. See also Morris J. Tyrannies of perfection. New Internationalist 1992;July.