The uncertain scope of reproductive autonomy in preimplantation genetic diagnosis and selective abortion

Medical Law Review

Volumn 13, Issue 3, 2005, Pages 291-327

  Scott, Rosamund ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

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EID: 28644443340     PISSN: 09670742     EISSN: None     Source Type: Journal    
DOI: 10.1093/medlaw/fwi021     Document Type: Review

References (143)

1. [2003] EWHC 3318. The sequelae to this hearing are outlined in s. IV(B).
2. The relevant part of s. 1 (1) of the Act reads: 'Subject to the provisions of this section, a person shall not be guilty of an offence under the law relating to abortion when a pregnancy is terminated by a registered medical practitioner if two registered medical practitioners are of the opinion, formed in good faith ... (d) that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped'.
3. HFEA and HGC, Outcome of the Public Consultation on Preimplantation Genetic Diagnosis, 18 June 2001, Rec. 11. The reference to the 'precautionary principle' is in para. 25.
4. Ibid. See discussion in s. IV.
5. On this point, see M. Brazier, 'Regulating the Reproduction Business' (1999) 7 Med. L. Rev. 166. Brazier observes that 'all too often crucial issues of individual rights, the balance between rights and public policy, and issues of conflicting rights are skated over' (at 167).
6. See e.g. R. Dworkin, Life's Dominion: An Argument about Abortion and Euthanasia (HarperCollins 1993);
7. J. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (Princeton University Press 1994).
8. A. Buchanan, D. Brock, N. Daniels and D. Wikler, From Chance to Choice: Genetics and Justice (Cambridge University Press 2000) 214.
9. O. O'Neill, Autonomy and Trust in Bioethics (Cambridge University Press 2002).
10. Ibid. at 61. It is not clear that writers such as Ronald Dworkin, John Robertson and John Harris, whose work on 'reproductive autonomy' or 'procreative liberty' she critiques here, in fact consider that these concepts are concerned with self-expression. Rather, the focus in their work would appear to be on aspects of self-determination. O'Neill's repeated use of the term 'self-expression' is therefore somewhat puzzling. However, the term 'self-expression', when applied to the wish actually to determine the features of another, captures something of what may be troubling about this desire.
11. For example, A. Buchanan et al, supra n. 7;
12. J. Robertson, 'Genetic Selection of Off-spring Characteristics' (1996) 76 Boston U. Law Rev. 421;
13. B. Steinbock, 'Disability, Prenatal Testing and Selective Abortion' in E. Parens and A. Asch (eds), Prenatal Testing and Disability Rights (Georgetown University Press 2000) 108;
14. J. Botkin, 'Line Drawing: Developing Professional Standards for Prenatal Diagnostic Services' in E. Parens and A. Asch, ibid. at 288.
15. See e.g. T. Shakespeare, 'Choices and Rights: Eugenics, Genetics and Disability Equality' (1998) 13(5) Disability and Society 665, 672.
16. Ibid. at 681.
17. Ibid. at 672.
18. For further discussion of this issue, see also R. Scott, 'Prenatal Testing, Reproductive Autonomy and Disability Interests' (2005) 14(1) Cambridge Quarterly of Healthcare Ethics 65.
19. T. Shakespeare, '"Losing the Plot?" Medical and Activist Discourses of Contemporary Genetics and Disability'. (1999) 21(5) Sociology of Health and Illness 669, 685.
20. HFEA and AGCT, Consultation Document on Preimplantation Genetic Diagnosis, Nov. 1999.
21. Supra, n. 3.
22. The issue in this case was whether the HFEA could license HLA typing by PGD to enable a child to be born who would be a tissue match for a sibling with beta thalassaemia major. In the Court of Appeal ([2003] E.W.C.A. Civ. 667), Phillips, Schiemann and Mance LJ.J. all held that PGD for the purpose, not simply of ensuring that a woman was able to bring a pregnancy to term (as Maurice Kay J. had held below), but also to ensure that a child would be free from genetic abnormalities, is lawful under the HFE Act 1990. The key statutory provisions requiring interpretation are s. 2(1) and para. 1(1)(d) of Shed. 2. Section 2(1) states: '(1) In this Act... 'treatment services' means medical, surgical or obstetric services provided to the public or a section of the public for the purpose of assisting women to carry children.' Para. 1 of Sched. 2 provides: '(1) A licence under this paragraph may authorise any of the following in the course of providing treatment services - ... (d) practices designed to secure that embryos are in a suitable condition to be placed in a woman or to determine whether embryos are suitable for that purpose ... (3) A licence under this paragraph cannot authorise any activity unless it appears to the authority to be necessary or desirable for the purpose of providing treatment services.' In July 2004 the HFEA announced that selection of an embryo which would have the same tissue type as an existing ill sibling would be legal even where the embryo itself was not at risk of a serious genetic condition. Permission must still be sought from the HFEA in each case and the procedure should be a 'last resort'. 'HFEA Agrees to Extend Policy on Tissue Typing', 21 July 2004. The earlier decision on the case of the Whittaker family was contrary to this position.
23. In April 2005, the House of Lords ([2005] 2 All E.R. 555), unanimously dismissed the appeal against the Court of Appeal judgment, which also questioned the HFEA's revised policy. Lord Brown defined the issue raised by the case as 'whether the [HFEA] ... is empowered by the 1990 Act to license tissue typing ...' (at para. 42). He went on to state that the '[t]he critical question ... is whether tissue testing is a practice designed to determine whether an embryo is suitable for placing in a woman (para. 1(1)(d)) and necessary or desirable for the purpose of providing a medical service which itself is to assist a woman to carry the child (section 2(1))' (at para. 49). The House held, per Lord Hoffmann (at para. 35), 'that both PGD and HLA typing could lawfully be authorised by the authority as activities to determine the suitability of the embryo for implantation within the meaning of paragraph 1(1)(d)'.
24. For discussion of the issue of HLA typing in this context see S. Sheldon and S. Wilkinson, 'Hashmi and Whittaker: An Unjustifiable and Misguided Distinction?' (2004) 12 Med. L. Rev. 137. Although I make further reference to the Quintavalle case, this article concentrates on PGD in the general (i.e. non-HLA typing) case.
25. HFEA, Code of Practice: Sixth Edition (2003) para. 14.1.
26. F. Flinter, 'Preimplantation Genetic Diagnosis Needs to be Tightly Regulated' (2001) 322 BMJ 1008, 1008-9.
27. For information on the severity of this condition see e.g. National Tay-Sachs and Allied Diseases Association, Inc. http://www.ntsad.org/ pages/t-sachs.htm.
28. For information, see e.g. The Muscular Dystrophy Campaign, http://www.muscular-dystrophy.org/information/KeyFacts/duchenne.html.
29. The quotation is from HFEA/HGC, Minutes of Joint Working Party on Preimplantation Genetic Diagnosis, 20 Dec. 2000, para. 4.
30. Doubts about the use of PGS in relation to the improvement of IVF outcomes are expressed in e.g. D. Hill, 'Ten Years of Preimplantation Genetic Diagnosis-Aneuploidy Screening: Review of Multi-Center Report' (2004) 82(2) Fertil. & Steril. 300.
31. A. Ferriman, 'UK Approves Preimplantation Genetic Screening Technique' (2001) 323 BMJ 125.
32. The HFEA and HGC were clearly worried about the human rights implications of the fact that the technique was already available elsewhere in Europe. HFEA/HGC, supra, n. 23, para. 8.
33. HFEA, supra n. 19, para. 14.27. '"Expected to" or "expected that" ... indicates what is to be regarded as the proper conduct of licensable activities or as suitable practice within licensed centres.'
34. Ibid. at 123.
35. The HFE Act, s. 13(5) states: 'A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father), and of any other child who may be affected by the birth.'
36. For thoughtful criticism, see esp. E. Jackson, 'Conception and the Irrelevance of the Welfare Principle' (2002) 65(2) MLR 176. In January 2005, the HFEA launched a consultation document on this issue, entitled 'Welfare of the Child: Tomorrow's Children'.
37. E. Jackson notes the possibility that the section is relevant in Regulating Reproduction (Hart 2001) 245.
38. In the Court of Appeal decision in the Quintavalle case, supra, n. 18, Mance L.J. held (at para. 122) that the 'requirement ... must not only apply before, but continue throughout the administration of treatment services'. This consideration formed part of the argument towards allowing tissue typing, since s. 13(5) allows account to be taken of 'any other child who may be affected by the birth'. This aspect was not addressed in the House of Lords' decision.
39. D. Parfit, Reasons and Persons (OUP 1984) ch. 16.
40. That is to say, in line with Parfit's arguments in ibid.
41. D. Brock, 'The Non-Identity Problem and Genetic Harms: The Case of Wrongful Handicaps' in J. Arras and B. Steinbock (eds), Ethical Issues in Modern Medicine, 5th edn (Mayfield 1999) 397. Reprinted from (1995) 9(3/4) Bioethics 289. Brock employs a same number, rather than a same person, analysis to show that in 'wrongful handicap' cases (which are cases in which 'the person's handicap leaves him with a worthwhile life, a life that is better than no life at all' (at 398)), in his view 'if any one is wronged it is the class - [a parent's children] whom [they] permit ... without adequate reason or justification to be worse off than [their] children could have been. But if this class - [their] children - has been wronged, it is in a sense from which it does not follow that any member of that class - that is, any one child - has been wronged' (at 400).
42. For further discussion, see e.g. A. Buchanan et al., supra, n. 7, 242-55. Some philosophers may object to the idea that one can wrong a class without wronging an individual, a point drawn to my attention by Roger Crisp.
43. Supra, n. 3, para. 4.
44. HFEA Press Release, 'HFEA Announce New Process to Speed up Applications for Embryo Screening', 19 Jan. 2005: 'Under the new guidelines, if a clinic, with proven expertise in performing embryo biopsies, applies for a licence to carry out screening for a particular condition, which is already being carried out successfully in another clinic - such as screening for sickle cell anaemia, cystic fibrosis and Duchenne's muscular dystrophy - the HFEA will approve the application without having to go through the full HFEA licence committee process, providing the same technique and methods are used'.
45. Supra n. 3, para. 4. The meaning of 'prevailing moral attitudes' is uncertain. One interpretation, suggested by a referee for this article, could be 'what the public will tolerate'.
46. Ibid. Rec. 1.
47. Ibid. Recs. 3 and 4 respectively.
48. HGC, Minutes of Plenary Meeting, 2 Mar. 2001, para. 4.5, per Professor Burn, as paraphrased in the minutes.
49. Supra, n. 2.
50. RCOG, Termination of Pregnancy for Fetal Abnormality in England, Wales and Scotland (RCOG Press, Jan. 1996), para. 3.4. The guidance continues: 'After 24 weeks the grounds for abortion for mental health are more stringent; the continuation of the pregnancy must result in grave permanent damage to mental health. Such damage to mental health is unlikely to result from a woman's concern about a fetal abnormality that her doctors do not consider serious enough to satisfy the law. In effect this means that after 24 weeks the abortion decision must be based only on the anticipated risk that the child would be seriously handicapped'.
51. Offences Against the Person Act 1861, ss. 58 and 59.
52. See e.g. S. Sheldon, 'Who is the Mother to Make the Judgment? The Construction of Woman in English Abortion Law' 1 Fem. Leg. Stud. (1993) 3;
53. S. Sheldon, 'The Law of Abortion and the Politics of Medicalisation' in J. Bridgman and S. Millns (eds), Law and Body Politics: Regulating the Female Body (Dartmouth 1995) 105;
54. E. Jackson, 'Abortion, Autonomy and Prenatal Diagnosis' (2000) 9(4) Social and Legal Studies 467.
55. For example, in Rand v. East Dorset Health Authority [2000] 56 B.M.L.R. 39, 48, Newman J. refers to the 'legal right accorded to parents by the 1967 Act as relevant to the ambit of the duty of care assumed by those having responsibility in connection with childbirth'.
56. For relevant critiques, see supra, n. 41.
57. HFEA, Guidance on Preimplantation Testing. This was sent to clinics on 15 May 2003.
58. H. Draper and R. Chadwick, 'Beware! Preimplantation Genetic Diagnosis May Solve Some Old Problems but It Also Raises New Ones' (1999) 25 JME 114, 119. Chadwick and Draper note that disputes will arise, not just in deciding whether to treat, as is normally the case in relation to IVF, but in deciding which embryos to implant.
59. For discussion, see R. Scott, 'Prenatal Screening, Autonomy and Reasons: The Relationship between the Law of Abortion and Wrongful Birth' (2003) Med. L. Rev. 265. However, 'it is a well documented phenomenon that women without a diagnosis of anything found to be wrong have an increased rate of "social" termination after screening (especially with nuchal translucency) as the question of "query normal" has been raised'. Personal communication: Anonymous referee for this article.
60. Supra, n. 3, para. 32 and Rec. 13, my emphases.
61. Para. 34 addresses the issue of information provision, especially the need for balanced information which includes 'that provided by disabled people and their families', an issue to which I return later.
62. Ibid. at para. 21, my emphasis. This paragraph is concerned with the relevance of RGOG guidance on termination of pregnancy, to which I return in due course.
63. HFEA/HGC, Minutes of Joint Working Party on Preimplantation Genetic Diagnosis, 30 Mar. 2001, para. 5.4.
64. See R. Scott, supra, n. 46.
65. Supra, n. 3, Annex C.
66. HFEA/HGC, supra, n. 49, para. 5.11, my emphasis.
67. HFEA/HGC, Minutes of Joint Working Party on Preimplantation Genetic Diagnosis, 11 May 2001, para. 5.15, my emphasis.
68. HGC, Minutes of Genetic Testing Subgroup, 12 Jan. 2001, para. 5.4, per Dr Flinter, my emphases.
69. Supra, n. 3. The recommendation goes on to state that 'information provided to those seeking treatment ... should include genetic and clinical information about the specific condition; its likely impact on those affected and their families; information about treatment and social support available; and the testimony of families and individuals about the full range of experiences of living with the condition'. Curiously, a somewhat puzzling variation of the point in Rec. 14 can be found in the Summary of the responses to the Consultation Document which at one point observes that '80% agreed that the seriousness of a genetic condition should be a matter of clinical judgment based on general guidance'. HFEA/HGC, Analysis of the Responses to the Joint HFEA/AGCT Consultation on PGD, para. 56(iv), my emphases.
70. The views of one practitioner on this point are expressed as follows: '(1) Certain chromosome translocations tested for in PGD would be a serious genetic condition in an embryo (causing miscarriage but not leading to the birth of a child) and, (2) An adult onset condition, such as Huntingtons, would be a serious genetic condition that is present in an embryo (and expressed 40-50 years later), but could not be classified as a physical or mental abnormality that would lead a child to suffer from serious handicap. I do not think that any fetal medicine practitioner would contemplate a late termination (after 24 weeks) on this basis, though they might do an early TOP and ring clauses C or D'. Personal communication: Anonymous referee for this article.
71. Supra, n. 3, para. 23, my emphasis.
72. The potential latitude of the meaning of 'suitable' for the purposes of para. 1 of Sched. 2 of the HFEA Act 1990 was an issue of concern in the Quintavalle case, supra, n. 18.
73. Addressing this point in the House of Lords, Lord Brown observed (at para. 62): 'The fact is that once the concession is made (as necessarily it has to be) that PGD itself is licensable to produce not just a viable foetus but a genetically healthy child, there can be no logical basis for construing the authority's power to end at that point. PGD with a view to producing a healthy child assists a woman to carry a child only in the sense that it helps her decide whether the embryo is 'suitable' and whether she will bear the child. Whereas, however, suitability is for the woman, the limits of permissible embryo selection are for the authority. In the unlikely event that the authority were to propose licensing genetic selection for purely social reasons, Parliament would surely act at once to remove that possibility, doubtless using for the purpose the regulation making power under section 3(3)(c). Failing that, in an extreme case the court's supervisory jurisdiction could be invoked' (my emphasis). As we know, by means of its Consultation and Outcome Documents, the HFEA (with the HGC) has indeed determined 'the limits of permissible embryo selection' in the general (i.e. non-HLA typing) case, such that a 'significant risk' of a 'serious genetic condition' is required. Testing and selection is only permissible under these terms. As we have seen, these criteria are in turn embodied in its latest Code of Practice. As for the compatibility of HLA typing with the notion of 'suitable' and whether the licensing of this technique 'appears to the authority to be necessary or desirable for the purpose of providing treatment services' for the purposes of para. 1(3) of Sched. 2, note that in the Court of Appeal Mance L.J. observed (at para. 134): [T]he crucial distinction has been put as being between "screening out abnormalities" and "screening in preferences". That distinction raises a spectre of eugenics and "designer babies". But it is a crude over-simplification to view this case as being about "preferences". The word suggests personal indulgence or predilection and the luxury of a real choice.' He appears, in effect, to be pointing to the moral seriousness of the reason for testing in the Quintavalle case, namely to provide a cure for the affected sibling.
74. For interesting thoughts on this aspect, see e.g. S. Suter, 'The Routinization of Prenatal Screening' (2002) 28 Am. J.L. & Med. 233.
75. In 2003 the HFEA described PGD as being between 90 and 95% accurate. HFEA, supra, n. 19, para. 14.28(v).
76. For interesting research on when people would be prepared to engage in IVF and PGD, see M.M. Vergeer, F. van Balen and E. Ketting, 'Preimplantation Genetic Diagnosis as an Alternative to Amniocentesis and Chorionic Villus Sampling: Psychosocial and Ethical Aspects' (1998) 35 Patient Education and Counselling 5. Those interviewed were biologists and physicians working in or engaged in advanced reproductive research on the one hand and social scientists, psychologists and ethicists with advanced knowledge or interest in reproductive technologies on the other (para. 2.1). The groups thought that IVF itself would be perceived as least burdensome where couples had experience of a previous termination for reasons of fetal impairment or the birth of an impaired child (para. 3.1). 'According to both panels PGD was expected to be the method of choice in situations of a high chance of a serious disorder and definitely not in the case of a low risk of a disorder that is not serious' (para. 4).
77. This is consistent with the wording of para. 32 noted above in text preceding n. 47.
78. See also para. 22.
79. HGC, Response to the Human Fertilisation and Embryology Authority on the Consultation on Preimplantation Genetic Diagnosis, para. 6.
80. As famously noted by Sir George Baker P. in Paton v. B.P.A.S. [1979] Q.B. 276, 282.
81. Supra, n. 1.
82. For accounts of these developments, see e.g. 'Cleft Lip Abortion to be Investigated', Guardian, 17 April 2004;
83. 'Curate Postpones Cleft Palate Late Abortion Action', Daily Telegraph, 9 May 2004;
84. and a CPS Press Release of 16 March 2005, entitled 'CPS Decides Not to Prosecute Doctors following Complaint by Rev Joanna Jepson', which reads, in part: 'The Chief Crown Prosecutor for West Mercia CPS, Jim England, said: "This complaint has been investigated most thoroughly by the police and the CPS has considered a great deal of evidence before reaching its decision ... The issue is whether the two doctors who had authorised the termination were of the opinion, formed in good faith, that there was a substantial risk that if the child were born it would suffer from such physical and mental abnormalities as to be seriously handicapped. I consider that both doctors concluded that there was a substantial risk of abnormalities that would amount to the child being seriously handicapped. The evidence shows that these two doctors did form this opinion and formed it in good faith. In these circumstances I decided there was insufficient evidence for a realistic prospect of conviction and that there should be no charges against either of the doctors." Mr England said the evidence considered by the CPS included medical records; guidance from the Royal College of Obstetricians and Gynaecologists; evidence from a number of professionals involved in the care, counselling and treatment in this case, and interviews of the two doctors. Opinions were also obtained from independent medical experts. "We took all these matters into account when reaching our decision that there was no offence."'
85. For Rev. Jepson's reaction, see C. Dyer, 'Doctor who Performed Late Abortion Will Not be Prosecuted' (2005) 330 BMJ 668. On 15 April Rev. Jepson issued a press statement (available at www.jjepson.org) which read: 'I have consulted my solicitor over the last few weeks and am advised that the decision of the CPS does not in any way protect disabled unborn babies in later stages of pregnancy. Prime responsibility for these abortions rests with the Secretary of State. I will therefore pursue this against the Secretary of State but will not be seeking the prosecution of the doctors concerned. Tragic as it is that this baby's life was ended, I hope this case will prevent further late term abortions.'
86. Supra, n. 1, para. 6, per Miss Mellows.
87. Ibid., para. 12, per Jackson J.
88. RCOG, supra, n. 39, para. 3.2.1.
89. Ibid.
90. Ibid., para. 3.4. The guidance goes on to note the World Health Organisation's definition of health as 'a state of physical, mental and social wellbeing and not merely an absence of disease or infirmity'. The RCOG guidance continues: 'In determining whether there is a risk to mental health in a particular pregnancy the medical practitioners have to identify factors in the woman's life and personality that would threaten her mental health if the pregnancy were to continue: They do not have to certify that she has a mental illness.'
91. For further discussion, see R. Scott, supra, n. 46.
92. RCOG, supra, n. 39, para. 3.3.1.
93. Point 3: 'Assisted performance. Includes the need for a helping hand (i.e. the individual can perform the activity or sustain the behaviour, whether augmented by aids or not, only with some assistance from another person.' Point 4: 'Dependent performance. Includes complete dependence on the presence of another person (i.e. the individual can perform the activity or sustain the behaviour, but only when someone is with him most of the time).'
94. RCOG, supra, n. 39, para. 3.3.
95. My emphasis. As suggested by an anonymous referee for this article.
96. Personal communication: Anonymous referee for this article.
97. In discussions between health professionals, a philosopher and sociologists, one (unnamed) obstetrician said: 'I think things are probably made more difficult because most obstetricians and gynaecologists know that terminations for social reasons, or whatever, are done effectively on demand, and one of the main reasons for that is because of anxiety generated about the pregnancy continuing ... our sort of baseline has shifted because of shifts in how the Abortion Act has been applied over the past 20 years or so.' C. Williams, P. Alderson and B. Farsides, '"Drawing the Line" in Prenatal Screening and Testing: Health Practitioners' Discussions' (2002) 4(1) Health, Risk and Society 61, 66.
98. In essence, Raz suggests that given that society at large is involved in facilitating the existence of the conditions which enables the pursuit of an autonomous life, it is unlikely that the interest of any one individual can justify imposing such an onerous duty on so many. It follows that there can be no right to personal autonomy as such, which means personal autonomy is one example of an ideal or value at the heart of our morality. J. Raz, 'Right-Based Moralities' in J. Waldron (ed.), Theories of Rights, 182, esp. 186-95. On Raz's view, derivative rights protect and advance aspects of the individual's autonomy and contribute to making autonomy possible.
99. Ibid. at 195.
100. For discussion see e.g. S. Sheldon, 'The Law of Abortion and the Politics of Medicalisation', supra, n. 43.
101. For recent thoughts on the system of regulation embodied in the HFE Act 1990, see M. Brazier, supra, n. 5.
102. Compare the heated and very public debate on 'saviour siblings' associated with the Quintavalle case, supra, n. 18.
103. This has been a troublesome issue in the United States and in Planned Parenthood of Southeastern Pennsylvania v. Casey, 120 L.Ed.2d 674 (1992),
104. the US Supreme Court sought to show how reproductive freedom could be accompanied by reproductive responsibility and thereby to strengthen the legal right established in Roe v. Wade, 35 L.Ed.2d 147 (1973).
105. For earlier concerns related to this issue, see Paton v. B.P.A.S., supra, n. 63.
106. See R. Scott, supra, n. 46.
107. E. Parens and A. Asch, 'The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations' in E. Parens and A. Asch (eds), supra, n. 10, 3, 28.
108. On the link between interests and sentience, see B. Steinbock, Life Before Birth (Oxford University Press 1992) 24, n. 24.
109. On the notion of interests, see J. Feinberg, Harm to Others (Oxford University Press 1984) 34: 'In general, a person has a stake in X... when he stands to gain or lose depending on the nature or condition of X'.
110. For discussion of this point see S. Sheldon and S. Wilkinson, 'Termination of Pregnancy for Reason of Foetal Disability: Are There Grounds for a Special Exception in Law?' (2001) 9 Med. L. Rev. 85.
111. For further thought on this see R. Scott, supra, n. 46.
112. Similar views can be found elsewhere. See e.g. T. Murray, The Worth of a Child (University of California Press 1996) 138.
113. For discussion see R. Scott, Rights, Duties and the Body: Law and Ethics of the Maternal-Fetal Conflict (Hart 2002) ch. 2.
114. The legal objection to this argument, as a matter of statutory interpretation, was put forward by D. Morgan in 'Abortion: The Unexamined Ground' [1990] Crim. L.R. 687.
115. The point is discussed in S. Sheldon and S. Wilkinson, supra, n. 86
116. and in R. Scott, 'Interpreting the Disability Ground of the Abortion Act' (2005) 64 CLJ 388.
117. Supra, n. 3, para. 23.
118. On the approval of medical discretion generally in the application of the Act, see Hansard, 21 June 1990, vol. 174, col. 1156, per Mrs Maria Fyfe: 'If the law sets parameters that do not allow medical judgments to be freely exercised, it must be defective.'
119. Supra, n. 39.
120. Supra, n. 3, para. 21.
121. Ibid., para. 22: 'It was noted that the WHO's revised classification, ICIDH-2: International Classification of Functioning, Disability and Health (WHO 2000), was currently in prefinal draft....'
122. See also HGC, Response to the Human Fertilisation and Embryology Authority on the Consultation on Preimplantation Genetic Diagnosis, para. 5, which refers to 'concerns that PGD should not be used to ... further disadvantage disabled people now and in the future'. The concern requires further analysis.
123. For discussion of this point, see R. Scott, supra, n. 14.
124. Supra, n. 3, para. 37.
125. Ibid., my emphasis.
126. See also HFEA, supra, n. 19, para. 14.23.
127. Ibid., para. 8, my emphasis.
128. For example, the Down's Syndrome Association, in 'Your Baby has Down's Syndrome: A Guide for Parents', states: 'About one in three children born with Down's syndrome has a heart defect. Some heart defects are quite minor, such as murmurs; some defects are severe, requiring medication and/or surgery' (at 8). One of various possible heart conditions is an atrio ventricular (septal) defect which 'can be corrected by major heart surgery in infancy, but for a few babies the operation is not medically advisable' (at 18).
129. Note the views of one practitioner on late-onset conditions in the PGD and abortion contexts respectively, supra, n. 56.
130. Note that testing for inherited colon cancer has now been licensed: On 1 Nov. 2004, the HFEA issued a press release entitled 'HFEA Licences PGD for Inherited Colon Cancer', which stated in part: 'Familial Adenomatous Polyposis Coli (FAP) ... is an inherited genetic severe colon condition with onset in many cases occurring in children in their early teens. It leads to multiple rectal and colon cancers in early adulthood for almost all of those affected by the condition. Those affected are likely to have prophylactic surgery in their early teens to remove their colon ... FAP is a serious condition - prenatal diagnosis and selective termination of affected cases has been offered in the past.' I do not have the scope further to discuss late-onset disorders, carrier embryos or the question of implanting 'affected' (for instance, deaf) embryos. Some reference is made to the legality of screening out carrier embryos in the Court of Appeal judgments in the Quintavalle decision, supra, n. 18. See e.g. Mance L.J. at para. 126.
131. The Down's Syndrome Association, supra, n. 100, provides a mixture of information on the condition, some of the flavour of which is given by the following: 'Children with Down's syndrome can and do grow up to live long and fulfilled lives. Provided they are allowed the opportunities they need to develop self-help skills and independence, people with Down's syndrome can thrive well into their fifties and beyond, facing many of the challenges we all encounter: School, further education, work and a home of one's own. Many children with Down's syndrome are now being integrated successfully into mainstream schools' (at 11). 'People with Down's syndrome all have a certain degree of learning disability (mental handicap). The degree of disability varies from person to person and it is impossible to tell at birth what that degree will be' (at 4).
132. See e.g. J. Harris, 'Is There a Coherent Social Conception of Disability?' (2000) 26 JME 95.
133. See e.g. T. Shakespeare, supra, n. 11.
134. For example, J. Harris and T. Shakespeare, supra, nn. 103 and 11.
135. J. Glover, Choosing Children: Genes, Disability and Design, Uehiro Lectures, Oxford, 2004.
136. A. Buchanan et al, supra, n. 7, esp. 291-3.
137. For discussion of the issue of discrimination in this context, see S. Sheldon and S. Wilkinson, supra, n. 86, 107-8.
138. Section 2 reads in part: 'In determining whether the continuance of a pregnancy would involve such risk of injury to health as is mentioned in paragraph (a) or (b) of subsection (1) of this section, account may be taken of the pregnant woman's actual or reasonably foreseeable environment...'
139. Whether the assistance in reproduction which IVF with PGD entails gives health professionals a greater ethical stake cannot be explored further here.
140. C. Williams et al, supra, n. 77, 66.
141. Of the current law on selective abortion, J. Gillott, 'Screening for Disability: A Eugenic Pursuit?' (2001) 27 JME supp II, 21, 23, observes: '[T]here is a deliberate element of ambiguity in relation to selective termination. Both the law and regulations are framed in such a way as to allow individuals and clinicians to come to an arrangement that meets individual needs in most cases. But they are also framed so as to deny absolute individual freedom of choice as a matter of principle.'
142. The pressure for the reasons for late-term abortions to be very serious
143. The place of prospective parents' views about the degree of risk arguably should be somewhat different in the PGD and abortion contexts. To some degree this is reflected in the use of the term 'significant risk' in the context of PGD and 'substantial risk' in the case of abortion. The requirement of 'substantial risk' in the latter case is part of the justification for aborting the fetus, which might well be considerably advanced in development. Since it is widely accepted that the fetus has greater moral status, this requirement has a legitimate purpose. The point is discussed in R. Scott, 'Choosing between Possible Lives: Legal and Ethical Issues in Preimplantation Genetic Diagnosis' (forthcoming, 2006) 26(1) OJLS.