Choosing between possible lives: Legal and ethical issues in preimplantation genetic diagnosis

Oxford Journal of Legal Studies

Volumn 26, Issue 1, 2006, Pages 153-178

  Scott, Rosamund ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ABORTION; ADVISORY COMMITTEE; ANALYTICAL APPROACH; ANIMAL EMBRYO; ARTICLE; CHILD; DECISION MAKING; DISABLED PERSON; EMBRYO; ETHICS; FEMALE; FETUS; GENETIC DISORDER; GENETIC SCREENING; HUMAN; HUMAN FERTILISATION AND EMBRYOLOGY AUTHORITY; HUMAN GENETICS COMMISSION (GREAT BRITAIN); LEGAL ASPECT; MEDICAL GENETICS; MOTIVATION; POLICY; PREGNANCY; PRENATAL DIAGNOSIS; QUALITY OF LIFE; SOCIOECONOMICS; UNITED KINGDOM;

ANALYTICAL APPROACH; HUMAN FERTILISATION AND EMBRYOLOGY AUTHORITY; HUMAN GENETICS COMMISSION (GREAT BRITAIN);

ABORTION, EUGENIC; ADVISORY COMMITTEES; CHILD; CHOICE BEHAVIOR; DISABLED PERSONS; EMBRYO; EMBRYO, MAMMALIAN; ETHICAL ANALYSIS; EUGENICS; FEMALE; FETUS; GENETIC DISEASES, INBORN; GENETIC SCREENING; GENETIC TESTING; GREAT BRITAIN; HUMANS; MOTIVATION; PREGNANCY; PREIMPLANTATION DIAGNOSIS; PUBLIC POLICY; QUALITY OF LIFE; VALUE OF LIFE;

EID: 28644437959     PISSN: 01436503     EISSN: 14643820     Source Type: Journal    
DOI: 10.1093/ojls/gqi048     Document Type: Article

References (164)

1. For scholars supporting this view, see below nn 52 and 53.
2. As J. Glover notes, the distinction between 'negative' and 'positive' selection 'is sometimes a blurred one, but often we can at least roughly see where it should be drawn'. J. Glover, What Sort of People Should There Be? (Harmondsworth: Penguin, 1984) 31-2.
3. A limited type of positive selection is currently in use and was considered in The Queen on the Application of Quintavalle v Human Fertilisation and Embryology Authority [2003] EWCA Civ 667 (CA),
4. [2005] 2 All ER 555 (HL).
5. 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] EWCA Civ 667), Phillips, Schiemann and Mance LJJ 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 Sched 2. Section 2(1) states: '(1) In this Act..."treatment service" 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 license 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 license 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.
6. In April 2005, the House of Lords ([2005] 2 All ER 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 Hoffman (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)'.
7. 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 Law 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.
8. HFEA Press Release, 'HFEA Reduces Maximum Number of Embryos Transferred in Single IVF treatment from Three to Two', 8 August 2001. The HFEA's commitment to reducing the number of multiple births has been strengthened in its Code of Practice-Sixth Edition, which only allows for the implantation of three embryos in women over 40. Embryos which are not chosen will be discarded or used in research. Freezing may also be a possibility, but then the intention would be to implant some of the embryos in the future.
9. HFEA and Advisory Committee on Genetic Testing (AGCT), Consultation Document on Preimplantation Genetic Diagnosis, November 1999.
10. HFEA and HGC, Outcome of the Public Consultation on Preimplantation Genetic Diagnosis, June 2001.
11. Ibid, para 25. On the possible interpretations of such an approach, see the Government Response to the Report from the House of Commons Science and Technology Committee: Human Reproductive Technologies and the Law (2005) paras 5 and 6, in response to the Committee's Rec 2, para 46 and Rec 3, para 47, below n 40.
12. The relevant part of s 1(1) of the Abortion Act 1967 (as amended by the HFE Act 1990) 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'. Whether the term 'handicap', 'impairment' or 'disability' is used in this context is not a neutral point. Exclusive use of the term 'disability' is associated with a purely 'medical' model of disability which has been discredited, though not successfully replaced, by the 'social model'. Proponents of either model have accepted to some degree the limitations of their respective approaches and, as Jonathan Glover has recently noted, '[i]t is time to give up this debate, as it is now unfruitful for the same reason that makes the "nature-nurture" debate unfruitful. To many disabilities, there is a contribution from a variety of sources, including functional limitation and social context'. J. Glover, Choosing Children-Genes, Disability and Design (Oxford: OUP, 2006) 7-8 (footnote omitted). Since some combination of the 'medical' and 'social' models is best placed to account for the significance of impairment or disability, I interchange the terms 'disability' and 'impairment'.
13. On the Interest theory, for instance, Joseph Raz argues that to say that an individual has a right means, 'other things being equal, an aspect of x's well-being (his interest) is a sufficient reason for holding some other person(s) to be under a duty'. J. Raz, 'Right-based Moralities' (1982) in J. Waldron (ed.), Theories of Rights (Oxford: OUP, 1984) 182, 183.
14. The predominantly countervailing Choice Theory is H.L.A. Hart's, as in his 'Are There Any Natural Rights?', in J. Waldron (ed.), Theories of Rights (Oxford: OUP, 1984) 77.
15. H.L.A. Hart, 'Bentham on Legal Rights' in A.W.B. Singer (ed.), Oxford Essays in Jurisprudence, Second Series (Oxford: OUP, 1973) 196-8.
16. See J. Waldron (ed.), 'Introduction', above n 8.
17. For further discussion of the basis of rights particularly in the medical context, see R. Scott, Rights, Duties and the Body: Law and Ethics of the Maternal-Fetal Conflict (Oxford: Hart Publishing, 2002) 15-20.
18. Generally see also A. Buchanan, D. Brock, N. Daniels, D. Wikler, From Chance to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2000) 207 for the view that rights arguments need support, which can be found by showing how rights protect important underlying interests and choices.
19. (Simplifying a complex argument) 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, above n 8, esp. 186-95. On Raz's view, derivative rights protect and advance aspects of the individual's autonomy and contribute to making autonomy possible.
20. Ibid at 195.
21. HFEA, Code of Practice-Sixth Edition, above n 3, para 14.1.
22. F. Flinter, 'Preimplantation Genetic Diagnosis Needs to be Tightly Regulated' (2001) 322 BMJ 1008, 1008-9.
23. 'The classical form of Tay-Sachs disease (TSD) is a fatal genetic disorder in children that causes progressive destruction of the central nervous system...By about two years of age, most children experience recurrent seizures and diminishing mental function. The infant gradually regresses, losing skills one by one, and is eventually unable to crawl, turn over, sit, or reach out. Other symptoms include increasing loss of coordination, progressive inability to swallow and breathing difficulties. Eventually, the child becomes blind, mentally retarded, paralyzed, and non-responsive to his or her environment. To date, there is no cure or effective treatment for TSD'. National Tay-Sachs and Allied Diseases Association, Inc. http://www.ntsad.org/pages/t-sachs.htm.
24. According to the Muscular Dystrophy Campaign, '[t]his is a very serious condition. Most affected boys develop the first signs of difficulty in walking at the age of 1 to 3 years and are usually unable to run or jump ...they often struggle to climb stairs...Rising from the floor can also prove difficult. As the condition progresses...[they]... are unable to walk as far or as fast as other children and may occasionally fall down. Some...also have learning and or behavioural difficulties, which may begin to manifest at this stage. By about 8 to 11 years...boys become unable to walk and by their late teens or twenties the condition is severe enough to shorten life expectancy. There are however many forms of management which are now available, which have changed the outlook and which we believe in most cases can help with the complications of the condition'. http:// www.muscular-dystrophy.org/ information/KeyFacts/duchenne.html.
25. HFEA/HGC, Minutes of Joint Working Party on Preimplantation Genetic Diagnosis, 20 December 2000, para 4.
26. 'This screening aims to inform clinicians and potential parents about which embryos are most viable'. 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.
27. For news of recent research into the extent of genetic anomalies in eggs, with possible implications for the practice of PGS and comments by the HFEA, see Progress Educational Trust, Bionews 331, 18-24/10/2005, at http://www.Bionews.org.uk.
28. A. Ferriman, 'UK Approves Preimplantation Genetic Screening Technique' (2001) 323 BMJ 125.
29. 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, Minutes of Joint Working Party on Preimplantation Genetic Diagnosis, 20 December 2000, para 8.
30. HFEA, above n 3, para 14.27. '"[E]expected that"... indicates what is to be regarded as the proper conduct of licensable activities or as suitable practice within licensed centres'.
31. Ibid at 123.
32. The key statutory provisions of the HFE Act are detailed above n 2. HFEA, Code of Practice, above n 3.
33. The licensing provisions for PGD are outlined in the HFEA's and HGC's Outcome Document, above n 5, para 4.
34. On 19 January 2005, the HFEA issued a press release entitled 'HFEA Announce New Process to Speed up Applications for Embryo Screening', which reads in part: '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.'
35. In full, 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'. For thoughtful criticism, see esp. E. Jackson, 'Conception and the Irrelevance of the Welfare Principle' (2002) MLR 65(2) 176.
36. In January 2005, the HFEA launched a consultation document on this issue ('Welfare of the Child - Tomorrow's Children'). In November 2005, it issued a report ('Tomorrow's Children - Report of the Policy Review of Welfare of the Child Assessments in Licensed Assisted Conception Clinics') and new guidance ('Welfare of the Child and Assessment of those Seeking Treatment').
37. HFEA, Code of Practice - Sixth Edition, above n 3, under the heading 'Clinical Decision Making', preceding para 14.20.
38. E. Jackson notes the uncertainty in relation to s 13(5) and the transfer of embryos in Regulating Reproduction (Oxford: Hart Publishing, 2001) 245.
39. In the Court of Appeal in the Quintavalle case, above n 2, Mance LJ held that the 'requirement...must not only apply before, but continue throughout the administration of treatment services'. (At para 122.) 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.
40. Above n 2.
41. HFEA and AGCT, above n 4, para 27.
42. HFEA and HGC, above n 5, para 25.
43. Ibid, Rec 11.
44. J. Harris, 'Rights and Reproductive Choice' in J. Harris and S. Holm (eds), The Future of Human Reproduction: Ethics, Choice and Regulation (Oxford: OUP, 1998) 5, 32-3.
45. Ibid at 33.
46. Ibid.
47. For an elegant discussion of the possible views, see, e.g. J. Feinberg, 'Abortion' (1979) in his Freedom and Fulfillment (Princeton: Princeton University Press, 1992) 37.
48. I have discussed this issue in detail in Scott, above n 10, ch 1.
49. For an adherent, see J. Finnis 'The Rights and Wrongs of Abortion: A Reply to Judith Thomson' 2 Phil & Pub Aff (1973) 117.
50. Since even the late-gestation fetus lacks the characteristics underpinning the criteria for moral personhood. On fetuses, moral personhood and rights, see M.A. Warren 'On the Moral and Legal Status of Abortion' 57(1) The Monist (1973) 43.
51. For a philosopher supporting the link between interests and sentience, see B. Steinbock, Life Before Birth (New York: OUP, 1992) 24, n 24.
52. On the notion of interests, see J. Feinberg, Harm to Others (New York: OUP, 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'.
53. Scott, above n 10, ch 1.
54. On this point, see, e.g. the discussion of gradualist accounts of fetal status in ibid.
55. See Re MB (Cesarean Section)[1997] 8 Med LR 217 amongst other cases. On the relationship between a gradualist approach to the embryo or fetus and public policy, see below n 40.
56. F. Flinter, above n 13, 1008.
57. HGC, Minutes of Genetic Testing Sub-group, 12 January 2001, per Dr Albert, para 5.4. See also HGC, Minutes of Genetic Testing Sub-group, 16 February 2001, para 8.2: 'Dr Albert...felt that there was a eugenic danger to this procedure with future technological developments such as gene chips, and it was important to state clearly that PGD should be used for specific testing and not screening. Dr Draper felt that what the Sub-group was trying to do was to pick a line between allowing PGD for anything people requested and not allowing it at all, and which would reflect concerns raised in many of the consultation responses.'
58. J. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (Princeton, N.J.: Princeton University Press, 1994) 156:
59. '[B]ecause the embryo is so rudimentary in development, selection for less serious reasons should be less objectionable than screening of fetuses for those same reasons'. See also his 'Genetic Selection of Offspring Characteristics' (1996) 76 Boston U Law Rev 421, 450.
60. Warnock Report (Cmnd 9314), Report of the Committee of Inquiry into Fertilisation and Embryology, republished as A Question of Life (Oxford: Blackwell, 1985).
61. The House of Commons Science and Technology Committee's report Human Reproductive Technologies and the Law (2005), observes in Rec 2 (in part), para 46: 'We accept that in a society that is both multi-faith and largely secular, there is never going to be consensus on the level of protection accorded to the embryo or the role of the state in reproductive decision-making....We believe, however, that to be effective this Committee's conclusions should seek consensus, as far as it is possible to achieve. Given the rate of scientific change and the ethical dilemmas involved, we conclude, therefore, that we should adopt an approach consistent with the gradualist approach, of which the Warnock Committee is one important example.'
62. HFEA and HGC, above n 5, para 25.
63. See also HGC, Response to the Human Fertilisation and Embryology Authority on the Consultation on Preimplantation Genetic Diagnosis, para 7. Noting the current limitations in the number of tests which can be performed, the HGC observes that this 'itself seems to be the best protection against its misuse' but that, should the number of possible simultaneous tests increase, 'these guidelines will have to be revisited as a matter of urgency'.
64. For discussion of this fear, see HGC, Minutes of Plenary Meeting, 2 March 2001. Para 4.7 refers to 'concerns about "designer babies"'.
65. The theme of 'trivial use' in the responses is noted in HGC, Minutes of Genetic Testing Sub-group, 16 February 2001, para 8.5.
66. The idea of 'designer babies' and 'social uses' is also noted in HGC, Minutes of Plenary Meeting, 2 March 2001, paras 4.6 and 4.7.
67. HFEA and AGCT, above n 4, para 26.
68. He continued as regards the facts in that case: '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'.
69. Above n 2, para 134.
70. 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. More generally, 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 this case. 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. Further, as has been noted, the key recommendations from the Outcome Document are repeated in the HFEA's Code of Practice-Sixth Edition, above n 3 (and also in the HFEA's document Guidance on Preimplantation Testing, sent to clinics on 15 May 2003).
71. The example of sterilization is discussed in D. Kevles, 'Eugenics and Human Rights' (1999) 319 BMJ 435, 436-7.
72. See, e.g. J. Glover, 'Eugenics: Some Lessons from the Nazi Experience' in Harris and Holm (eds), above n 26, 55, 64, discussing the Nazis.
73. D. Kevles, above n 45, 435.
74. Ibid.
75. J. Gillott, 'Screening for Disability: A Eugenic Pursuit?' (2001) 27 JME supp II, 21, 21.
76. For a thoughtful review of the alleged wrongs of eugenics, see D. Wikler, 'Can we Learn from Eugenics?' (1999) 25 JME 183. Wikler argues, in part, that a concern with the wellbeing of the group, rather than the individual, and with the costs to the group of the birth of any one individual was a fault of the early eugenics movements (e.g. at 191, 192-3). Yet he also suggests: 'Done justly, the genetic wellbeing of the "group" is a proper object of concern. The question of moral importance is not whether this constitutes eugenics; it is whether it can be done fairly and justly. It wasn't, the last time it was tried'. (At 193.)
77. Above n 48, 21, referring to the work of P. Kitcher, The Lives to Come: the Genetic Revolution and Human Possibilities (London: Allen Lane, The Penguin Press, 1996).
78. For pessimism as to the possibilities of such testing, see E. Kirk, 'Embryo Selection for Complex Traits is Impracticable' (2003) 326 BMJ 53
79. for optimism, see W. Henn, 'Consumerism in Prenatal Diagnosis: A Challenge for Ethical Guidelines' (2000) 26 JME 444, 445.
80. The HGC is clearly keen to emphasize that this kind of selection will not be possible. See HGC, Minutes of the Working Group on Genetics and Reproductive Decision Making, 6 April 2005, para 3.11, with reference to the preparation of its report on genetics and reproductive decision making:
81. 'The Chair asked that the chapter highlight that some of the fears about PGD are ill founded, for example it will not be possible to select for high intelligence or beauty because of the polygenetic nature of these traits'. This report, part of which discusses PGD, was published just as this article goes to press (HGC, Making Babies: Reproductive Decisions and Genetic Technologies, January 2006) and draws, in part, on the Final Report prepared for the HGC, Choosing the Future: Genetics and Reproductive Decision-Making - Analysis of Responses to the Consultation, May 2005. The HGC consultation itself, entitled Choosing the Future: Genetics and Reproductive Decision-Making, took place in 2004.
82. See, e.g. Buchanan et al, above n 10
83. Robertson, above n 38 (both works)
84. B. Steinbock, 'Disability, Prenatal Testing and Selective Abortion' in E. Parens and A. Asch (eds), Prenatal Testing and Disability Rights (Washington, DC: Georgetown University Press, 2000) 108
85. J. Botkin, 'Line Drawing: Developing Professional Standards for Prenatal Diagnostic Services' in E. Parens and A. Asch (eds), Prenatal Testing and Disability Rights, 288 and his 'Fetal Privacy and Confidentiality' (1995) 25(5) Hastings Center Report 32.
86. See, e.g. T. Shakespeare, 'Choices and Rights: Eugenics, Genetics and Disability Equality' (1998) 13/5 Disability and Society 665, 672.
87. J. Glover, Causing Death and Saving Lives (Harmondsworth: Penguin, 1977) 146.
88. On the link between interests and sentience, see B. Steinbock, above n 32.
89. For recognition of this difficulty in this context see, e.g. HGC, above n 41, para 6
90. 'It has proved impossible to define what "serious" should mean in this context. We have listed some factors that should be taken into account when considering seriousness, but perhaps the most important is that this technique should not be used for the purposes of trait selection or in a manner which could give rise to eugenic outcomes.' The HFEA's and AGCT's Consultation Document, above n 4, para 31, observes: '[I]ndividual judgments on seriousness will vary depending on personal and family circumstances and on the nature and severity of the condition and the likelihood of transmission'.
91. R. Scott, 'Prenatal Screening, Autonomy and Reasons: The Relationship between the Law of Abortion and Wrongful Birth' (2003) Med L Rev 265.
92. Similar views can be found elsewhere: See, e.g. T. Murray, The Worth of a Child (Berkeley: University of California Press, 1996) 138.
93. For interesting work on the views of people with conditions such as cystic fibrosis, Down's syndrome and spina bifida, both on their lives and on screening practices, see P. Alderson, 'Prenatal Counselling and Images of Disability' in D. Dickenson (ed.), Ethical Issues in Maternal-Fetal Medicine (Cambridge: Cambridge University Press, 2002) 195.
94. Note, however, that the HFEA's and AGCT's Consultation Document, above n 4, para 33, observes that 'many disorders vary in the severity with which they present. Cystic fibrosis can contribute to death within a few days of birth, but some individuals may survive into their thirties and beyond'.
95. I do not have the scope here to discuss testing for diseases or disorders which begin after birth. On 1 November 2004, the HFEA issued a press release entitled 'HFEA Licences PGD for Inherited Colon Cancer', which stated in 0 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'. On 11 August 2005 the HFEA announced that it would seek the public's views on the use of lower penetrance conditions, such as breast cancer. HFEA Press Release, 'Should Embryo Screening Help Parents Prevent Passing on a Wider Range of Inheritable Diseases?'. For HGC discussions on point, see HGC, Minutes of the Working Group on Genetics and Reproductive Decision Making, 10 December 2004, para 5.3:
96. 'Dr Flinter suggested that it seemed logical when first setting up PGD to consider making it available for conditions for which the availability and acceptability of PND were already established. More recently it was becoming apparent that patients will sometimes consider PGD for conditions for which they would not consider PND, particularly late onset disorders. This is because they would not want to consider termination of pregnancy for a late onset disorder, but would prefer to avoid having an affected baby.' I also do not have the scope to discuss carrier embryos or the question of implanting 'affected' (for instance, deaf) embryos. Some reference is made to the issue of screening out carrier embryos in the Court of Appeal judgments in the Quintavalle decision, above n 2. See, e.g. Mance LJ at para 126.
97. D. Parfit, Reasons and Persons (Oxford: OUP, 1984) ch 16.
98. That is to say, in line with Parfit's arguments in ibid.
99. 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 (Mountain View, Calif.: Mayfield, 5th edn, 1999) 397.
100. Reprinted from (1995) 9 (3/4) Bioethics 289.
101. Brock employs a same number, rather than a same person, analysis to show that in 'wrongful handicap' (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). In response, however, it may be objected that one cannot wrong a class without wronging an individual. (I am grateful to Roger Crisp here.) For further discussion, see Buchanan et al, above n 10 at 242-55.
102. The distinction between central and peripheral features has also been observed in relation to reproductive autonomy by John Robertson: 'The objective materiality of some traits to reproductive decisions will attenuate as we move from genes for severe genetic disease to susceptibility genes to genes for hair and eye colour, and from negative to positive methods of selection...at some point the divergence from what most people view as central to reproductive meaning will diminish the perceived importance of the reproductive interest at stake, and indicate that selection on that basis should not be part of procreative liberty...Drawing the line between protected and unprotected traits and methods is likely to be difficult'. Note that his concern at this juncture is with procreative liberty generally. J. Robertson, above n 38 (1996), 431.
103. He suggests, somewhat speculatively, that US courts might seek to protect less material interests on the basis of another right, such as the right to 'family autonomy in raising offspring'. Ibid n 12, citing Wisconsin v Yoder, 406 US 205 (1972) (in which Amish parents were permitted to control the 'religious future' and education of their children). He goes on to discuss the idea of a subjective preference which may be too far removed from reproductive meaning.
104. I am grateful to Bobbie Farsides here.
105. I am grateful to Roger Crisp here.
106. A. Caplan and G. McGee, 'What is Immoral about Eugenics?' (1999) 319 BMJ 1284, 1285.
107. The case of achrondaplasia may or may not raise different considerations: It is at one end of the spectrum of height.
108. Buchanan et al, above n 10 at 216.
109. O. O'Neill, Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002) 61. See generally her ch 3. It does not appear 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.
110. J. Robertson, 'Extending Preimplantation Genetic Diagnosis: Medical and Non-medical Uses' (2003) 29 JME 213, 215. It is not clear how this view
111. Ibid.
112. J. Botkin, 'Ethical Issues and Practical Problems in Preimplantation Genetic Diagnosis' (1998) 26 JL Med and Ethics 17, 24, suggests that despite the speculative nature of concerns over the parent-child relationship arising from choices made in PGD, 'the fundamental importance of the parent-child relationship suggests that a burden of justification must rest with parents or professionals who would use PGD for the selection of offspring for characteristics other than significant health conditions. Parental desires to use technology in the fine-grained selection of children must be justified through claims of legitimate interest'.
113. G. McGee, 'Parenting in an Era of Genetics' (1997) 27(2) Hastings CR 16, 18, writes about the idea of 'systematic choices' and parental expectations.
114. R. Hursthouse, 'Virtue Theory and Abortion' in R. Crisp and M. Slote (eds), Virtue Ethics (Oxford: OUP, 1997) 217.
115. Reprinted from (1991) 20 Phil & Pub Aff 223.
116. Ibid, 231.
117. J. Feinberg, 'The Child's Right to an Open Future' in W. Aiken and H. LaFollette (eds), Whose Child? Children's Rights, Parental Authority and State Power (Totowa, NJ: Rowman and Littlefield, 1980).
118. D. Davis, 'Genetic Dilemmas and the Child's Right to an Open Future' (1997) 27(2) Hastings CR 7, 12.
119. Buchanan et al, above n 10 at 170.
120. For discussion see R. Scott, 'Prenatal Testing, Reproductive Autonomy and Disability Interests' (2005) 14/1 Cambridge Quarterly of Healthcare Ethics 65.
121. For discussion of the self-defeating aspects of these choices, see Buchanan et al, above n 10, 186.
122. I am grateful to Roger Crisp here.
123. D. Brock discusses non-person affecting principles in n 62, above.
124. For the contrasting view that only personaffecting principles count, see D. Heyd, Genethics: Moral Issues in the Creation of People (Berkeley: University of California Press, 1992) 170-7.
125. I do not see how else the idea of having a duty beneficently to select for such a feature might be understood. For discussion of a duty to select the embryo with the most advantageous features and characteristics, see J. Savulescu, 'Procreative Beneficence: Why We Should Select the Best Children' (2001) 15(5/6) Bioethics 413, 418. Savulescu employs a non-person-affecting analysis.
126. For thoughts on society's moral priorities see Buchanan et al, above n 10 at 202, who suggest that although what they term the 'treatment/ enhancement' distinction does not map onto a distinction between what is morally required and what is morally permissible, 'the boundary between treatment and enhancement offers a plausible, publicly usable boundary for saying what society's primary obligations are in the delivery of health care'.
127. On the idea that the implications for resources may give some right to society, see D. Heyd, 'Prenatal Diagnosis: Whose Right?' (1995) 21 JME 292, 295. Heyd adopts a person-affecting approach and argues that 'we should...negotiate carefully between the rights of the parents and those of society'.
128. For thoughts on funding, PGD and the NHS, see Department of Health, 'Preimplantation Genetic Diagnosis (PGD) - Guiding Principles for Commissioners of N.H.S. Services' (September 2002) at http:// www.dh.gov.uk/assetRoot/04/11/89/35/04118935.pdf.
129. As noted by, e.g. L. Silver, 'How Reprogenetics will Transform the American Family' (1999) 27 Hofstra L Rev 649, 657.
130. As noted ibid, Silver, writing about the US context, believes with some apprehension that power in relation to these issues lies in the 'marketplace'. Ibid at 658. Buchanan et al, above n 10 at 202, suggests that there is 'no reason to object in general to using genetic influences any more than environmental ones in the pursuit of... advantages' but that 'some efforts to pursue advantage (whether genetic or environmentally influenced) may reasonably be restricted' either because they 'are self-defeating and pose threats to public goods' or because they raise 'objections of fairness' (or in cases of genetic manipulation, which is not under consideration here, because of inherent risks).
131. On the fears that prenatal screening (and by implication PGD) might constitute discrimination against people with disabilities, see, e.g. M. Saxton, 'Why Members of the Disability Community Oppose Prenatal Diagnosis and Selective Abortion' in E. Parens and A. Asch (eds), above n 52, 147, 151, who suggests that discrimination issues affecting people with 'chronic diseases or disability' are overlooked in discussions about medical decision making (at 154). She also suggests that it is hard 'to assess the true impact of disability on the individual's life experience' due to the impact of 'oppressive social conditions' on the public's perceptions, which people with disabilities may have 'internalize[d]' (at 150).
132. For more detailed thoughts of mine on this issue, see Scott, above n 77.
133. HFEA and HGC, above n 5, para 22: 'PGD guidance should support difficult parental choices rather than appearing to discriminate against individuals with certain conditions'.
134. HGC, Minutes of Genetic Testing Sub-group, 12 January 2001, para 5.7
135. 'Dr Draper felt that to reflect the views expressed in the consultation responses any guidance should make clear that PGD should not be used in a way that leads to systematic discrimination.' See also HGC, Minutes of Plenary Meeting, 2 March 2001, para 4.7. Although support for PGD had been expressed through the consultation exercise, there were 'concerns about "designer babies" and about the technology not being used to discriminate further against disabled people now or in the future'.
136. A. Asch, 'Can Aborting "Imperfect" Children be Immoral?' from A. Asch, 'Real Moral Dilemmas' Christianity and Crisis, 46(10) 237.
137. Reprinted in J. Arras and B. Steinbock, Ethical Issues in Modern Medicine (5th edn) 384, 387.
138. Buchanan et al, above n 10 at 280.
139. Ibid.
140. As argued, ibid at 277.
141. This will legitimately be stronger in the case of selective abortion.
142. For consideration of this point see Scott, above n 77.
143. C. Williams, P. Alderson and B. Farsides, 'Too Many Choices? Hospital and Community Staff Reflect on the Future of Prenatal Screening' (2002) 55 Social Science & Medicine 743, 748, note the comments of a psychologist: 'If there is a society in which one can make an individual informed choice that you don't want to have a baby with a minor abnormality, then over a period of years we will see less and less babies with abnormalities born on the whole...then the social pressure on those who are disabled will rise and rise, and the stigma that will be attached to them will be even greater'. These authors later observe: 'Serious concerns were expressed during the groups about what the eventual impact of individual consumer choice might be for wider society, including increased stigma for the disabled' (at 750).
144. F. Flinter, above n 13, 1009, suggests that '[t]he virtually unregulated provision of preimplantation diagnosis in other countries, where sex selection for "family balancing" and HLA typing is performed, risks bringing the whole technique into disrepute'.
145. See, e.g. J. Robertson, above n 38 (1996), 451-2.
146. For discussion of related issues within the US abortion context, see Planned Parenthood of Southeastern Pennsylvania v Casey, 120 L Ed 2d 674 (1992). In reviewing the idea of a framework in which third parties, such as the State, or family members in the case of minors, may themselves 'express profound respect for the life of the unborn' (at 715) both Blackmun and Stevens JJ were keenly aware of the need to distinguish neutral medical information legitimately related to health on the one hand and information concerned with moral consequences, coupled with the question of persuasion in relation thereto, on the other.
147. Buchanan et al, above n 10 at 218.
148. Department of Health, Review of the Human Fertilisation and Embryology Act: A Public Consultation, August 2005.
149. House of Commons Science and Technology Committee, above n 40, Rec 27 (in part), para 124.
150. In its response, above n 6, the government rejects the Committee's criticisms of the HFEA's original consultation on PGD and the HFEA's discussions with the HGC which resulted in the joint recommendations in the Outcome Document. However, the government observes, at para 44
151. '[W]e agree with the Committee that it would be preferable if the parameters for PGD were more clearly set out in law. The Government will therefore seek wider public views on the boundaries of acceptable uses of preimplantation genetic diagnosis and preimplantation tissue typing, and on the appropriate scope and nature of regulatory intervention'. In its consultation document, above n 100, the government observes, at para 5.15
152. 'It may be argued...that it should be a matter for legislation to set out more specifically the circumstances in which techniques such as PGD can be used. For example, a distinction could be drawn in law between medical and non-medical interventions, or the law might be framed to allow embryo screening and selection to avoid serious disorders only.' See further paras 5.11-5.23. The results of this consultation exercise will likely be available in 2006.
153. G. White and M. McClure, 'Introducing Innovation into Practice: Technical and Ethical Analyses of PGD and ICSI Technologies' (1998) 26 JL Med and Ethics 5, 5
154. 'Scientific concerns about PGD center on possible harm to the early embryo resulting from the extraction of a single cell'. According to Stuart Lavery, Sub-specialist in Reproductive Medicine, the Hammersmith Hospital, London, the initial data on safety are 'reassuring', although continuing surveillance is needed. Talk, 'PGD and the "Welfare of the Child"' at 'Moral Dilemmas in Reproductive Medicine', British Fertility Society VIIth Ethics Study Day, RCOG, 27 February 2004.
155. Suzi Leather, Debate, 'Saviour Siblings', Progress Education Trust, 16 October 2003. This consideration was previously at stake in the issue of tissue-typing. In the Court of Appeal decision in the Quintavalle case, above n 2, para 132, Mance LJ observed that 'the HFEA, exercising its judgment, considered that the invasive procedure of a biopsy should only be undertaken on an embryo if it was necessary in the first instance from the point of view of the embryo, in other words to confirm the embryo's genetic normality. If a biopsy was necessary in any event on that ground, then there was no objection to allowing it for the further purpose of tissue testing'.
156. For the HFEA's current views, see above n 2.
157. Of course, this was central to the HFEA's prior policy of allowing HLA tissue-typing only if the embryo is itself at risk of a serious genetic disorder, as in the Quintavalle case, above n 2.
158. Y. Verlinsky, J. Cohen, S. Munne, L. Gianaroli, J.L. Simpson, A.P. Ferraretti and A. Kuliev, 'Over a Decade of Experience with Preimplantation Genetic Diagnosis: A Multicenter Report' (2004) 82/2 Fertility and Sterility 292.
159. But recall that PGD is not itself 100% accurate. On attitudes to PGD and selective abortion, see HGC, Minutes of the Working Group on Genetics and Reproductive Decision Making, 2 March 2005, para 4.16: 'Dr Patch said that most couples using PGD do so because they see it as a better option than abortion.' This was in the context of a discussion about access to PGD.
160. For related thoughts, see the House of Commons Science and Technology Committee, above n 40, Rec 26 (in part), para 119: '[O]ur gradualist approach to the status of the embryo leads us to conclude that there is a mismatch between the protection afforded an embryo created in vitro before it is implanted and one at a later stage of development in the woman's uterus'. This statement occurs in the context of a discussion of sex selection, which is beyond my current scope.
161. For relevant thoughts, see HGC, Choosing the Future: Genetics and Reproductive Decision-Making - Analysis of Responses to the Consultation, above n 51, para 4.5, entitled 'The Economic Cost of PGD': 'There seems to be some consensus that, at this stage of development in the technology, NHS-funded testing should be limited by a set of strict criteria; these may include the severity of the disorder, the risk of an affected pregnancy (for example, whether the patient has a family history of a genetic disorder) and the efficacy of the test.'
162. HFEA and HGC, above n 5, para 32: 'The nature of the decision to pursue treatment involving PGD...meant that a central role in the judgement about the significance of the risk and the seriousness of the condition should be given to the people seeking treatment.' Note also the emphasis, in para 21, on the 'crucial importance of the views and experiences of those seeking treatment in decision-making'.
163. HGC, Minutes of Genetic Testing Sub-group, 12 January 2001, para 5.4: 'Dr Albert felt that there was a real risk in the future that, with PGD becoming available for more people...it could be used for selecting babies.' The concern here is presumably with selection on the basis of insignificant features. In outlining the respective scope of selective abortion and PGD, the Consultation Document notes that 'some may fear it will be too easy to test and discard [embryos] where no serious disorder exists'. However, the Document also notes that since PGD necessitates IVF it is by no means an 'easy option' and therefore will not be 'undertaken lightly or offer any guarantee of success'. HFEA and AGCT, above n 4, para 26.
164. For recognition of the significance of parental interests in selective abortion, 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 Law Rev 85, 99-106.