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Law and regulation of retained organs: the ethical issues

  • John Harris (a1)

Abstract

Organ retention has been with us for millennia. Walk into virtually any cathedral and many a church in Europe and you will find an array of retained organs or tissue, allegedly originally the property of assorted saints, or even of God, and almost certainly collected without proper informed consent and retained in less than secure conditions. In our own time the complexities of organ collection, retention and use have proliferated. The events at Alder Hey Children's Hospital and the debates about the ethics of biobanking all over the world have dramatically highlighted the complexity, the difficulty and the moral importance of these issues. Some of these issues have to do with the question of who can give permission for or consent to such removal and retention. Other issues involve consideration of whose rights or interests are engaged when cadaver organs and tissue are removed and retained, just what in particular is the nature, extent and force of those rights or interests, and how they are to be balanced against other moral considerations. These questions are the subject of this paper. We will not, however, here be concerned with the issues of genetic privacy, the security of genetic information.

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* I am indebted to my colleagues Neil Duxbury, Charles Erin and Søren Holm for their incisive comments on an earlier draft of this paper.

1. Although collection, retention and use can raise separate issues, I will use the term ‘organ retention’ to cover all three processes unless otherwise indicated.

2. For some of this debate, see D Kom MD Contribution of the human tissue archive to the advancement of medical knowledge and public health Report to the National Bioethics Advisory Commission (1998) and Health Science Information Bunks – Biobanks Report the Danish Council of Ethics, Copenhagen (1996). See Protocol for the UK Biobunk sponsored by The Welcome Trust, Medical Research Council and the Department of Health (2002).

3. The Royal Liverpool Children's Inquiry Report (the Redfern Report) (London: The Stationary Office, 2001) p 445. See also the Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–95 Learning from Bristol (Cm 5207(1), 2001).

4. See, for example. Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402; and F v West Berkshire Health Authority [1989] 2 All ER 545.

5. In this section I have drawn on my papers ‘Consent and end of life decisions’ in (2002) J Med Ethics (forthcoming) and ‘The concept of the Person and the value of life’ (1999) 9(4) Kennedy Institute of Ethics J 293.

6. This paper draws on my thoughts first published in a number of places, including: ‘Life and Death’ in E Craig (ed) the new Routledge Encyclopaedia of Philosophy (London: Routledge, 1998); and in my ‘Euthanasia and the Value of Life’ and other essays by myself and John Finnis on euthanasia in J Keown (ed) Euthanasia Examined: Ethical Clinical and Legal Perspectives (Cambridge: Cambridge University Press, 1995) pp 6–71. The concept of autonomy used and defended here differs markedly from that often associated with Kantian philosophy. For an excellent elaboration and defence of a Kantian conception of autonomy, see O O'Neill Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002).

7. Retained Organs Commission ‘A Consultation Document’ (London: Department of Health, 2002).

8. Retained Organs Commission, n 7 above, p 7, para 16.

9. Retained Organs Commission, n 7 above, p 28, para 64.

10. For an account of the ways in which the law has attempted to deal with necrophilia, see D S Cook and D S James ‘Necrophilia: case report and consideration of legal aspects’ in (2002) 5 Med L Int 199.

11. Cook and James, n 10 above.

12. There is some legal support for this: see People v Kelly and People v Sellars California Supreme Court cited in Cook and James, n 10 above at p 202.

13. A locus classicus is Cohen, G A Self-ownership, Freedom, And Equality (Cambridge: Cambridge University Press, 1995) p 68 (this originally appeared in Cohen's ‘Self-ownership, world-ownership, and equality’ in Lucash, F (ed) Justice And Equality Here And Now (Ithaca, NY: Cornell University Press, 1986) p 109 ). See also Steiner, H An Essay on Rights (Oxford: Blackwell, 1994).

14. See R v Kelly [1998] 3 All ER 741, CA. Ownership of bodies or body parts which results from ‘the exercise of work or skill’ is, however, subject interestingly also to the entitlement to possession for the purposes of burial.

15. Catherine Yates drew my attention to Andrew Grubb’ s comments in I Kennedy and A Grubb Medical Law (London: Buttenvorths, 2000) pp 2246–2247.

16. I am indebted to Margot Brazier for this point.

17. On rights theories generally, see Sumner, L W The Moral Foundation Of Rights (Oxford Clarendon Press, 1987); Waldron, J The Right to Private Property (Oxford Clarendon Press, 1988) ch 3; Steiner, n 13 above; Dworkin, R Taking Rights Seriously (London: Duckworth, 1977) and Life's Dominion (London: Harper Collins, 1993) pp 210–216.

18. See Raz, J The Morality of Freedom (Oxford: Clarendon Press, 1986) p 166 . A related conception in terms of welfare rather than well-being is offered by Sumner, n 17 above, p 47.

19. W Shakespeare Julius Caesar Act 111, Scene 11.

20. W Shakespeare Macbeth Act 111, Scene 11.

21. On this distinction, see Feinberg, J Harm to Other (New York: Oxford University Press, 1984) p 102 ; and see Hams, J Wonderwoman and Superman (Oxford Oxford University Press, 1992) p 84ff.

22. See, for example, Dworkin (1993), n 17 above, pp 210–216; and Harris, n 21 above, p looff.

23. S 1(1).

24. Although this is, I must confess, a rankly partisan reading!

25. Harris, n 21 above, pp 100–101.

26. Of course, it might be argued that taxes serve the interests of all because of the uses to which they are put.

27. There is, I believe, here a lesson to be leaned for the case of cadaver organ donation, which I have raised in The Value of Life (London: Routledge and Kegan Paul 1985) pp 219–223.

28. On this point see my ‘Ethical genetic research’ in (1999) 40 Jurimetrics: The Journal of Law, Science, and Policy 1 at 77.

29. A related argument in the context of personal identity has been employed by Allen Buchanan: see his ‘Advance Directives and the Personal Identity Problem’ in Hanis, J (ed) Bioethics (oxford: Oxford University Press, 2001) pp 131–157 ; and also Dworkin (1993), n 17 above, p 180ff.

30. Airedale NHS Trust v BZund [1993] 1 All ER 821 at 894, HL.

31. Dworkin (1993), n 17 above, p 201ff.

32. Derek Parfit, following Jan Narveson, defines the person affecting restriction thus: ‘This part of morality, the part concerned with human well-being, should be explained entirely in terms of what would be good or bad for those people whom our acts affect’. See Parfit, D Reasons and Persons (Oxford: Clarendon Press, 1984) p 394 .

33. See Dworkin (1977), n 17 above, p 234ff.

34. Dworkin's interests in his discussion of this distinction are rather far from ours, and a full discussion would take us too deeply into the theory of equality.

35. Harris, n 21 above, ch 5, pp 10–101.

36. While the life of a person then is affected by frustration of interests, the dead are not affected ‘in person’ by this. Note that it is not a question of experiential versus critical interests, but person affecting versus persisting interests. Person affecting considerations affect living persons whether or not they experience them in the sense of being aware of them. I am affected in person, for example, by malicious gossip; it is person-affecting even if I remain unaware of it.

37. Dworkin (1977), n 17 above.

38. See, for example, my ‘The Welfare of the Child’ in (2000) 8(1) Health Care Analysis 1–8; and Harris, n 5 above.

39. Retained Organs Commission, n 7 above, p 7, para 16.

40. Redfern Report, n 3 above, p 445.

41. Korn, n 2 above.

42. Health Science Information Banks – Biobanks Report of the Danish Council of Ethics, Copenhagen (1996).

43. See Protocol for the UK Biobank, n 2 above.

44. Korn, n 2 above, pp 1–2.

45. Korn, n 2 above, p 41.

46. Korn, n 2 above, p 42 (emphasis in original).

47. Personal communication from oren Holm.

48. Korn, n 2 above, pp 12–13.

49. Support for such claims in the Human Rights Act 1998 are principally found in ss 6(1), 6(3)(a) and arts 8 and 9 of Sch 1 to the Act.

50. Saren Holm pointed this out to me.

51. Retained Organs Commission, n 7 above, p 9.

52. I am here indebted to Ann McLaren for helpful insights.

53. W Shakespeare Hamlet Act V, Scene I.

54. Shakespeare, n 53 above, Act IV, Scene III.

55. Scottish Executive Final Report of the Independent Review on the Retention of Organs at Post Mortem (2001). The Scottish concern about the language of consent is not shared by the Northern Ireland Inquiry: see the Report of the Human Organ Inquiry (2002).

56. See Harris, n 27 above, ch 6 and p 222.

Law and regulation of retained organs: the ethical issues

  • John Harris (a1)

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