Cheap listening? - Reflections on the concept of wrongful disability

Bioethics

Volumn 20, Issue 2, 2006, Pages 55-63

  Hull, Richard J ^a,b  

^a NATIONAL UNIVERSITY OF IRELAND   (Ireland)

^b Centre of Bioethical Research and Analysis (COBRA)   (Ireland)

Author keywords

Avoidability via substitution; Capability; From chance to choice; Non identity problem; Parental responsibility; Wrongful disability; Wrongful life

Indexed keywords

ARTICLE; DISABILITY; HEREDITY; HUMAN; LIFE; MORALITY; PARENT; PREGNANCY TERMINATION; RESPONSIBILITY; SOCIAL ASPECT;

ANALYTICAL APPROACH; GENETICS AND REPRODUCTION; PHILOSOPHICAL APPROACH;

ABORTION, EUGENIC; DISABLED PERSONS; ETHICAL ANALYSIS; FEMALE; GENETIC ENGINEERING; HUMANS; MORAL OBLIGATIONS; PARENTS; PREGNANCY; PRENATAL DIAGNOSIS; PUBLIC POLICY; QUALITY OF LIFE; REPRODUCTION; WRONGFUL LIFE;

EID: 33644911728     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2006.00477.x     Document Type: Article

References (34)

1. This paper won the 2004 Mark S. Ehrenreich Prize for Healthcare Ethics Research, awarded by The Pacific Center for Health Policy and Ethics at the University of Southern California in conjunction with the International Association of Bioethics and presented at the VII World Congress of Bioethics, Sydney, Australia, 9-12 November 2004.
2. R. Hull Defining disability - a philosophical approach Res Publica 1998 IV 2 199 210
3. S. Sheldon S. Wilkinson Termination of pregnancy for reason of foetal disability: are there grounds for a special exception in law Med Law Rev 2001 9 104
4. This is not to deny that the likelihood of social change might be a real issue for prospective parents. However, at the very least we should acknowledge that socio-economic factors are influencing our comprehension of many medical diagnoses and, by implication, the decisions that we make.
5. Given that economical solutions are not necessarily morally preferable ones, I think that the question of whether there might be an economic incentive to adopt genetic initiatives in preference to others is a very important one to ask. This may be especially true where problems have a considerable social component and, by implication, raise issues of social (or indeed global) justice.
6. Whether or not that gives us moral licence to judge the failure to eradicate disability as wrongful is, as I will show, a different issue.
7. A. Buchanan et al. 2000. From Chance to Choice: Genetics and Justice. Cambridge. Cambridge University Press.
8. Ibid. p. 243 (my emphasis).
9. Ibid.
10. Ibid. p. 244.
11. I am setting aside here difficulties to do with the fact that non-existence is no condition at all. I am assuming, along with Buchanan et al., that we can make sense of the judgement that non-existence would be preferable to some types of life even though the very idea of non-existence makes comparisons like 'preferable' problematic. Ibid. pp. 234-5.
12. Ibid. p. 245.
13. Ibid. pp. 245-6.
14. Ibid. p. 246.
15. Ibid. p. 248.
16. Ibid.
17. Ibid. p. 249.
18. P.G. Peters Protecting the Unconceived: Nonexistence, Avoidability, and Reproductive Technology Ariz Law Rev 1989 31 3 487 548
19. Buchanan et al., op. cit. note 7, p. 249.
20. Such cases might include those where the severity of an impairment is difficult to quantify, or where an impairment is not so serious as to make prospective parents definite about not wanting to take responsibility for bringing it about.
21. Ibid. p. 255.
22. This would not hold if 'without affecting the number of persons who will exist' were more loosely defined, for example, in terms of the net amount of flourishing of the social pool. However, it is hard to see how a more loosely defined idea of substitution could ever be shown to be satisfied or not, which would render the idea quite meaningless. Moreover, the 'for whose welfare they are responsible' part of principle N suggests that the problem outlined above does indeed hold, as does Buchanan et al.'s approach where parents are unable to have a non-disabled child 'instead'.
23. Ibid. p. 254.
24. Ibid.
25. J. Woodward The Non-Identity Problem Ethics 1986 96 4 p 823
26. I am not arguing that parental aspirations are beyond criticism. Indeed, while in most cases they are likely to be very closely connected, it is where attitudes of prospective parents can be morally criticised in the light of projected quality of life that we seem to find the motivation for claims that a particular disability is wrongful. At the other end of the scale, we can also find the basis for anti-perfectionist arguments.
27. I state this as but one of many possible expressions of parental aspirations that we can and should take seriously.
28. In emphasizing the legitimacy of 'top down' parental aspirations, I am not denying that some aspirations could be unreasonable and potentially not take something like termination seriously enough. Aspiring too closely to 'everything' could be just as worrying as bringing about little above 'nothing'.
29. For example, substituting disabled twins or triplets in the place of one non-disabled child could be favoured in a straight utility comparison, yet the very idea seems far removed from our moral sensibilities.
30. D. Benatar Why it is better never to come into existence Am Philos Q 1997 34 3 345 355
31. M. Hanser Harming Future People Philos Public Aff 1990 19 1 47 70
32. That consideration may even extend to wrongful life cases.
33. This type of example is discussed in much more detail in Buchanan et al., op. cit. note 7, p. 244 onwards.
34. While I think that the idea of permissible irresponsibility, along with the justification of termination that does not hinge on the idea of substitution, is more philosophically defensible than the idea of wrongful disability, it is also an attempt to strike a more sensitive balance between the profoundly personal nature of reproductive choices and the very serious worries that we can have about some of them.