There is a difference between selecting a deaf embryo and deafening a hearing child

Journal of Medical Ethics

Volumn 30, Issue 5, 2004, Pages 510-512

  Hayry M ^a  

^a UNIVERSITY OF CENTRAL LANCASHIRE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CHILD CARE; CHILD REARING; EMBRYO; GENETIC SELECTION; HEARING; HEARING IMPAIRMENT; HUMAN; MEDICAL DECISION MAKING; MEDICAL ETHICS; MORALITY; PARENTAL BEHAVIOR; PREIMPLANTATION EMBRYO; PRENATAL DIAGNOSIS;

ANALYTICAL APPROACH; GENETICS AND REPRODUCTION;

DEAFNESS; DECISION MAKING; FERTILIZATION IN VITRO; GENETIC ENGINEERING; HUMANS; INFANT, NEWBORN; MORALS;

EID: 6944234913     PISSN: 03066800     EISSN: None     Source Type: Journal    
DOI: 10.1136/jme.2002.001891     Document Type: Article

References (20)

1. See, for example, Spriggs M. Lesbian couple create a child who is deaf like tem. J Med Ethics 2002;28:283.
2. Levy N. Deafness, culture, and choice. J Med Ethics 2002;28:284-5.
3. Anstey KW. Are attempts to have impaired children justifiable? J Med Ethics 2002;28:286-8.
4. Lane H, Grodin M. Ethical issues in cochlear implant surgery: an exploration into disease, disability, and the best interests of the child. Kennedy Inst Ethics J 1997;7:231-51.
5. The expression "deaf embryo" is rather indiscriminately used in the discussion. Deafness in embryos cannot be directly diagnosed. What authors refer to by the expression is the possibility of identifying genetic traits which can contribute to the probability of deafness in the prospective individual. It follows from this that prospective parents cannot" deafen hearing embryos", although the language used in ethical debates sometimes seems to suggest this. If they could, this would, for the purposes of my argument, be equivalent to deafening a hearing infant.
6. Harris J. Is there a coherent social conception of disability? J Med Ethics 2000;26:95-100. Harris writes (p 97): "I do not believe that there is a difference between choosing a preimplantation deaf embryo and refusing a cure to a newborn. Nor do I see an important difference between refusing a cure and deliberately deafening a child.".
7. By the way, I am not sure that the idea of deafening a child would necessarily be outrageous to all deaf parents who want to offer their children the opportunity to join their inherited culture. The idea of physically moulding children, say, by circumcision does not shock parents who believe in the cultural and spiritual value of the operation. I will, however, try to accommodate be more widely shared intuition that there is something wrong with deliberately deafening an infant.
8. This is why "wrongful life" charges against the parents would be groundless. If the individual does not like the only life she could have had, she is free to end it, but the parents cannot be accused of giving her less of a life than they could have done. Compare with, however, Harris J. Clones, genes, and immortality: ethics and the genetic revolution. Oxford: Oxford University Press, 1998:111.
9. Children Act 1989; NHS & Community Care Act 1990; UNICEF Convention on be Rights of the Child 1989. Compare with Harris J. The welfare of the child. Health Care Anal 2000;8:27-34.
10. Davis DS. Genetic dilemmas and the child's right to an open future. Hastings Center Report 1997;27:7-15.
11. See also Takala contra Davis on the "open-future" argument in this context. Takala T. Genes, sense and sensibility: philosophical studies on the ethics of modern biotechnologies. Helsinki: Reprotalo, 2000:107-18.
12. Compare with Chadwick R, Levitt M. Genetic technology: A threat to deafness. Med Health Care Philos 1998;1:209-15.
13. It can be argued that if the child would have "a life not worth living" (whatever this means), it would be wrong to bring her into existence. (Compare with Häyry M. Playing God: essays on bioethics Helsinki: Helsinki University Press, 2001:32-43.)
14. But this is not the case with deafness even according to the authors who use be analogy argument examined in this paper. See, e.g. Harris J. One principle and three fallacies of disability studies. J Med Ethics 2001;27:383-7.
15. Some defenders of the analogy between selecting embryos and deafening a hearing agree with this interim policy conclusion. Harris, for instance, writes:" It... could not be said that I suggest that people should be prohibited or prevented from having children with disabilities.
16. This combination has the advantage of accommodating some intuitions from each side of the argument.
17. United Nations Universal Declaration of Human Rights, 1948.
18. Not everybody agrees with this. Harris writes: "I believe that 'it is ethical to prevent the births of people with disabilities because it is right to prevent needless harm'." (See reference 8: Harris, p 387.)
19. Compare with Häyry M. What the fox would have said, had he been a hedgehog-on the methodology and normative approach of John Harris's Wonderwoman and Superman, In: Launis V, Pietarinen J, Räikkä J, eds. Genes and morality: new essays. Amsterdam and Atlanta: Rodopi, 1999:11-19.
20. When deaf people argue against selecting hearing embryos, they sometimes claim that the practice is prejudicial against them as a group. I suppose hearing people have similar ideas when they attack attempts to select deaf embryos. In both cases, it can be said, they are killing one of us. But as the embryos (or pre-embryos) do not yet exist as people when the choice is made, they are not actually harmed as people, which means that no literal killing in be ethically bad sense occurs. And in a society where people's reproductive autonomy is respected whatever they choose, there is at least no public discrimination against any group. (And private discrimination cannot be argued against, as the private sphere is protected by respect for autonomy.)