"Hearing" or "Deaf" ? Discussing epistemological and methodological issues related to the bioethical discourse on paediatric cochlear implantation - KERMIT (Patrick)
Scandinavian journal of disability research, 12, 2, 2010, pp. 91-107
Perhaps the most dominating question in the bioethical discourse on paediatric cochlear implantation is that of whether or not a prelingual deaf child should undergo surgery. This paper argues that other, possibly more important questions can be posed if the bioethical discourse is based on a better empirical understanding of what cochlear implantation might mean for a prelingual deaf child. Many contributors for and against paediatric cochlear implantation base their arguments on the theoretical premise that choosing whether or not to implant is effectively the same as choosing between having a hearing and speaking child or a (culturally) Deaf and signing child. This notion is rejected analytically as oversimplified. Methodologically it is paramount to distinguish between hearing ability, the ability to pick up and utter words or sentences and the ability to use language to successfully interact with others. The text argues that more epistemological weight should be placed on the latter. Unfortunately, it is not only the greater part of the bioethical discourse that fails to do this, much of the clinically conducted outcome research does the same. To make the proposed distinction, it is necessary to reflect over the methodological requirements empirical investigations should meet. A pilot study modelled according to these suggested requirements is presented and discussed. The foregrounding of communicative practises in this pilot study highlighted several bioethical aspects of cochlear implantation. These aspects are connected to questions of identity formation and adult expectations in relation to the technology. The paper suggests that these new questions should be adopted in the ongoing bioethical discussion and recommends further research in order to reach a better assessment of practices related to cochlear implantation.
Implants and ethnocide : learning from the cochlear implant controversy
Disability & Society
Volume 25, Issue 4, 2010, Pages 455 - 466
This paper uses the fictional case of the ’Babel fish’ to explore and illustrate the issues involved in the controversy about the use of cochlear implants in prelinguistically deaf children. Analysis of this controversy suggests that the development of genetic tests for deafness poses a serious threat to the continued flourishing of Deaf culture. I argue that the relationships between Deaf and hearing cultures that are revealed and constructed in debates about genetic testing are themselves deserving of ethical evaluation. Making good policy about genetic testing for deafness will require addressing questions in political philosophy and anthropology about the value of culture and also thinking hard about what sorts of experiences and achievements make a human life worthwhile.
Interactive technology assessment of paediatric cochlear implantation
Poiesis & Praxis : International Journal of Technology Assessment and Ethics of Science
Volume 2, Numbers 2-3, 119-137, DOI : 10.1007/s10202-003-0052-3
Lrsquoévaluation technologique interactive est une nouvelle approche pour évaluer les technologies (médicales), qui tire son origine des travaux de Rawls et Habermas. Cela signifie qursquoelle tente de drsquoorganiser une configuration pratique pour lrsquoéthique discursive, afin de trouver une base légitime aux politiques à suivre lorsque la technologie examinée fait lrsquoobjet drsquoune controverse morale. Lrsquoévaluation technologique interactive implique un cycle de sondages auprès de tous les groupes concernés, auxquels il est explicitement demandé de srsquoexprimer (anonymement) sur les préoccupations et les questions soulevées par drsquoautres participants. Ce cycle est répété à plusieurs reprises, de sorte qursquoun processus drsquoapprentissage indirect se développe. Cette démarche vise à identifier les points suscitant lrsquoaccord ou le désaccord, sur la base desquels des recommandations politiques approuvées par une large majorité peuvent être formulées. Ce chapitre porte sur lrsquoévaluation technologique interactive dans le cas des implants cochléaires en pédiatrie. Il présente le raisonnement, la conception et les résultats de la démarche de même que ses principaux aspects éthiques.
Grodin, Michael A.
Lane, Harlan L.
Ethical Issues in Cochlear Implant Surgery : An Exploration into Disease, Disability, and the Best Interests of the Child
Kennedy Institute of Ethics Journal - Volume 7, Number 3, September 1997, pp. 231-251
This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEA children. We explore whether that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEA are explored, as are ethical quandaries in parental surrogacy for DEA children, and their parallels in transracial adoption.
Reconsidering Cochlear Implants : The Lessons of Martha’s Vineyard
Volume 16, Issue 2, pages 134-153, April 2002
I distinguish and assess three separate arguments utilized by the opponents of cochlear implants : that treating deafness as a medical condition is inappropriate since it is not a disability ; that so treating it sends a message to the Deaf that they are of lesser worth ; and that the use of such implants would signal the end of Deaf culture. I give some qualified support to the first and second claim, but find that the principal weight of the argument must be borne by the third argument : that use of the cochlear implants is impermissible because Deaf culture is intrinsically valuable. I show that this claim is, in practice, incompatible with the claim that deafness is not a disability : that the significant disadvantages suffered by the hearing impaired can only be corrected by measures that would end Deaf culture. Since the potential recipients of cochlear implants are, in the main, the prelingually deaf children of hearing parents, the burden of banning the implants would be borne by people who are not members of Deaf culture, and who owe that culture nothing over and above what we all owe cultures in general. I conclude that we cannot ask the parents of these children to sacrifice the interests of their children for the sake of Deaf culture.
Defending Deaf Culture : The Case of Cochlear Implants
Journal of Political Philosophy Volume 13, Issue 2, pages 135-152, June 2005
Cochlear Implants and the Claims of Culture ? A Response to Lane and Grodin
Davis, Dena S.
Kennedy Institute of Ethics Journal - Volume 7, Number 3, September 1997, pp. 253-258
Because I reject the notion that physical characteristics constitute cultural membership, I argue that, even if the claim were persuasive that deafness is a culture rather than a disability, there is no reason to fault hearing parents who choose cochlear implants for their deaf children.