The strategy of developing an ontology or models of disability as a prior step to settling ethical issues regarding disabilities is highly problematic for two reasons. First, key definitional aspects of disability are normative and cannot helpfully be made value-neutral. Second, if we accept that the contested concept of disability is value-laden, it is far from obvious that there are definitive reasons for choosing one interpretation of the concept over another. I conclude that the concept of disability is better left (...) ethically open-ended or broad enough to encompass the examination of various ethical issues. Alternatively, the concept of disability could be altogether abandoned in order to focus on specific issues without being hindered by debates about the nature of disability. Only political costs, rather than conceptual considerations internal to the models, could be weighed against such a conclusion. (shrink)

As reproductive genetic technologies advance, families have more options to choose what sort of child they want to have. Using preimplantation genetic diagnosis (PGD), for example, allows parents to evaluate several existing embryos before selecting which to implant via in vitro fertilization (IVF). One of the traits PGD can identify is genetic deafness, and hearing embryos are now preferentially selected around the globe using this method. Importantly, some Deaf families desire a deaf child, and PGD–IVF is also an option for (...) them. Selection for genetic deafness, however, encounters widespread disapproval in the hearing community, including mainstream philosophy and bioethics. In this paper I apply Elizabeth Barnes’ value-neutral model of disability as mere-difference to the case of selecting for deafness. I draw on evidence from Deaf Studies and Disability Studies to build an understanding of deafness, the Deaf community, and the circumstances relevant to reproductive choices that may obtain for some Deaf families. Selection for deafness, with deafness understood as mere-difference and valued for its cultural identity, need not necessitate impermissible moral harms. I thus advocate that it is sometimes morally permissible to select for deafness in one’s child. (shrink)

The cochlear implant controversy involves questions about the nature of disability and the definition of “normal” bodies; it also raises arguments about the nature and significance of culture and the rights of minority cultures. I defend the claim that there might be such a thing as “Deaf culture” and then examine how two different understandings of the role of culture in the lives of individuals can lead to different conclusions about the rights of Deaf parents in relation to their children, (...) and about the ethics of public funding for research on cochlear implants. An argument asserting the rights of minority cultures to equal respect and consideration within a multicultural society, informed by communitarian political philosophy, offers the best prospect for the defence of the unique culture(s) of the Deaf. (shrink)

In her recent book, L. A. Paul presses a serious problem for normative decision theory. Normative decision theory seems to be inapplicable when the values of potential outcomes are unknown, or when our preferences may change as a result of our choice. Paul then offers a framework for overcoming these problems, known as therevelation approach. I argue that, contrary to what Paul suggests, this approach is unhelpful in the large class of cases where the decision at hand centrally concerns persons (...) other than the decision-maker. Unless Paul’s account is supplemented in order to handle such cases, many decisions will remain rationally intractable. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the (...) majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

In congenitally or prelingually deaf childrencochlear implantation is open to seriousethical challenge. The ethical dimension ofthis technology is closely related to both asocial standard of quality of life and to theuncertainty of the overall results of cochlearimplantation. Uncertainty with regards theacquisition of oral communicative skills.However, in the western world, available datasuggest that deafness is associated with thelowest educational level and the lowest familyincome. Notwithstanding the existence of aDeaf-World, deafness should be considered as ahandicap. Therefore, society should provide themeans for the (...) fulfilment of a deaf child'sspecific needs.For the time being there is no definitiveanswer with regard the best way to rehabilitatea particular deaf child. Therefore,communitarian values may be acceptable. If thedeaf child parents' decide not to implant,their decision should be respected. Guardiansare entitled to determine which standard ofbest interest to use in a specificcircumstance. They are the proper judges ofwhat (re)habilitation process is best for theirdeaf child. However, most deaf children areborn to two hearing parents. Probably, theywill not be acculturated in the Deaf-World. Itfollows that cochlear implantation is awelcomed (re)habilitation technology.If auditory (re)habilitation will in the futureprovide the necessary communicative skills, inparticular oral language acquisition, customs,values and attitudes of the hearing worldshould be regarded as necessary to accomplish adeaf child's right to an open future. Ifcochlear implantation technology will provideall deaf children with the capacity to developacceptable oral communicative skills –whatever the hearing status of the family andthe cultural environment – then auditory(re)habilitation will be an ethical imperative. (shrink)

If genetic diagnosis and preimplantation selection could be employed to produce deaf children, would it be acceptable for deaf parents to do so? Some say no, because there is no moral difference between selecting a deaf embryo and deafening a hearing child, and because it would be wrong to deafen infants. It is argued in this paper, however, that this view is untenable. There are differences between the two activities, and it is perfectly possible to condone genetic selection for deafness (...) while condemning attempts to deafen infants at birth. (shrink)

There has been much debate about whether the concept of disease articulated in Boorse’s biostatistical theory is value-neutral or value-laden. Here, I want to examine whether this debate matters. I suggest that there are two basic respects in which value-ladenness might be important: it could threaten either scientific legitimacy or moral permissibility. I argue that value-ladenness does not threaten the scientific legitimacy of our disease-concept because the concept makes little difference to the formulation and testing of scientific hypotheses. Likewise, even (...) if our disease-concept is value-laden, this does not show it is morally impermissible. To determine its permissibility, we must regard it as a tool to structure social institutions. Seen in that way, whether our disease-concept is morally permissible is a consequentialist matter and depends exquisitely on unanswered empirical questions. (shrink)

This text presents an overview of the bioethical debate on pediatric cochlear implants and pays particular attention to the analysis of the Deaf critique of implantation. It dismisses the idea that Deaf concerns are primarily about the upholding of Deaf culture and sign language. Instead it is argued that Deaf skepticism about child rehabilitation after cochlear surgery is well founded. Many Deaf people have lived experiences as subjects undergoing rehabilitation. It is not the cochlear technology in itself they view as (...) problematic, but rather the subsequent rehabilitation process. Because they themselves have experienced what they describe as harmful effects which relate above all to the idea of normalization, they have articulated worries for the new generations of deaf children in need of rehabilitation following cochlear implant surgery. These insights have attracted little attention, but could represent relevant ethical questions of which both practitioners and researchers in the field of implantation might be aware. (shrink)

Recent contributions to discussions on paediatric cochlear implantation in Norway indicate two mutually exclusive doctrines prescribing the best course of post-operative support for a child with cochlear implants; bilingually with sign language and spoken language simultaneously or primarily monolingually with speech only. This conflict constitutes an ethical problem for parents responsible for choosing between one of the two alternatives. This article puts forth the precautionary principle as a possible solution to this problem. Although scientific uncertainty exists in the case of (...) both doctrines, there exists a scenario of possible irreversible harm to some of the children habilitated monolingually. An application of the precautionary principle may hence suggest that it is rational to agree on the bilingual approach, at least for the time-being. (shrink)

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled (...) people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience. (shrink)

In recent years, neuroscience has been a particularly prolific discipline stimulating many innovative treatment approaches in medicine. However, when it comes to the brain, new techniques of intervention do not always meet with a positive public response, in spite of promising therapeutic benefits. The reason for this caution clearly is the brain’s special importance as “organ of the mind”. As such it is widely held to be the origin of mankind’s unique position among living beings. Likewise, on the level of (...) the individual human being, the brain is considered the material substrate of those traits that in combination render each person unique. In view of this preeminent significance of the brain, it is understandable that, in general, interventions into the brain are considered a delicate issue and that new techniques of intervention are scrutinised with particular care. However, in doing so it is important not to go to the opposite extreme and shy away from promising new therapeutic approaches for debilitating disorders of the brain. With respect to the new techniques of brain intervention a broad interdisciplinary perspective is required to discern irrational fear from justified concern. Hence, the Europäische Akademie established a project group consisting, on the one hand, of experts from different fields of medicine who have got first-hand experience of applying the techniques at issue and, on the other hand, of philosophers and a legal expert. The task of this team was to review the state of the art with respect to each single technique of intervening in the brain, to indicate future developments, and to address the ethical and legal issues common to all of them. The project’s outcome is the book at hand. (shrink)

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. (shrink)