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)

Susan has been profoundly deaf since childhood. She is a hearing aid wearer, and likes to use the induction loops built into some public spaces, such as theaters and cinemas, to help cut down the background noise that can make hearing speech very difficult. But this depends on the building having an induction loop fitted and properly maintained. Like many other induction loop users, Susan frequently finds that the advertised loop system is either working poorly or not working at all. (...) Almost as often, she then has the experience of making a complaint about it only to have the problem denied. If she persists, she is often then met... (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...) have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (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 this paper I explore the potential of virtue ethical ideas to generate a new way of thinking about the ethical questions surrounding the creation of children. Applying ideas from neo-Aristotelian virtue ethics to the parental sphere specifically, I develop a framework for the moral assessment of reproductive actions that centres on the concept of parental virtue. I suggest that the character traits of the good parent can be used as a basis for determining the moral permissibility of a particular (...) reproductive action. I posit three parental virtues and argue that we can see the moral status of a reproductive action as determined by the relationship between such an action and (at least) these virtues. Using a case involving selection for deafness, I argue that thinking in terms of the question ‘would a virtuous parent do this?’ when morally assessing reproductive action is a viable and useful way of thinking about issues in reproductive ethics. (shrink)

abstract In this paper we question the basis on which judgements are made about the ‘quality’ of the lives of people whose embodied experience is anomalous, specifically in cases of impairments. In moral and political philosophy it is often assumed that, suitably informed, we can overcome epistemic gaps through the exercise of moral imagination: ‘putting ourselves in the place of others’, we can share their points of view. Drawing on phenomenology and theories of embodied cognition, and on empirical studies, we (...) suggest that there are barriers to imagining oneself differently situated, or imagining being another person, arising in part from the way imagination is constrained by embodied experience. We argue that the role of imagination in moral engagement with others is to expand the scope of our sympathies rather than to enable us to put ourselves in the other's place. We argue for explicit acknowledgement that our assessments of others’ QOL are likely to be shaped by the specifics of our own embodiment, and by the assumptions we make as a consequence about what is necessary for a good quality of life. (shrink)

This paper suggests the adoption of a ‘capability approach’ to key concepts in healthcare. Recent developments in theoretical approaches to concepts such as ‘health’ and ‘disease’ are discussed, and a trend identified of thinking of health as a matter of having the capability to cope with life’s demands. This approach is contrasted with the WHO definition of health and Boorse’s biostatistical account. We outline the ‘capability approach’, which has become standard in development ethics and economics, and show how existing work (...) in those areas can profitably be adapted to healthcare. Cases are used to illustrate the value of adopting a capability approach. (shrink)

To be made aware of bioethical issues related to their disciplines, undergraduate students in biology and pharmaceutical sciences at the University of Basel are required to enroll in the bioethics course called “Introduction to Bioethics”. This article describes the chances and challenges faced when teaching a large number of undergraduate biology and pharmaceutical sciences students. Attention is drawn to the relevance and specific ethical issues that biology and pharmaceutical sciences students may be confronted with and to how these could be (...) integrated into ethics curricula. Results from a survey addressing the knowledge and opinion of students taking the course in spring semester 2012, 2013, and 2014 are presented and discussed. Finally, we describe the lessons learned and how we have improved the course based on students’ feedback throughout the following years. (shrink)

The principle of the child's right to an open future was first proposed by the legal philosopher Joel Feinberg and developed further by bioethicist Dena Davis. The principle holds that children possess a unique class of rights called rights in trust—rights that they cannot yet exercise, but which they will be able to exercise when they reach maturity. Parents should not, therefore, take actions that permanently foreclose on or pre-empt the future options of their children, but leave them the greatest (...) possible scope for exercising personal life choices in adulthood. Davis particularly applies the principle to genetic counselling, arguing that parents should not take deliberate steps to create physically abnormal children, and to religion, arguing that while parents are entitled to bring their children up in accordance with their own values, they are not entitled to inflict physical or mental harm, neither by omission nor commission. In this paper, I aim to elucidate the open future principle, and consider whether it is applicable to non-therapeutic circumcision of boys, whether performed for cultural/religious or for prophylactic/health reasons. I argue that the principle is highly applicable to non-therapeutic circumcision, and conclude that non-therapeutic circumcision would be a violation of the child's right to an open future, and thus objectionable from both an ethical and a human rights perspective. (shrink)

It has been forty years since the first multi-channel cochlear implant was used in Australia. While heralded in the hearing world as one of the greatest inventions in modern medicine, not everyone reflects on this achievement with enthusiasm. For many people in the Deaf community, they see the cochlear implant as a tool that reinforces a social construct that pathologizes deafness and removes Deaf identity. In this paper, I set out the main arguments for and against cochlear implantation. While I (...) conclude that, on balance, cochlear implants improve the well-being and broaden the open futures of deaf children, this does not justify mandating implants in circumstances where parents refuse them because this may compound unintended harms when society interferes in the parent-child relationship. For this reason, I argue that parental refusal of cochlear implantation falls within Gillam’s concept of the zone of parental discretion. (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)