The practice of prenatal screening for disability is sometimes objected to because of the hurt and offence such practices may cause to people currently living with disabilities. This objection is commonly termed “the expressivist objection”. In response to the objection it is standardly claimed that disabilities are analogous to illnesses. And just as it would be implausible to suppose reduction of the incidence of illnesses such as flu sends a negative message to ill people, so it is not plausible to (...) suppose prevention of disability sends a negative message to disabled people. The expressivist objection hinges, however, upon a view of the relationship between disability and self identity which sees disability as part of the identity of the disabled person, in a way in which illnesses such as flu cannot be. This possibility is generally not considered in critiques of the expressivist objection. In this paper, an “identity claim” to the effect that disabilities can be identity constituting is accepted and the force of the expressivist argument is reconsidered in the light of its acceptance. It is concluded that even when such an identity claim is accepted, the expressivist objection is still not morally compelling. (shrink)

This paper examines one particular justification for the screening and termination of embryos/fetuses which possess genetic features known to cause disability. The particular case is that put forward in several places by John Harris. He argues that the obligation to prevent needless suffering justifies the prevention of the births of disabled neonates. The paper begins by rehearsing Harris's case. Then, drawing upon claims advanced in a recent paper in the Journal of Medical Ethics, it is subjected to critical scrutiny, focusing (...) on Harris's “suffering claim” .1 It is argued that the suffering claim must be false if understood as an empirical claim. And, even if understood as a conceptual truth, it mistakenly assimilates the concepts of harm and suffering. Finally, again focusing on Harris's recent work in this area, his characterisation of disability as a “harmed condition” is shown not to apply in the case of at least some moderate forms of intellectual disability. (shrink)

This paper discusses the predicament of Oscar Pistorius. He is a Paralympic gold medallist who wishes to participate in the Olympics in Beijing in 2008. Following a brief introductory section, the paper discusses the arguments that could be, and have been, deployed against his participation in the Olympics, should he make the qualifying time for his chosen event (400m). The next section discusses a more hypothetical argument based upon a specific understanding of the fair opportunity rule. According to this, there (...) may be a case for allowing Pistorius to compete even if he should fail to make the official qualifying time. The final part of the paper reviews the situation at the time of writing and offers some assessment of the strategy of the IAAF in responding to it. It is argued below that the proper focus for assessment of Pistorius's eligibility to compete should not be on whether his blades lead to his having an unfair advantage over his competitors, but instead should focus on whether what he does counts as running. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the specific field of (...) genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

This paper is focused on the analysis of two documents (the Council of Europe's Bioethics Convention and the Additional Cloning Protocol) inasmuch as they refer to the relationship between human dignity and human genetic engineering. After presenting the stipulations of the abovementioned documents, I will review various proposed meanings of human dignity and will try to identify which of these seem to be at the core of their underlying assumptions. Is the concept of dignity proposed in the two documents coherent? (...) Is it morally legitimate? Is it, as some might assume, of Kantian origin? Does it have any philosophical roots? (shrink)

Recently, scholars have argued that disability activists' redefinition of disability' as a social problem, rather than a medical problem, is maleficent, unjust, and inconsistent. It seems that the discussion on whether disability is a medical or a social category is not settled and that disability is an essentially contested concept. However, the question is: What is the social aspect in disability? It appears that there is some confusion as to what the social is in a social definition of disability. The (...) article pursues possible reasons for this confusion by investigating the critique of the social model. This is followed by a discussion on what a possible space for the social might be in a social definition of disability. Such a space is illuminated by using the framework of the World Health Organization's International Classification of Functioning Disability and Health. The article suggests that disability as a social category is not inconsistent if reframed within a social relational model of disability. (shrink)

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

Knowing how to be good, or knowing how to go about trying to be good, is of immense theoretical and practical importance. And what goes for trying to be good oneself, goes also for trying to provide others with ways of being good, and for trying to make them good whether they like it or not. This is what is meant by 'moral enhancement'. John Harris explores the many proposed methodologies or technologies for moral enhancement: traditional ones like good parenting (...) and education; newer ones like chemical or biological intervention; modifying the environment to make bad outcomes of all sorts less likely; experimentation with political and social systems. The issue of whether and to what extent moral enhancement is possible is the subject of this book. (shrink)

ZusammenfassungDer Beitrag beschäftigt sich mit der Frage, ob eine Behinderung immer als Form von Leid betrachtet werden muss. Mit Hilfe einer Unterscheidung zwischen absoluten und komparativen Einschränkungen des Wohls wird aufgezeigt, dass die bloße Tatsache einer vorliegenden medizinischen Schädigung nicht hinreicht, ein Urteil über das absolute Wohl einer Person zu treffen. Es werden verschiedene Argumente geprüft, warum Behinderung dennoch generell negativ bewertet werden sollte. Diese werden zurückgewiesen. Abschließend wird eine Überlegung eingeführt, wonach gleichwohl bestimmte Formen der Behinderung als objektive Beeinträchtigungen (...) des Wohls zu gelten haben, nämlich dann, wenn basale Fähigkeiten betroffen sind. (shrink)

From the first initiatives in preimplantation genetic diagnosis and gene therapy through the advent of stem cell research to the development of mammalian cloning, the past two decades have witnessed remarkable advances in “reprogenetic” medicine: the union of assisted reproductive technologies with genetic control. This period has also been marked by intense debates within the bioethical literature and in national policy forums about the appropriate uses of these emerging human capabilities. We can now, in a limited way, select for genetic (...) traits, and the power to modify the genome or introduce new gene sequences is not far off. How should these new powers be used? (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)

Asperger syndrome (AS) is an autistic spectrum condition that shares the range of social impairments associated with classic autism widely regarded as disabling, while also often giving rise to high levels of ability in areas such as maths, science, engineering and music. The nature of this striking duality of disability and ability is examined, along with its implications for our thinking about disability and the relevance of levels and kinds of disability to reproductive choices. In particular, it may be seen (...) as posing a challenge to John Harris's influential position in reproductive ethics relating to disability. The paper argues that if, as Harris maintains, there is a quite general moral obligation to avoid bringing disabled lives into the world regardless of the level of disability, then AS must be seen as having a strong claim to be exempt from such an obligation. However, a broader critique of Harris's position leads to the conclusion that, in fact, this putative obligation does not exist. (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)

The claim that we have a moral obligation, where a choice can be made, to bring to birth the 'best' child possible, has been highly controversial for a number of decades. More recently Savulescu has labelled this claim the Principle of Procreative Beneficence. It has been argued that this Principle is problematic in both its reasoning and its implications, most notably in that it places lower moral value on the disabled. Relentless criticism of this proposed moral obligation, however, has been (...) unable, thus far, to discredit this Principle convincingly and as a result its influence shows no sign of abating. I will argue that while criticisms of the implications and detail of the reasoning behind it are well founded, they are unlikely to produce an argument that will ultimately discredit the obligation that the Principle of Procreative Beneficence represents. I believe that what is needed finally and convincingly to reveal the fallacy of this Principle is a critique of its ultimate theoretical foundation, the notion of impersonal harm. In this paper I argue that while the notion of impersonal harm is intuitively very appealing, its plausibility is based entirely on this intuitive appeal and not on sound moral reasoning. I show that there is another plausible explanation for our intuitive response and I believe that this, in conjunction with the other theoretical criticisms that I and others have levelled at this Principle, shows that the Principle of Procreative Beneficence should be rejected. (shrink)

What role should legislation or policy play in avoiding the complications of in-vitro fertilization? In this article, we focus on single versus double embryo transfer, and assess three arguments in favour of mandatory single embryo transfer: risks to the mother, risks to resultant children, and costs to society. We highlight significant ethical concerns about each of these. Reproductive autonomy and non-paternalism are strong enough to outweigh the health concerns for the woman. Complications due to non-identity cast doubt on the extent (...) to which children are harmed. Twinning may offer an overall benefit rather than burden to society. Finally, including the future health costs for children in reproductive policy is inconsistent with other decisions. We conclude that mandatory single embryo transfer is not justified and that a number of countries should reconsider their current embryo transfer policy. (shrink)

The screening of in vitro embryos resulting from in vitro fertilization treatment for chromosomal abnormalities has as a primary aim to help patients achieve a successful pregnancy. Most IVF centers will not transfer aneuploid embryos, as they have an enhanced risk of leading to implantation failure and miscarriage. However, some aneuploidies, such as trisomy-21, can lead to viable pregnancies and to children with a variable health prognosis, and some prospective parents may request transfer of such embryos. I present two cases (...) where the testing for and detection of trisomy-21 can lead to conflicts between IVF professionals and patients and argue that in most such cases respect for choices of patients should prevail. (shrink)

Although Foucault adamantly refused to make moral pronouncements or dictate moral principles or political programs to his readers, his work offers a number of tools and concepts that can help us develop our own ethical views and practices. One of these tools is genealogical analysis, and one of these concepts is “biopower.” Specifically, this essay seeks to demonstrate that Foucault's concept of biopower and his genealogical method are valuable as we consider moral questions raised by genetic enhancement technologies. First, it (...) examines contemporary debate over the development, marketing, and application of such technologies, suggesting that what passes for ethical deliberation is often little more than political maneuvering in a field where stakes are very high and public perceptions will play a crucial role in decisions about which technologies will be funded or disallowed. It goes on to argue that genuine ethical deliberation on these issues requires some serious investigation of their historical context. Accordingly, then, it takes up the oft-heard charge from critics that genetic enhancement technologies are continuous with twentieth-century eugenic projects or will usher in a new age of eugenics. Foucault explicitly links twentieth-century eugenics with the rise of biopower. Through review of some aspects of the twentieth-century eugenics movement alongside some of the rhetoric and claims of enhancement's modern-day proponents, the essay shows ways in which deployment of genetic enhancement technologies is and is not continuous with earlier deployments of biopower. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

Disability activists' redefinition of “disability” as a social, rather than a medical, problem attempts to reassign causality. We explicate the untenable implications of this approach and argue this definition is maleficent, unjust, and inconsistent. Thus, redefining disability as a socially caused phenomenon is, from a moral point of view, ill-advised.

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the (...) expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still. (shrink)

In addressing the regulation of human genetic futures, scientific standards concerning human kinds are endorsed by philosophical approaches that tend to exclude many people with genetic conditions from the deliberative process. In broadening the axiological, ontological and epistemological framework to include disability perspectives, the focus is shifted from questions of regulation to practical matters of participation, invoking ideals of community equality and enabled choice. In developing practical community engagements to deliberate upon genetic futures, a process that allows dialectical encounter between (...) eugenic and non-eugenic approaches is envisioned so that strong versions of eugenics are avoided. (shrink)

Der Beitrag beschäftigt sich mit der Frage, ob eine Behinderung immer als Form von Leid betrachtet werden muss. Mit Hilfe einer Unterscheidung zwischen absoluten und komparativen Einschränkungen des Wohls wird aufgezeigt, dass die bloße Tatsache einer vorliegenden medizinischen Schädigung nicht hinreicht, ein Urteil über das absolute Wohl einer Person zu treffen. Es werden verschiedene Argumente geprüft, warum Behinderung dennoch generell negativ bewertet werden sollte. Diese werden zurückgewiesen. Abschließend wird eine Überlegung eingeführt, wonach gleichwohl bestimmte Formen der Behinderung als objektive Beeinträchtigungen (...) des Wohls zu gelten haben, nämlich dann, wenn basale Fähigkeiten betroffen sind. (shrink)

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD for those (...) conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

This thesis explores the concept of "Sanctity of Life" from the perspective of what "life," in particular human life, means today. With the rapid advances in science and modern medical practice, the concept of life has undergone many changes, shaking the foundations of what before made us view life as sacred. Modern thought has brought new forms of understanding to the concept of life.

The drawbacks of using the concepts of models in discussing the problems of disabled people are discussed. It is suggested that the terms “impairment”, “disability”, and “handicap” can unify the different models and enhance the position of people with disabilities in society.

The world of disability theory is currently divided between those who insist it reflects a physical fact affecting life quality and those who believe disability is defined by social prejudice. Despite a dialogue spanning bioethical, medical and social scientific literatures the differences between opposing views remains persistent. The result is similar to a figure-ground paradox in which one can see only part of a picture at any moment. This paper attempts to find areas of commonality between the opposing camps, and (...) thus to rearrange the figures of the paradox at a fundamental level. The purpose is first to identify areas in which common ground can be achieved, and secondarily, to clarify the areas in which disagreement continues. While a general and unified theory of physical difference/disability is beyond the scope of this paper the result may advance that general goal. (shrink)

With the recent advancements in scientific comprehension of genetics and the decipherment of complex techniques for editing human genomes, liberal eugenics—eugenic ideal premised on the liberal values of autonomy and pluralism that leaves reproductive choices to parents rather than anachronistic statist authoritarian interventions—has inevitably become a polarising conundrum in contemporary liberal societies as to its utility and destructiveness. Focusing on one species of liberal eugenics—namely, genome editing interventions—I contend that liberal eugenics could be harmful—harm herein construed as that which undermines (...) the salient liberal values of equality, autonomy, and pluralism—since it is itself antithetical to the bases of the liberal society. This contention is based upon three premises: first, that individuals are rather seldom rational decision-makers such that leaving all reproductive choices to the whims of individual parents would be immensely counterproductive to future offspring’s right to open future; second, that liberal eugenics—much like its authoritarian antecedent—could intersect with myriad identities, including race, class, sex, disability, and sexual orientation in ways that might exacerbate social divisions, marginalise different groups, and engender homogeneity; and third, that it undermines individual autonomy of the future person as a member of the liberal community, particularly if their capacities and abilities are tailored to fit parents’ specific life projects and putatively reasonable conceptions of the good. The underscored potential malaises of liberal eugenics should, I argue, be discursively negotiated between parents and the state via the development of robust general laws that regulate heritable genome editing interventions to ensure that the welfare of the future persons is prioritised and that the liberal commitment to autonomy is immune to antiliberal perversions. (shrink)

Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest (...) to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing. (shrink)

It is now broadly accepted that disability is a concept infused with both descriptive and evaluative meaning, such that invoking the concept of disability necessarily involves making judgements of moral value as well as describing certain facts about individuals. This paper aims to map the complex terrain that shapes our current understandings of disability by outlining five distinct ‘discourses of disability’. It is shown how the similarities and differences between the discourses hinge on different ways of making sense of the (...) descriptive and evaluative dimensions of the concept, and the relationships between these dimensions. The paper concludes by considering the specific implications that these different ways of elucidating the concept of disability might have for the provision of clinical ethics support, both in terms of shaping ethical decision-making relating to people with disabilities and in terms of framing the process of providing clinical ethics support itself. (shrink)

I denne teksten blir følgende spørsmål tatt opp til drøfting: Er det å ta medisinsk teknologi i bruk for å selektere et døvt barn mer etisk problematisk enn det motsatte; å bruke teknologien for å sikre seg et hørende barn? På bakgrunn av fire premisser konkluderer jeg med at både seleksjon for døvhet og for hørsel er tilnærmet like etisk problematisk. De fire premissene er 1) at seleksjonskriteriet sykdom eller skade bør erstattes av autentisitetsbetraktninger, 2) at døve og hørende har (...) samme potensial for autentisk livsutfoldelse, selv om det ikke kan avvises at døvhet kjennetegnes ved manglende hørsel, 3) at seleksjon innebærer fravalg av liv som har autentisk potensialitet enten som døv eller hørende, og 4) at dette fravalget involverer en etisk kostnad. Konklusjonen har enkelte andre implikasjoner og en restproblematikk som belyses avslutningsvis. (shrink)