Accounts of the concepts of function and dysfunction have not adequately explained what factors determine the line between low‐normal function and dysfunction. I call the challenge of doing so the line‐drawing problem. Previous approaches emphasize facts involving the action of natural selection (Wakefield 1992a, 1999a, 1999b) or the statistical distribution of levels of functioning in the current population (Boorse 1977, 1997). I point out limitations of these two approaches and present a solution to the line‐drawing problem that builds on the (...) second one. (shrink)

Healthcare (including public health) is special because it protects normal functioning, which in turn protects the range of opportunities open to individuals. I extend this account in two ways. First, since the distribution of goods other than healthcare affect population health and its distribution, I claim that Rawls's principles of justice describe a fair distribution of the social determinants of health, giving a partial account of when health inequalities are unjust. Second, I supplement a principled account of justice for health (...) and healthcare with an account of fair process for setting limits or rationing care. This account is provided by three conditions that comprise "accountability for reasonableness.". (shrink)

It is commonly believed that disability disqualifies people from full participation in or recognition by society. This view is rooted in eugenic logic, which tells us that our world would be a better place if disability could be eliminated. In opposition to this position, I argue that that disability is inherent in the human condition and consider the bioethical question of why we might want to conserve rather than eliminate disability from our shared world. To do so, I draw together (...) an eclectic, rather than systematic, configuration of counter-eugenic arguments for conserving disability. The idea of preserving intact, keeping alive, and even encouraging to flourish denoted by conserve suggests that disabilities would be better understood as benefits rather than deficits. I present, then, a reading of disability as a potentially generative resource rather than unequivocally restrictive liability. In other words, what I consider here is the cultural and material contributions disability offers to the world. (shrink)

This paper argues that non-identity actions are wrong because they _cause_ harm to people. While non-identity actions also typically benefit people, failure to act would similarly benefit someone, so considerations of benefit are ineligible to justify the harm. However, in some non-identity cases, failure to act would not benefit anyone: cases where one is choosing whether to procreate at all. These are the _hard_ non-identity cases. Not all "different-number" cases are hard. In some cases, we don't know whether acting would (...) result in more or fewer people; this paper argues that this _epistemic_ factor makes acting in these cases wrong. (shrink)

This is a critical response to "Defending Eugenics", published in MBR in 2018.

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)

Can it be better or worse for a person to exist than not to exist at all? This old and challenging existential question has been raised anew in contemporary moral philosophy, mainly for two reasons. First, traditional “impersonal” ethical theories, such as utilitarianism, have counterintuitive implications in population ethics, for example, the repugnant conclusion. Second, it has seemed evident to many that an outcome can be better than another only if it is better for someone, and that only moral theories (...) that are in this sense “person affecting” can be correct. The implications of this Person-Affecting Restriction will differ radically, however, depending on which answer one gives to the existential question. The negative answer, which we argue against, would make the restriction quite untenable. Hence, many of the problems regarding our moral duties to future generations turn around the issue at hand. (shrink)

Lifestyle diseases constitute an increasing proportion of health problems and this trend is likely to continue. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge. Holding individuals accountable for their choices in the context of health care is, however, controversial. There are powerful arguments both for and against such policies. In this article the main arguments for and the traditional arguments against the use of individual responsibility as a criterion for (...) the distribution of scarce health resources will be briefly outlined. It is argued that one of the most prominent contemporary normative traditions, liberal egalitarianism, presents a way of holding individuals accountable for their choices that avoids most of the problems pointed out by the critics. The aim of the article is to propose a plausible interpretation of liberal egalitarianism with respect to responsibility and health care and assess it against reasonable counter-arguments. (shrink)

In this paper, we argue that lesbian couples who wish to have children who are genetically related to both of them should be allowed access to mitochondrial replacement techniques (MRTs). First, we provide a brief explanation of mitochondrial diseases and MRTs. We then present the reasons why MRTs are not, by nature, therapeutic. The upshot of the view that MRTs are non-therapeutic techniques is that their therapeutic potential cannot be invoked for restricting their use only to those cases where a (...) mitochondrial DNA disease could be ‘cured’. We then argue that a positive case for MRTs is justified by an appeal to reproductive freedom, and that the criteria to access these techniques should hence be extended to include lesbian couples who wish to share genetic parenthood. Finally, we consider a potential objection to our argument: that the desire to have genetically related kin is not a morally sufficient reason to allow lesbian couples to access MRTs. (shrink)

The claim that addiction is a brain disease is almost universally accepted among scientists who work on addiction. The claim’s attraction rests on two grounds: the fact that addiction seems to be characterized by dysfunction in specific neural pathways and the fact that the claim seems to the compassionate response to people who are suffering. I argue that neural dysfunction is not sufficient for disease: something is a brain disease only when neural dysfunction is sufficient for impairment. I claim that (...) the neural dysfunction that is characteristic of addiction is not sufficient for impairment, because people who suffer from that dysfunction are impaired, sufficiently to count as diseased, only given certain features of their context. Hence addiction is not a brain disease (though it is often a disease, and it may always involve brain dysfunction). I argue that accepting that addiction is not a brain disease does not entail a moralizing attitude toward people who suffer as a result of addiction; if anything, it allows for a more compassionate, and more effective, response to addiction. (shrink)

In the last 50 years, discussions of how to understand disability have been dominated by the medical and social models. Paradoxically, both models overlook the disabled person’s experience of the lived body, thus reducing the body of the disabled person to a physiological body. In this article we introduce what we call the Ecological-Enactive (EE) model of disability. The EE-model combines ideas from enactive cognitive science and ecological psychology with the aim of doing justice simultaneously to the lived experience of (...) being disabled, and the physiological dimensions of disability. More specifically, we put the EE model to work to disentangle the concepts of disability and pathology. We locate the difference between pathological and normal forms of embodiment in the person’s capacity to adapt to changes in the environment. To ensure that our discussion remains in contact with lived experience, we draw upon phenomenological interviews we have carried out with people with Cerebral Palsy. (shrink)

Intelligent neurotechnology is an emerging field that combines neurotechnologies like brain-computer interface (BCI) with artificial intelligence. This paper introduces a capability framework to assess the responsible use of intelligent BCI systems and provide practical ethical guidance. It proposes two tests, the threshold and flourishing tests, that BCI applications must meet, and illustrates them in a series of cases. After a brief introduction (Section 1), Section 2 sets forth the capability view and the two tests. It illustrates the threshold test using (...) examples from clinical medicine of BCI applications that enable patients with profound disabilities to function at a threshold level through computer mediation. Section 3 illustrates the flourishing test by exploring possible future applications of BCI involving neuroenhancements for healthy people, using examples adapted from research currently underway in the US military. Section 3 applies a capability lens to a complex case involving dual effects, both therapeutic and non-therapeutic, showing how the threshold and flourishing tests resolve the case. Section 4 replies to three objections: neurorights are the best tool for assessing BCI; the two tests are moving targets; and the analysis utilizes a capability view to do work it is not designed for. The paper concludes that a capability view offers unique advantages and gives practical guidance for evaluating the responsible use of present and future BCI applications. Extrapolating from our analysis may help guide other emerging technologies, such as germline gene editing, expected to impact central human capabilities. (shrink)

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (shrink)

The argument of Julian Savulescu’s 2001 paper, “Procreative Beneficence: Why We Should Select the Best Children” is flawed in a number of respects. Savulescu confuses reasons with obligations and equivocates between the claim that parents have some reason to want the best for their children and the more radical claim that they are morally obligated to attempt to produce the best child possible. Savulescu offers a prima facie implausible account of parental obligation, as even the best parents typically fail to (...) do everything they think would be best for their children let alone everything that is in fact best for their children. The profound philosophical difficulties which beset the attempt to formulate a plausible account of the best human life constitute a further independent reason to resile from Savulescu’s conclusion. Savulescu’s argument also requires parents to become complicit with racist and homophobic oppression, which is yet another reason to reject it. Removing the equivocation from Savulescu’s argument allows us to see that the assertion of an obligation to choose the “best child” has much more in common with the “old” eugenics than Savulescu acknowledges. (shrink)

: This article critically examines the constitution of impairment in prenatal testing and screening practices and various discourses that surround these technologies. While technologies to test and screen prenatally are claimed to enhance women's capacity to be self-determining, make informed reproductive choices, and, in effect, wrest control of their bodies from a patriarchal medical establishment, I contend that this emerging relation between pregnant women and reproductive technologies is a new strategy of a form of power that began to emerge in (...) the late eighteenth century. Indeed, my argument is that the constitution of prenatal impairment, by and through these practices and procedures, is a widening form of modern government that increasingly limits the field of possible conduct in response to pregnancy. Hence, the government of impairment in utero is inextricably intertwined with the government of the maternal body. (shrink)

Whether it is fair to use personal responsibility of patients for their own health as a rationing criterion in healthcare is a controversial matter. A host of difficulties are associated with the concept of personal responsibility in the field of medicine. These include, in particular, theoretical considerations of justice and such practical issues as multiple causal factors in medicine and freedom of health behaviour. In the article, personal responsibility is evaluated from the perspective of several theories of justice. It is (...) argued that in a healthcare system based on both equality of opportunity and solidarity, responsible health behaviour can—in principle—be justifiably expected. While the practical problems associated with personal responsibility are important, they do not warrant the common knee-jerk refusal to think more deeply about responsibility for health as a means of allocating healthcare resources. In conclusion, the possibility of introducing personal responsibility as a fair rationing criterion is briefly sketched. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

This article is a feminist intervention into the ways that disability is researched and represented in philosophy at present. Nevertheless, some of the claims that I make over the course of the article are also pertinent to the marginalization in philosophy of other areas of inquiry, including philosophy of race, feminist philosophy more broadly, indigenous philosophies, and LGBTQI philosophy. Although the discipline of philosophy largely continues to operate under the guise of neutrality, rationality, and objectivity, the institutionalized structure of the (...) discipline implicitly and explicitly promotes certain ontologies, epistemologies, and methodologies as bona fide philosophy, while casting the ontologies, epistemologies, and methodologies of marginalized philosophies as mere simulacra of allegedly fundamental ways of knowing and doing philosophy and thus rendering these marginalized philosophies more or less expendable. This article is designed to show that legitimized philosophical discourses are vital mechanisms in the problematization of disability. (shrink)

Why potential parents should select the best child of possible children, and the necessity of a dialogue about the context of a reproductive decision.The principle of Procreative Beneficence is the principle of selecting the best child of the possible children one could have. This principle is elaborated on and defended against a range of objections. In particular, focus is laid on four objections that Michael Parker raises: that it is underdetermining, that it is insensitive to the complex nature of the (...) good, that it is self-defeating and that it is overly individualistic. Procreative Beneficence is a useful principle in reproductive decision-making. It is necessary to be more active in making selection decisions about what kind of child to have.Parker1 raises four objections to the principle of Procreative Beneficence . I will address these in turn. Procreative Beneficence is underdeterminingParker claims that Procreative Beneficence is underdetermining. By “underdetermining”, he means that the principle will not give clear and determinate answers as to which lives are better or best. Parker argues that “ranking possible lives as “better” or “worse” is “highly problematic”.Ranking lives is a very complex matter. Let us distinguish between: the value of a whole life and the value of an individual feature of a life .We should also distinguish between valuation ex ante and ex post . In Procreative Beneficence, I likened genetic testing to playing the wheel of fortune.2 Just because we have a weak chance of winning, does not mean we should not play the game. The only reason not to play a game that …. (shrink)

Ethical debate surrounding human enhancement, especially by biotechnological means, has burgeoned since the turn of the century. Issues discussed include whether specific types of enhancement are permissible or even obligatory, whether they are likely to produce a net good for individuals and for society, and whether there is something intrinsically wrong in playing God with human nature. We characterize the main camps on the issue, identifying three main positions: permissive, restrictive and conservative positions. We present the major sub-debates and lines (...) of argument from each camp. The review also gives a flavor of the general approach of key writers in the literature such as Julian Savulescu, Nick Bostrom, Michael Sandel, and Leon Kass. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

Eugenics is often referred to in debates on the ethics of reproductive technologies and practices, in relation to the creation of moral boundaries between acceptable and unacceptable technologies, and acceptable and unacceptable uses of these technologies. Historians have argued that twentieth century eugenics cannot be reduced to a uniform set of practices, and that no simple lessons can be drawn from this complex history. Some authors stress the similarities between past eugenics and present reproductive technologies and practices (what I define (...) throughout the paper as ‘the continuity view’) in order to condemn the latter. Others focus on the differences between past and present practices (what I define throughout the paper as ‘the discontinuity view’) in order to defend contemporary reproductive technologies. In this paper, I explore the meanings of the word ‘eugenics’ and the relationship between its past and present uses in terms of contemporary debates on reproductive technologies and practices. I argue that moral disagreement about present technologies originate in divergent views of condemnable and justifiable features of the past. (shrink)

Controversial and provocative, To Be Real is a blueprint for the creation of a new political force.

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)

This article explores the respective roles that medical and technological cognitive enhancements, on the one hand, and the moral and epistemic virtues traditionally understood, on the other, can play in enabling us to lead the good life. It will be shown that neither the virtues nor cognitive enhancements (of the kind we have access to today or in the foreseeable future) on their own are likely to enable most people to lead the good life. While the moral and epistemic virtues (...) quite plausibly are both necessary and sufficient for the good life in theory, virtue ethics is often criticised for being elitist and unachievable in practice for the vast majority. Some cognitive enhancements, on the other hand, might be necessary for the good life but are far from sufficient for such an existence. Here it will be proposed that a combination of virtue and some cognitive enhancements is preferable. (shrink)

Though the reputation of eugenics has been tarnished by history, eugenics per se is not necessarily a bad thing. Many advocate a liberal new eugenics—where individuals are free to choose whether or not to employ genetic technologies for reproductive purposes. Though genetic interventions aimed at the prevention of severe genetic disorders may be morally and socially acceptable, reproductive liberty in the context of enhancement may conflict with equality. Enhancement could also have adverse effects on utility. The enhancement debate requires a (...) shift in focus. What the equality and/or utility costs of enhancement will be is an empirical question. Rather than philosophical speculation, more social science research is needed to address it. Philosophers, meanwhile, should address head-on the question of how to strike a balance between liberty, equality, and utility in cases of conflict (in the context of genetics). (shrink)

The hopes and fears expressed in the debate on human enhancement are not always based on a realistic assessment of the expected possibilities. Discussions about extreme scenarios may at times obscure the ethical and policy issues that are relevant today. This paper aims to contribute to an adequate and ethically sound societal response to actual current developments. After a brief outline of the ethical debate concerning neuro-enhancement, it describes the current state of the art in psychopharmacological science and current uses (...) of psychopharmacological enhancement, as well as the prospects for the near future. It then identifies ethical issues regarding psychopharmacological enhancements that require attention from policymakers, both on the professional and on the governmental level. These concern enhancement research, the gradual expansion of medical categories, off-label prescription and responsibility of doctors, and accessibility of enhancers on the Internet. It is concluded that further discussion on the advantages and drawbacks of enhancers on a collective social level is still needed. (shrink)

A normatively adequate public health ethics needs to be anchored in political philosophy rather than in ethics. Its central ethical concerns are likely to include trust and justice, rather than autonomy and informed consent.

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall—any negative impacts on welfare are due to social injustice. This article argues that Barnes’s Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad—by itself it makes a person worse off, apart from a non-accommodating environment; (...) (2) universally bad—it lowers quality of life for every intellectually disabled person; and (3) globally bad—it reduces a person’s overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference. (shrink)

A key concern of global ethics is the equitable distribution of benefits and burdens amongst persons belonging to different populations. Until recently, the philosophical literature on global distribution was dominated by the question of how benefits and burdens should be divided amongst contemporaries. Recent years, however, have seen an increase in research on the scope and content of our duties to future generations. This has led to a number of innovative attempts to extend principles of distribution across time while retaining (...) a focus on the entitlements of the existing poor. In this article, I examine a key aspect of intergenerational justice, namely, the appropriate 'pattern' of well-being that should be obtained across generations. With the aid of research into the impacts of global climate change, I evaluate a number of rival accounts of the pattern of justice and go on to explore the merits of a 'global sufficientarian' ethic, which holds that as many persons as possible should enjoy a satisfactory level of well-being regardless of when or where they live. (shrink)

Since the first sex reassignment operations were performed, individual sex has come to be, to some extent at least, a technological artifact. The existence of sperm sorting technology, and of prenatal determination of fetal sex via ultrasound along with the option of termination, means that we now have the power to choose the sex of our children. An influential contemporary line of thought about medical ethics suggests that we should use technology to serve the welfare of individuals and to remove (...) limitations on the opportunities available to them. I argue that, if these are our goals, we may do well to move towards a “post sex” humanity. Until we have the technology to produce genuine hermaphrodites, the most efficient way to do this is to use sex selection technology to ensure that only girl children are born. There are significant restrictions on the opportunities available to men, around gestation, childbirth, and breast-feeding, which will be extremely difficult to overcome via social or technological mechanisms for the foreseeable future. Women also have longer life expectancies than men. Girl babies therefore have a significantly more “open” future than boy babies. Resisting the conclusion that we should ensure that all children are born the same sex will require insisting that sexual difference is natural to human beings and that we should not use technology to reshape humanity beyond certain natural limits. The real concern of my paper, then, is the moral significance of the idea of a normal human body in modern medicine. (shrink)

Recent years have seen increased interest among 4E cognition scholars in physical disability, leading to the development of the EE-model of disability. This paper contributes to the literature on disability and 4E cognition in three key ways. First, it examines the relationship between the EE-model and social constructivist views that address the bodily reality of disablement, highlighting commonalities and distinctions. Second, it critiques the EE-model’s focus on individual strategies for expanding disabled persons’ affordance landscapes, arguing that disability policy should integrate (...) insights from both the EE-model and social constructivist approaches. Finally, it assesses the EE-model against the 'dogma of harmony'. We argue that while the EE-model’s focus on active human-environment collaboration is valuable, it can inadvertently perpetuate this dogma. We contend that integrating certain social constructivist insights can help the EE-model avoid the dogma of harmony. (shrink)

Biomedical innovations are making possible the enhancement of human capabilities. There are two philosophical stances on the role that medicine should play in this respect. On the one hand, naturalism rejects every medical intervention that goes beyond preventing and treating disease. On the other hand, welfarism advocates enhancements that foster subjective well-being. We will show that both positions have considerable shortcomings. Consequently, we will introduce a third characterization in which therapies and enhancements can be reconciled with the legitimate objectives of (...) medicine inasmuch as they improve the capabilities that enable the freedom to pursue personal well-being. (shrink)

Most people have a clear sense of what they mean by disability, and have little trouble identifying conditions they consider disabling. Yet providing a clear and consistent definition of disability is far from straightforward. Standardly, disability is understood as the restriction in our abilities to perform tasks, as a result of an impairment of normal physical or cognitive human functioning. However, which inabilities matter? We are all restricted by our bodies, and are all incapable of performing some tasks, but most (...) of these inabilities are not considered disabilities. If, then, we are to avoid the category of disability becoming overly broad—and thus politically and practically useless—we need some way of picking out the specific inabilities that are disabling. I argue that our answer should be informed by an account of the opportunities individuals are entitled to be able to perform as a matter of justice. Thus, to be disabled is to have these opportunities restricted, and not to deviate from the species norm or lack any ability that might improve our well-being. (shrink)

Disagreement about the properattitude toward disability proliferates. Yetlittle attention has been paid to an importantmeta-question, namely, whether ``disability'' isan essentially contested concept. If so, recentdebates between bioethicists and the disabilitymovement leadership cannot be resolved. Inthis essay I identify some of the presumptionsthat make their encounters so contentious. Much more must happen, I argue, for anydiscussions about disability policy andpolitics to be productive. Progress depends onconstructing a neutral conception ofdisability, one that neither devaluesdisability nor implies that persons withdisabilities are inadequate. So, (...) first, I clearaway the conceptual underbrush that makes usthink our idea of disability must bevalue-laden. Second, I sketch someconstituents of, and constraints upon, aneutral notion of disability. (shrink)

This paper argues that we can see our lives as a snapshot happening now or as a moving picture extending across time. These dual ways of seeing our lives inform how we conceive of the problem of age group justice. A snapshot view sees age group justice as an interpersonal problem between distinct age groups. A moving picture view sees age group justice as a first-person problem of prudential choice. This paper explores these different ways of thinking about age group (...) justice and illustrates them using a principle of respect for human dignity, understood in terms of reasonable support for floor level central human capabilities at each stage of life. I argue that different frames are suitable for different kinds of decisions, and each provides a true, but partial, picture of aging and age group justice. (shrink)

It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring (some/most) differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (shrink)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

New scientific advances have created previously unheard of possibilities for enhancing combatants' performance. Future war fighters may be smarter, stronger, and braver than ever before. If these technologies are safe, is there any reason to reject their use? In this article, I argue that the use of enhancements is constrained by the importance of maintaining the moral responsibility of military personnel. This is crucial for two reasons: the military's ethical commitments require military personnel to be morally responsible agents, and moral (...) responsibility is necessary for integrity and the moral emotions of guilt and remorse, both of which are important for moral growth and psychological well-being. Enhancements that undermined combatants' moral responsibility would therefore undermine the military's moral standing and would harm combatants' well-being. A genuine commitment to maintaining the military's ethical standards and the well-being of combatants therefore requires a careful analysis of performance-enhancing technologies before they are implemented. (shrink)

The range of opportunities people enjoy in life largely depends on social, biological, and genetic factors for which individuals are not responsible. Philosophical debates about equality of opportunities have focussed mainly on addressing social determinants of inequalities. However, the introduction of human bioenhancement should make us reconsider what our commitment to equality entails. We propose a way of improving morally relevant equality that is centred on what we consider a fair distribution of bioenhancements. In the first part, we identify three (...) main positions in the debate on bioenhancement and equality, and we show how each of them fails to meet the demands of a serious commitment to equality. In the second part, we formulate a new proposal that we think better promotes equality of opportunities: people from disadvantaged socio-economic backgrounds should be given access to bioenhancements while people from privileged socio-economic background should be prohibited from using them. We argue that those who are concerned about the inequality implications of bioenhancement should embrace this solution, rather than reject bioenhancement. (shrink)

Informed by a search of the literature about the usage of genetic testing information (GTI) by insurance companies, this paper presents a practical ethical analysis of several distinct public policy options that might be used to govern or constrain GTI usage by insurance providers. As medical research advances and the extension to the Human Genome Project (2016, https://en.wikipedia.org/wiki/human_genome_project_-_write) moves to its fullness over the next decade, such research efforts will allow the full synthesis of human DNA to be connected to (...) predictive health dispositions. As testing costs fall, there will be ever more pressure for citizens to disclose GTI. Genetic testing information is integral to future medical care because it can be used to better assess individually tailored medical therapies as well as to allow a more informed risk analysis by the insurance industry, which in some countries such as the USA underwrites a majority of citizen medical expenses. As discussed in this examination, the revelation of people’s uniquely personal GTI to insurers has enormous societal implications. The major contribution of the paper is to offer policy makers and concerned citizens a nuanced articulation of the basic options to regulate GTI, with a special consideration for ethical fairness and equity. As genetic-based medicine blossoms and pressures to reduce healthcare costs increase, there will be an ever greater impetus for countries to revisit their genetic testing policies. Organizations and policy makers striving to create GTI oversights perceived to be both “fair and effective” need to be aware of the ethical perspectives discussed in this paper. (shrink)

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk of inheriting (...) a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition. (shrink)

It seems paradoxical to say that an action's normative status ‐ whether it is right, wrong, or obligatory ‐ depends on whether or not it is performed. In this paper, I shall argue that in itself this dependency is not paradoxical. I shall argue that we should not reject a normative theory just because it implies this kind of dependency. Not all dependencies of this kind are bad, or at least not bad enough to warrant wholesale rejection. Instead, we should (...) reject a theory when this dependency makes it a poor guide to action, in particular, when the dependency makes it impossible for agents to comply with the theory. (shrink)

In her recent pamphlet Special Educational Needs: a new look (2005) Mary Warnock has called for a radical review of special needs education and a substantial reconsideration of the assumptions upon which the current educational framework is based. The latter, she maintains, is hindered by a contradiction between the intention to treat all learners as the same and that of responding adequately to the needs arising from their individual differences. The tension highlighted by Warnock, which is central to the debate (...) in special and inclusive education, is also referred to as the ‘dilemma of difference’. This consists in the seemingly unavoidable choice between, on the one hand, identifying children's differences in order to provide for them differentially, with the risk of labelling and dividing, and, on the other, accentuating the ‘sameness’ and offering common provision, with the risk of not making available what is relevant to, and needed by, individual children. In this paper, I argue that the capability approach developed by Amartya Sen provides an innovative and important perspective for re-examining the dilemma of difference in significant ways. In particular, I maintain that reconceptualising disability and special needs through the capability approach makes possible the overcoming of the tension at the core of the dilemma of difference, whilst at the same time inscribing the debate within an ethical, normative framework based upon justice and equality. (shrink)

In his paper The Opposite of Human Enhancement: Nanotechnology and the Blind Chicken problem (Nanoethics 2:305–316, 2008) Paul Thompson argues that the possibility of disenhancing animals in order to improve animal welfare poses a philosophical conundrum. Although many people intuitively think such disenhancement would be morally impermissible, it’s difficult to find good arguments to support such intuitions. In this brief response to Thompson, I accept that there’s a conundrum here. But I argue that if we seriously consider whether creating beings (...) can harm or benefit them, and introduce the non-identity problem to discussions of animal disehancement, the conundrum is even deeper than Thompson suggests. (shrink)

In this paper, I explore the questions of how and to what extent new antidepressants (selective serotonin-reuptake inhibitors, or SSRIs) could possibly affect the self. I do this by way of a phenomenological approach, using the works of Martin Heidegger and Thomas Fuchs to analyze the roles of attunement and embodiment in normal and abnormal ways of being-in-the-world. The nature of depression and anxiety disorders — the diagnoses for which treatment with antidepressants is most commonly indicated — is also explored (...) by way of this phenomenological approach, as are the basic structures of self-being. Special attention is paid in the analysis to the moods of boredom, anxiety and grief, since they play fundamental roles in depression and anxiety disorders and since their intensity and frequency appear to be modulated by antidepressants. My conclusion is that the effect of these drugs on the self can be thought of in terms of changes in self-feeling, or, more precisely, self-vibration of embodiment. I present the idea of a spectrum of bodily resonance, which extends from the normal resonance of the lived body, in which the body is able to pick up a wide range of different moods; continuing over various kinds of sensitivities, preferences and idiosyncrasies, in which certain moods are favored over others; to cases that we unreservedly label pathologies, in which the body is severely out of tune, or even devoid of tune and thus useless as a tool of resonance. Different cultures and societies favor slightly differently attuned self-styles as paradigmatic of the normal and good life, and the popularity of the SSRIs can therefore be explained, not only by defects of embodiment, but also by the presence of certain cultural norms in our contemporary society. (shrink)

Ideas about freedom and related concepts like autonomy and self-determination play a prominent role in the moral debate about human enhancement interventions. However, there is not a single understanding of freedom available, and arguments referring to freedom are simultaneously used to argue both for and against enhancement interventions. This gives rise to misunderstandings and polemical arguments. The paper attempts to disentangle the different distinguishable concepts, classifies them and shows how they relate to one another in order to allow for a (...) more structured and clearer debate. It concludes in identifying the individual underpinnings and the social conditions of choice and decision-making as particularly salient dimensions of freedom in the ethical debate about human enhancement. (shrink)