This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

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)

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)

With increased frequency, reproductive technologies are placing prospective parents in the position of choosing whether to bring a disabled child into the world. The most well-known objection to the act of “selecting against disability” is known as the Expressivist Argument. The argument claims that such acts express a negative or disrespectful message about disabled people and that one has a moral reason to avoid sending such messages. We have two primary aims in this essay. The first is to critically examine (...) the standard Expressivist Argument, which we analyze in terms of the expression of ableist attitudes. We distinguish three interpretations of the argument and argue that each version faces serious objections. Our second aim is to articulate two closely related arguments that also pertain to expressed ableist attitudes. The Expressive Harms Argument maintains that there is a moral reason to avoid actions that give rise to the perception of ableist attitudes in cases where this is likely to have negative consequences for disabled people. The Ableist Motivation Argument speaks against selecting against disability in cases where one would be motivated by ableist attitudes. While these two arguments face various objections, we seek to establish that they are more promising than the most natural interpretations of the Expressivist Argument. (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)

Jeremy Williams has argued that if we are committed to a liberal pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex selective abortion. Here, I apply his reasoning to selective abortion based on other traits pregnant women may decide are undesirable. These include susceptibility to disease, level of intelligence, physical appearance, sexual orientation, religious belief and criminality—in fact any traits attributable to some degree to a genetic component. Firstly, I review (...) Williams’ argument, which claims that if a woman is granted the right to abort based on fetal impairment, then by parity of reasoning she should also be granted the right to choose sex selective abortion. I show that these same considerations that entail the permissibility of sex selective abortion are also applicable to genetic selection abortion. I then examine the objections to sex selective abortion that Williams considers and rejects, and show that they also lack force against genetic selection abortion. Finally, I consider some additional objections that might be raised, and conclude that a liberal pro-choice stance on selective abortion for disability entails the permissibility of selective abortion for most genetic traits. (shrink)

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

The transhumanist movement is much more than a simple utopia, a new school of thought or a fashionable ideology; as a matter of fact, it is a scientific and philosophical project that is already underway, and defends the use of the most advanced emerging new technologies —from biogenetics to computing, from nanotechnology to cognitive sciences, to robotics and Artificial Intelligence— with the clear goal to exponentially increase the physical, cognitive, sensory, moral and emotional capabilities of human beings. Transhumanism entails a (...) change in the anthropocentric paradigm defended by humanism, and aims to break through the limits of nature, which until recently we deemed insurmountable, in order to create a new species that is more evolved than the Homo sapiens: the Homo excelsior, a posthuman species which is superior to ours, composed by exceptionally gifted beings that have been genetically selected, designed and improved and which —according to the transhumanist imaginary— will dominate the posthuman future and will be happier, more virtuous, long-lived and intelligent than us. In this article, we propose technological humanism as an intermediate formula in the doctrinal debate between bioprogressive and bioconservative legal philosophers, so as to make possible the development of scientific research and the advancement of new technologies, although without ever having to sacrifice dignity and liberty, which are inherent qualities of the human being (who has to be viewed, in Kantian terms, as an end in itself). Received: 22 May 2019 Accepted: 10 September 2019 Published online: 20 December 2019. (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)

In 2015 a team of scientists used a new gene-editing technique called CRISPR-Cas9 to edit the genome of 86 non-viable human embryos. The experiment sparked a global debate on the ethics of gene editing. In this paper; I first review the key ethical issues that have been addressed in this debate. Although there is an emerging consensus now that research on the editing of human somatic cells for therapeutic purpose should be pursued further; the prospect of using gene-editing techniques for (...) the purpose of human enhancement has been met with strong criticism. The main thesis that I defend in this paper is that some of the most vocal objections recently raised against the prospect of genetic human enhancement are not justified. I put forward two arguments for the morality of genetic human enhancement. The first argument shows how the moral and legal framework within which we currently claim our procreative rights; especially in the context of IVF procedures; could be deployed in the assessment of the morality and legality of genetic human enhancement. The second argument calls into question the assumption that the average level of human cognitive performance should have a normative character. (shrink)

This paper aims at answering some of the objections to the NIP’s criticism of the idea of rights of future persons. Those objections usually adopt different perspectives depending on how they understand differently the nature of the correlativity between rights and duties – some adopt a present-rights-of-future-persons view, others a future-rights-of-future-persons view, others a transitive present-rights-of-present-persons view, and others still an eternalist view of rights and persons. The paper will try to show that only a non-transitive present-rights-of-present-persons view can survive (...) the challenges posed by the notion of correlativity inherent in the NIP, and thus preserve rights language when discussing the future. This view is proved also more suitable for the legal and political realms, where policies and law-making are usually more concerned with present addressees and short term effects. (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)

This paper presents an overview of the key ethical questions of performing gene editing research on military service members. The recent technological advance in gene editing capabilities provided by CRISPR/Cas9 and their path towards first-in-human trials has reinvigorated the debate on human enhancement for non-medical purposes. Human performance optimization has long been a priority of military research in order to close the gap between the advancement of warfare and the limitations of human actors. In spite of this focus on temporary (...) performance improvement, biomedical enhancement is an extension of these endeavours and the ethical issues of such research should be considered. In this paper, we explore possible applications of CRISPR to military human gene editing research and how it could be specifically applied towards protection of service members against biological or chemical weapons. We analyse three normative areas including risk–benefit analysis, informed consent, and inequality of access as it relates to CRISPR applications for military research to help inform and provide considerations for military institutional review boards and policymakers. (shrink)

Citizens in wealthy liberal democracies are typically expected to see to basic needs like food, clothing, and shelter out of their own income, and those without the means to do so usually receive assistance in the form of cash transfers. Things are different with health care. Most liberal societies provide their citizens with health care or health care insurance in kind, either directly from the state or through private insurance companies that are regulated like public utilities. Except perhaps for small (...) co-pays or deductibles, citizens are not expected to see to their health needs out-of-pocket, at least for some basic level of care. Instead, when a citizen gets sick, the state or her insurance company foots the... (shrink)

This essay defends the controversial and indeed counterintuitive claim that there is a good argument to be made from a Lockean perspective for government action to guarantee access to health care. The essay maintains that this argument is in some regards more robust than the well-known argument in defense of universal health care spelled out by Norman Daniels, which this essay also examines in some detail. Locke's view that government should protect people's lives, property, and freedom–where freedom is understood as (...) independence and self-determination–justifies government action to ensure access to health care, because (roughly), just as individuals cannot protect themselves from crime and foreign invasion, so individuals are unable to provide for their own health care. Defense from disease is as important as defense from crime, and–although this is arguable–government action to guarantee access to health care does not itself undermine freedom. (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.

Placebos are often used by clinicians, usually deceptively and with little rationale or evidence of benefit, making their use ethically problematic. In contrast with their typical current use, a provocative line of research suggests that placebos can be intentionally exploited to extend analgesic therapeutic effects. Is it possible to extend the effects of drug treatments by interspersing placebos? We reviewed a database of placebo studies, searching for studies that indicate that placebos given after repeated administration of active treatments acquire medication-like (...) effects. We found a total of 22studies in both animals and humans hinting of evidence that placebos may work as a sort of dose extender of active painkillers. Wherever effective in relieving clinical pain, such placebo use would offer several advantages. First, extending the effects of a painkiller through the use of placebos may reduce total drug intake and side effects. Second, dose-extending placebos may decrease patient dependence. Third, using placebos along with active medication, for part of the course of treatment, should limit dose escalation and lower costs. Importantly, provided that nondisclosure is pre-authorized in the informed consent process and that robust evidence indicates therapeutic benefit comparable to that of standard full-dose therapeutic regimens, introducing dose-extending placebos into the clinical arsenal should be considered. This novel prospect of placebo use has the potential to change our general thinking about painkiller treatments, the typical regimens of painkiller applications, and the ways in which treatments are evaluated. (shrink)

Analytic philosophers tend to agree that intentional parental genetic shaping and intentional parental environmental shaping for the same feature are, normatively, on a par. I challenge this view by advancing a novel argument, grounded in the value of fair relationships between parents and children: Parental genetic shaping is morally objectionable because it unjustifiably exacerbates the asymmetry between parent and child with respect to the voluntariness of their entrance into the parent–child relationship. Parental genetic shaping is, for this reason, different from (...) and more objectionable than parental environmental shaping. I introduce a distinction between procreative decisions one makes qua mere procreator—that is, without the intention to rear the resulting child—and procreative decisions one makes qua procreator-and-future childrearer. Genetic shaping is objectionable when undertaken in the latter capacity: Both selection and enhancement are objectionable because they introduce an unnecessary and avoidable inequality in the parent–child relationship; in the case of enhancement, this also results in harm to the future child. (shrink)

Background and objectives: Summary measures of overall health inequality are independent of group membership and enable international comparisons of distribution of health. We compare inequality between and within countries over time and identify normative issues underlying such comparisons. Methods: We used a set of modeled historical life tables for 193 World Health Organization member states from the years 1990, 2000 and 2008 and calculated inequality in age at death and inequality-adjusted life expectancy. Results: Our calculations suggest that overall health inequalities (...) in age at death have been decreasing in the period 1990–2008 in most countries of the world. Only 20 countries experienced increasing distribution in age at death. Simultaneously, overall life expectancy has increased in 85 per cent of all countries. Thus, the combined measure IALE has improved globally. The same overall trend of reduced health inequality applies to all groups of countries stratified by income level. Conclusion: Overall health inequalities, in addition to average health outcomes, could be reported regularly to monitor the health status of populations and the performance of health systems. We find, on normative grounds, the combined measure IALE to be preferable to measuring trends in inequality only. Likewise, we find the Absolute GiniH to be preferable to Relative GiniH. (shrink)

Many instances of parental enhancement are objectionable on egalitarian grounds because they unnecessarily amplify one kind of asymmetry of power between parents and children. Because children have full moral status, we ought to seek egalitarian relationships with them. Such relationships are compatible with asymmetries of power only to the extent to which the asymmetry is necessary for (1) advancing the child's level of advantage up to what justice requires or (2) instilling in the child morally required features. This is a (...) ground to oppose parental enhancements whose purpose is either to merely satisfy parents' preferences or to confer on the child advantages above and beyond what the child is owed by justice. (shrink)

The issue of whether biological and psychological properties associated with disability can be harmful, beneficial, or neutral brings up an important philosophical question about how we evaluate disability, and disability’s impact on well-being. The debate is usually characterized as between those who argue disability is intrinsically harmful, and disability rights advocates who argue that disability is just another way of being different, in part, because disability can also provide important benefits. I argue that this debate is a false one, as (...) neither view can capture the more complicated relationship between disability and well-being. I argue that many disabilities are best understood as a kind of pro-tanto extrinsic harm that is characterized in counterfactual terms. This means that our judgments concerning disability and harm must be context-sensitive. (shrink)

Many hold that distributing healthcare according to medical need is a requirement of equality. Most egalitarians believe, however, that people ought to be equal on the whole, by some overall measure of well-being or life-prospects; it would be a massive coincidence if distributing healthcare according to medical need turned out to be an effective way of promoting equality overall. I argue that distributing healthcare according to medical need is important for reducing individuals' uncertainty surrounding their future medical needs. In other (...) words, distributing healthcare according to medical need is a natural feature of healthcare insurance; it is about indemnity, not equality. (shrink)

In recent work, Andrew T. Forcehimes and Robert B. Talisse correctly note that G.A. Cohen’s fact-insensitivity thesis, properly understood, is explanatory. This observation raises an important concern. If fact-insensitive principles are explanatory, then what role can they play in normative deliberations? The purpose of my paper is, in part, to address this question. Following David Miller, I indicate that on a charitable understanding of Cohen’s thesis, an explanatory principle explains a justificatory fact by completing an otherwise logically incomplete inference. As (...) a result, the explanatory role such a principle plays is inseparable from its status as a (not necessarily successful) justificatory reason. With this interpretation in hand, I then proceed to argue that Lea Ypi’s and Robert Jubb’s recent criticisms fail to undermine Cohen’s thesis, and that fact-insensitive principles, once discovered, are especially helpful for purposes of deliberation in circumstances characterized by changing and changeable feasibility constraints. (shrink)

Philosophers concerned with procreative ethics have long been puzzled by Parfit’s Non-Identity Problem (NIP). Various solutions have been proposed, but I argue that we have not solved the problem on its own narrow person-affecting terms, i.e., in terms of the identified individuals affected by procreative decisions and acts, especially future children. Thus, the core problem remains unsolved. This is a nagging concern for all who hold the common intuition that actions that harm no one are permissible. I argue against Harmon’s (...) and Woodward’s direct, narrow person-affecting solutions, and in favor of a new solution to the NIP. My solution, or, rather, dissolution, is based on the argument that merely possible people, i.e., hypothetical people who could possibly, but will not actually, exist, are morally irrelevant. I show that the NIP only arises when we concern ourselves with merely possible people. Once we are careful to restrict our concerns to only those that do or will exist, the NIP is dissolved. (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)

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

In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...) advance the debate about these technologies by becoming more aware of the ways in which this debate is itself in part a political contestation over this relationship. Ultimately, I will argue, the real force of the expressivist objection lies in its capacity to draw our attention to political questions about the role of the state and about relationships between different social groups rather than between parents and prospective children. That is to say, crucial issues, when evaluating the force of this criticism, turn out to be: the nature of the institutions which determine how decisions about prenatal selection are made; and how we think of each other, that is, what we take to be the defining characteristics of human beings. Paradoxically, arguments about the ethics of the “sorting society”, both supportive and critical, are an important arena in which these institutions and these ideas about identity are contested and shaped. An increased awareness of the reflexive nature of the process of debating these issues may assist us in better negotiating them. (shrink)

Some say moral bioenhancements are urgent and necessary; others say they are misguided or simply will not work. I examine a class of arguments claiming that moral bioenhancements are problematic because they are self-subverting. On this view, trying to make oneself or others more moral, at least through certain means, can itself be immoral, or at least worse than the alternatives. The thought here is that moral enhancements might fail not for biological reasons, but for specifically morally self-referential reasons. I (...) argue that moral bioenhancements, in a restricted set of cases, are self-subverting such that they are impermissible. Further, some moral bioenhancements would result in agents who are less admirable than they might have been through other means. (shrink)

This paper argues that luck egalitarianism, especially in the guise of equality of opportunity for welfare, is in tension with the ideal of fair equality of opportunity in three ways. First, equal opportunity for welfare is compatible with a caste system in employment that is inconsistent with open competition for positions. Second, luck egalitarianism does not support hiring on the basis of qualifications. Third, amending luck egalitarianism to repair this problem requires abandoning fair access to qualifications. Insofar as luck egalitarianism (...) cannot support fair equality of opportunity, it cannot do justice to the claims of the disabled. Indeed, in the absence of fair equality of opportunity, disabled people are likely to be marginalized. (shrink)

The identification and avoidance of disease susceptibility in embryos is the most common goal of preimplantation genetic diagnosis (PGD). Most jurisdictions that accept but regulate the availability of PGD restrict it to what are characterized as ‘serious’ conditions. Line-drawing around seriousness is not determined solely by the identification of a genetic mutation. Other factors seen to be relevant include: impact on health or severity of symptoms; degree of penetrance (probability of genotype being expressed as a genetic disorder); potential for therapy; (...) rate of progression; heritability; and age of onset. In the original applications of PGD, most, if not all of these factors were seen as necessary but none was seen as sufficient for determining whether a genetic condition was labelled ‘serious’. This, however, is changing as impact on health or severity of symptoms is coming to eclipse the other considerations. This paper investigates how age of onset (primarily in the context of the United Kingdom (UK)) has become considerably less significant as a criterion for determining ethically acceptable applications of PGD. Having moved off the threshold of permitting PGD testing for only fatal (or seriously debilitating), early-onset diseases, I will investigate reasons for why age of onset will not do any work to discriminate between which adult-onset diseases should be considered serious or not. First I will explain the rationale underpinning age of onset as a factor to be weighed in making determinations of seriousness. Next I will challenge the view that later-onset conditions are less serious for being later than earlier-onset conditions. The final section of the paper will discuss some of the broader disability concerns at stake in limiting access to PGD based upon determinations of the ‘seriousness’ of genetic conditions. Instead of advocating a return to limiting PGD to only early-onset conditions, I conclude that the whole enterprise of trying to draw lines of what is to count as a ‘serious’ condition is itself problematic and in certain ways morally misleading. (shrink)

The ongoing revolution in molecular genetics has led many to speculate that one day we will be able to change the expression or phenotype of numerous complex traits to improve ourselves in many different ways. The prospect of genetic enhancements has generated heated controversy, with proponents advocating research and implementation, with caution advised for concerns about justice, and critics tending to see the prospect of genetic enhancements as an assault on human freedom and human nature. Both camps base their arguments (...) on the unquestioned assumption that the science will realize either their dreams or nightmares. In this paper, I show that their beliefs are based upon two fundamental mistakes. First, they are based upon an unwarranted reliance in a genetic determinism that takes for granted that the traits that we might most want to enhance, like intelligence, aggression, shyness, and even athletic ability, can be causally directed by specific genes. In so doing, character descriptions are reified to be concrete and discrete entities, in this case, genes. Second, they have accepted on faith that there is, or will be, a science to translate their hopes or worries into reality when, in fact, that is unlikely to occur because of the irreducible complexity of phenotypic expression. (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)

Breeders of purebred dogs usually have several goals they want to accomplish, of which canine wellbeing is one. The purpose of this article is to investigate what we ought to do given this goal. Breeders typically think that they fulfil their wellbeing-related duties by doing the best they can within their breed of choice. However, it is true of most breeders that they could produce physically and mentally healthier dogs if they switched to a healthier breed. There are a few (...) breeds that are healthier than other breeds as well as mutts; we could maximize wellbeing for the next generations by focusing all our breeding resources on those. However, in the long run such a strategy would severely deplete the canine gene pool. If we are to breed for wellbeing in the long run, we must thus weigh the benefits of selection against physical and mental problems against the benefits of genetic diversity. The optimal breeding strategy for canine wellbeing is to preserve many breeds, though not all of them. Furthermore, we ought to combine strict health programs with looser barriers between breeds. Such a policy conflicts with the goal of breed preservation, at least if we think of breeds as populations registered within kennel clubs rather than types of dogs, but not with the goal of producing good working dogs capable of performing various tasks. (shrink)

Norman Daniels’s theory of health justice is the most comprehensive and systematic such theory we have. In one of the few articles published so far on Daniels’s new book, Just Health, Benjamin Sachs argues that Daniels’s core “principle of equality of opportunity does not do the work Daniels needs it to do.” Yet Sachs’s objections to Daniels’s framework are deeply flawed. Where these arguments do not rely on significant misreadings of Daniels, they ignore sensible strands in Just Health that considerably (...) dull their force. After disarming Sachs’s arguments against Daniels’s theory, I explain why I agree with Sachs’s conclusion: Daniels’s equality of opportunity-based account of health justice rests on shaky foundations. (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)

The non-identity problem arises when an intervention or behavior changes the identity of those affected. Delaying pregnancy is an example of such a behavior. The problem is whether and in what ways such changes in identity affect moral considerations. While a great deal has been written about the non-identity problem, relatively little has been written about the implications for physicians and how they should understand their duties. We argue that the non-identity problem can make a crucial moral difference in some (...) circumstances, and that it has some interesting implications for when it is or is not right for a physician to refuse to accede to a patient's request. If a physician is asked to provide an intervention (identity preserving) that makes a person worse off, then such harm provides a good reason for the physician to refuse to provide the intervention. However, in cases where different (identity-altering) interventions result in different people having a better or worse life, physicians should normally respect patient choice. (shrink)

Biomedical technologies can increasingly be used not only to combat disease, but also to augment the capacities or traits of normal, healthy people – a practice commonly referred to as biomedical enhancement. Perhaps the best‐established examples of biomedical enhancement are cosmetic surgery and doping in sports. But most recent scientific attention and ethical debate focuses on extending lifespan, lifting mood, and augmenting cognitive capacities.

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)

A recent study by Castellani et al. (JAMA 302(23):2573–2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (2) (...) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs. (shrink)

Advances in the understanding of genetics have led to the belief that it may become possible to use genetic engineering to manipulate the DNA of humans at the embryonic stage to produce certain desirable traits. Although this currently cannot be done on a large scale, many people nevertheless object in principle to such practices. Most often, they argue that genetic enhancements would harm the children who were engineered, cause societal harms, or that the risks of perfecting the procedures are too (...) high to proceed. However, many of these same people do not have serious objections to what is called ‘genetic planning’ procedures (such as the selection of sperm donors with desirable traits) that essentially have the same ends. The author calls the view that genetic engineering enhancements are impermissible while genetic planning enhancements are permissible the ‘popular view’, and argues that the typical reasons people give for the popular view fail to distinguish the two practices. This paper provides a principle that can salvage the popular view, which stresses that offspring from genetic engineering practices have grounds for complaint because they are identical to the pre-enhanced embryo, whereas offspring who are the result of genetic planning have no such grounds. (shrink)

The potential for genetic engineering of enhancements to complex human traits has been the subject of vigorous debate for a number of years. Most of the discussion has centered on the possible moral consequences of pursuing enhancements, especially those that might affect complex behaviours and components of personality. Little has been written on the actual process of implementing this technology. This paper presents a ‘thought experiment’ about the likely form of final preclinical testing for a technology to enhance intelligence as (...) a prototypical multiplex trait. The significance and the potential dangers of implementing enhancements in humans, especially to highly valued traits such as intelligence, would mandate a thorough programme of testing in animals, including non-human primates such as chimpanzees. The implications this would have for researchers, society and, most importantly, the animals themselves are discussed, and the paper concludes with a suggestion for a morally justifiable approach to resolve the tragic question of what to do with research animals who have a cognitive capacity that is close to that of humans. (shrink)

Genomics provides information on genetic susceptibility to diseases and new possibilities for interventions which can fundamentally alter the design of fair health policies. The aim of this paper is to explore implications of genomics from the perspective of equal opportunity ethics. The ideal of equal opportunity requires that individuals are held responsible for some, but not all, factors that affect their health. Informational problems, however, often make it difficult to implement the ideal of equal opportunity in the context of healthcare. (...) In this paper, examples are considered of how new genetic information may affect the way individual responsibility for choice is assigned. It is also argued that genomics may result in relocation of the responsibility cut by providing both new information and new technology. Finally, how genomics may affect healthcare policies and the market for health insurance is discussed. (shrink)