Human embryos produced in labs since the 1970s have generated layers of uncertainty for law and policy: ontological, moral, and administrative. Ontologically, these lab-made entities fall into a gray zone between life and not-yet-life. Should in vitro embryos be treated as inanimate matter, like abandoned postsurgical tissue, or as private property? Morally, should they exist largely outside of state control in the zone of free reproductive choice or should they be regarded as autonomous human lives and thus entitled to constitutional (...) protection like full-fledged citizens? Administratively, if they deserve protection, what institutional and policy mechanisms are best suited to carrying out the necessary oversight? Using a method termed comparative problematization, this article traces divergent answers to these questions produced in three countries—the United States, United Kingdom, and Germany—across the last twenty-five years. Comparison reveals distinct bioconstitutional foundations that give rise to systematically different understandings of each state’s responsibilities toward human life and hence its particular treatment of claims on behalf of embryonic lives. (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)

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)

In this paper, I will present the empirical version of the slippery slope argument (SSA) in the field of genome editing. According to the SSA, if we adopt germline manipulation of embryos we will eventually end up performing or allowing something morally reprehensible, such as new coercive eugenics. I will investigate the actual possibility of sliding towards eugenics: thus, I will examine enhancement and eugenics both in the classical and liberal versions, through the lens of SSA. In the first part, (...) I will discuss the classical eugenics from a historical perspective and conclude that classical eugenics is morally deplorable; but by currently accepting genome editing I argue that it is not possible to ‘slip’ into classical eugenics. Then, I will analyze liberal eugenics: I will consider Habermas’ and Sandel’s objections to liberal eugenics and genetic human enhancement. Subsequently, I will reply to these arguments affirming that, although it is not possible to refuse any form of genetic enhancement, liberal eugenics would not consider the principles of justice, non-maleficence, and non-instrumentalization; hence, it should be considered not morally acceptable. In addition, I will support the thesis according to which the possibility of relapsing into liberal eugenics is more likely than relapsing into classical eugenics. Then, I will present a strategy that, while avoiding falling into the undesirable scenarios related to SSA, still accepts some application of germline genome editing of embryos and gametes. In such a way, I will show that even if we accept the plausibility of a certain slip into an undesirable scenario, SSA does not offer conclusive reasons to forbid any use of germline genome editing technique in both therapeutic and enhancement fields. (shrink)

Comparisons between germline gene editing using CRISPR technology and a renewal of eugenics are evident in the current bioethical discussions. This article examines the different roles of such references to the past. In the first part, the alleged parallels between gene editing of the germline and eugenics are addressed from three perspectives: First, the historical adequacy of such comparisons is questioned. Second, it is asked whether the evils of the past can in fact be attributed to (future) practices of germline (...) gene editing. Third, it is discussed whether the alleged hazards of eugenics should in fact universally be condemned from a moral perspective. The article attempts to show that references to the eugenic past to rebut gene editing are highly selective and should be abandoned to allow for a more transparent ethical discourse. While the comparison with a eugenic past is frequently drawn by opponents of germline gene editing, the remaining part of this article investigates historic references from the proponents of germline gene editing. It is argued that they also employ different narratives of the past to justify their own liberal position. While such references are equally problematic, some lessons from the history of eugenics will be spelled out that can inform future debates on germline gene editing. (shrink)

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

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)

This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenatal testing. Given that such testing is likely to become the norm, it is important to question whether there should be some ethical parameters regarding its use. The article engages with the viewpoints of Jeff McMahan, Julian Savulescu, Stephen Wilkinson and other commentators on prenatal ethics. The authors argue that there are a variety of moral considerations that legitimately play a significant role with regard to (prospective) parental decision-making (...) in the context of NIPT, for example, views on the morality of abortion and understandings of the impact of disability on quality of life. The variable nature of such considerations, both singularly and combined, suggests that any approach to NIPT should be sensitive to and understanding of similarly variable parental assessments and decisions. The implications of the approach developed for current and future policies in this area are explored, along with the impact of such arguments on ideas about procreative beneficence. (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 develops an analysis of disability according to which disabling conditions are properties of organisms embedded in sets of environments. We begin by presenting the three mainstream accounts of disability—the medical, social, and interactionist models—and rehearsing some known limitations. We argue that, because of their primary focus on etiology, all three models share, more or less implicitly, a problematic assumption. This is the tenet that disabilities are individual properties. The second part of the essay presents an “ecological” interpretation of (...) disability, inspired by classic and contemporary research on biological niches. Our proposal preserves many insights underlying extant approaches, while allowing a more accurate characterization of the nature and experience of disability. We conclude by drawing some general implications of our analysis. (shrink)

The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to (...) identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates. (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 the near future we may be able to manipulate human embryos through genetic intervention. Jürgen Habermas has argued against the development of technologies which could make such intervention possible. His argument has received widespread criticism among bioethicists. These critics argue that Habermas's argument relies on implausible assumptions about human nature. Moreover, they challenge Habermas's claim that genetic intervention adds something new to intergenerational relationships pointing out that parents have already strong control over their children through education. In this paper (...) a new approach to Habermas's theory is suggested which makes clear that he has a strong point against genetic intervention. A more charitable reading of Habermas with respect to his assumptions concerning human nature is presented. Moreover, Habermas's assumption concerning the power of genetic controlling is evaluated. By means of a close comparison of genetic and educational control it is shown that Habermas's argument relies on much weaker assumptions than generally understood. (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)

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)

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)

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)

This paper discusses the concept of “human disenhancement”, i.e. the worsening of human individual abilities and expectations through technology. The goal is provoking ethical reflection on technological innovation outside the biomedical realm, in particular the substitution of human work with computer-driven automation. According to some widely accepted economic theories, automatization and computerization are responsible for the disappearance of many middle-class jobs. I argue that, if that is the case, a technological innovation can be a cause of “human disenhancement”, globally, and (...) all things considered, even when the local and immediate effect of that technology is to increase the demand of more sophisticated human skills than the ones they substitute. The conclusion is that current innovations in the ICT sector are objectionable from a moral point of view, because they disenhance more people than they enhance. (shrink)

In contemporary debates about justice, political philosophers take themselves to be engaged with a subject that’s narrower than the whole of morality. Many contemporary liberals, notably John Rawls, understand this narrowness in terms of context specificity. On their view, justice is the part of morality that applies to the context of a society’s institutions, but only has indirect application to the context of citizens’ personal lives. In contrast, many value pluralists, notably G.A. Cohen, understand justice’s narrowness in terms of singularity (...) against a plural background. On their view, justice is one fundamental value amongst a plurality of fundamental values. The purpose of my thesis is to establish that the pluralist conception of justice’s narrowness is theoretically significant and true. To establish its theoretical significance, I argue that proper attention to the ways in which different understandings of narrowness inform the work of contemporary egalitarians explains a considerable amount of disagreement between them concerning the content and scope of distributive justice. On the one hand, I’ll argue that if we understand justice’s narrowness in the manner Cohen and other pluralists do, i.e., understand a conception of justice to be a conception of a particular fundamental value, then both luck-egalitarianism and the claim that justice extends to the personal context are compelling. On the other hand, I’ll argue that if we understand justice’s narrowness in a contextual manner, i.e., understand justice to comprise one or more all-things-considered principles adopted for the institutional context, then both luck-egalitarianism and the claim that justice extends to the personal context prove implausible. To establish the truth of the pluralist conception of narrowness, I argue first, that the contextual understanding is only plausible if fairness should be understood procedurally instead of substantively; and second, that substantive fairness cannot be eliminated, as specifying the content of procedural fairness requires a substantive criterion. The upshot is that justice’s narrowness is best understood in terms of singularity against a plural background, rather than in terms of context specificity. (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)

This chapter concerns the normativity of the concepts of paternalism and libertarian paternalism. The first concept is central in evaluating public health policy, but its meaning is controversial. The second concept is equally controversial and has received much attention recently. It may or may not shape the future evaluation of public health policy. In order to facilitate honest and fruitful debate, I consider three approaches to these concepts, in terms of their normativity. Concepts, I claim, may be considered nonnormative, normatively (...) charged, or normative in that they involve more complex relationships between values or duties. While the last approach is often best, other approaches may be appropriate depending on the context and purpose of discussion. The chapter’s conceptual investigation is illustrated by application to two public health policies: a tax on the consumption of fat and the encouragement of health-promoting food displays in restaurants and supermarkets. (shrink)

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)

ZusammenfassungDie Frage nach der Gerechtigkeit im Gesundheitswesen wird aus der Perspektive einer allgemeinen Theorie der Gerechtigkeit betrachtet. Diese Theorie ist ein Befähigungsansatz, der zwischen 1) der Grundversorgung aller Bürger mit Grundbefähigungen, 2) einem gerechten Anteil an den Früchten gesellschaftlicher Kooperation und 3) individuell erstrebten Gütern und Leistungen differenziert. Die Anwendung dieser Theorie reagiert auf charakteristische Probleme der Allokation im Gesundheitssektor: den prinzipiell ungedeckten Bedarf, die mangelnde Zurechenbarkeit des Bedarfes und die asymmetrische Informationsstruktur zwischen Patienten und Leistungserbringern.

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)

In this article we examine four objections to the genetic modification of human beings: the freedom argument, the giftedness argument, the authenticity argument, and the uniqueness argument. We then demonstrate that each of these arguments against genetic modification assumes a strong version of genetic determinism. Since these strong deterministic assumptions are false, the arguments against genetic modification, which assume and depend upon these assumptions, are therefore unsound. Serious discussion of the morality of genetic modification, and the development of sound science (...) policy, should be driven by arguments that address the actual consequences of genetic modification for individuals and society, not by ones propped up by false or misleading biological assumptions. (shrink)

Die Frage nach der Gerechtigkeit im Gesundheitswesen wird aus der Perspektive einer allgemeinen Theorie der Gerechtigkeit betrachtet. Diese Theorie ist ein Befähigungsansatz, der zwischen 1) der Grundversorgung aller Bürger mit Grundbefähigungen, 2) einem gerechten Anteil an den Früchten gesellschaftlicher Kooperation und 3) individuell erstrebten Gütern und Leistungen differenziert. Die Anwendung dieser Theorie reagiert auf charakteristische Probleme der Allokation im Gesundheitssektor: den prinzipiell ungedeckten Bedarf, die mangelnde Zurechenbarkeit des Bedarfes und die asymmetrische Informationsstruktur zwischen Patienten und Leistungserbringern.

The aim of this paper is to analyze the treatment/enhancement distinction as employed by those against using the newest biomedical technologies for purposes other than those strictly curative. First, we analyze the most common definitions related to treatment, such as health, disease or medicine, showing their limitations and problems. Secondly, we consider three different tasks usually assigned to the treatment/enhancement distinction: 1) to establish what we owe to others, 2) to establish what should be included as part of a medical (...) insurance system and 3) to distinguish the morally permissible from the morally impermissible. We conclude that the treatment/enhancement distinction is a useful, if limited, tool for the first two tasks, but an inadequate one for the third. (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)

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)

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.

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)

This paper argues that, if we are committed to a Pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex-selective abortion (SSA), for two reasons. First, familiar Pro-choice arguments in favour of a woman’s right to select against fetal impairment also support, by parity of reasoning, a right to choose SSA. Second, rejection of the criticisms of selective abortion for disability levelled by disability theorists also disposes, by implication, of the key (...) objections to SSA, as developed, most notably, by feminists. The paper, then, consists of a conditional defence of SSA, under which SSA should be available, and protected by a right, if selective abortion for disability is. Opponents of SSA might respond by conceding additional restrictions on selection against disabled fetuses. It should become clear throughout the paper, however, that any such new restrictions would be unacceptably onerous for women. (shrink)

The principle of fair equality of opportunity is regularly used to justify social policies, both in the philosophical literature and in public discourse. However, too often commentators fail to make explicit just what they take the principle to say. A principle of fair equality of opportunity does not say anything at all until certain variables are filled in. I want to draw attention to two variables, timing and currency. I argue that once we identify the few plausible ways we have (...) at our disposal for filling in those variables, it will become apparent that a reasonable version of the principle will be quite narrow. Its usefulness as a justificatory basis for social policies will be limited to those policies that target the distribution of competitive opportunities among people entering majority. (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)

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)

In this article, transhumanism is considered to be a quasi-medical ideology that seeks to promote a variety of therapeutic and human-enhancing aims. Moderate conceptions are distinguished from strong conceptions of transhumanism and the strong conceptions were found to be more problematic than the moderate ones. A particular critique of Boström’s defence of transhumanism is presented. Various forms of slippery slope arguments that may be used for and against transhumanism are discussed and one particular criticism, moral arbitrariness, that undermines both weak (...) and strong transhumanism is highlighted. (shrink)

‘Liberal eugenics’ has emerged as the most popular position amongst philosophers writing in the contemporary debate about the ethics of human enhancement. This position has been most clearly articulated by Nicholas Agar, who argues that the ‘new’ liberal eugenics can avoid the repugnant consequences associated with eugenics in the past. Agar suggests that parents should be free to make only those interventions into the genetics of their children that will benefit them no matter what way of life they grow up (...) to endorse. I argue that Agar's attempt to distinguish the new from the old eugenics fails. Once we start to consciously determine the genetics of future persons, we will not be able to avoid controversial assumptions about the relative worth of different life plans. Liberal eugenicists therefore confront the horns of a dilemma. Whichever way they try to resolve it, the consequences of widespread use of technologies of genetic selection are likely to look more like the old eugenics than defenders of the new eugenics have acknowledged. (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)

Until now, philosophical debate about human embryonic stem cell (hESC) research has largely been limited to its ethical dimensions and implications. Although the importance and urgency of these ethical debates should not be underestimated, the almost undivided attention that mainstream and feminist philosophers have paid to the ethical dimensions of hESC research suggests that the only philosophically interesting questions and concerns about it are by and large ethical in nature. My argument goes some distance to challenge the assumption that ethical (...) considerations alone must be foregrounded in philosophical discussions about hESC research by introducing a critical stance on the epistemological and ontological assumptions that underlie and condition it. A central aim of the paper is to show how Foucault's insights into knowledge-power, taken in combination with Hacking's claims about styles of reasoning, can make these assumptions evident, as well as cast light on their potentially deleterious implications for disabled people. Arguing in this way also enables me to draw out constitutive effects of research on stem cells, that is, to indicate how the discursive practices surrounding research on stem cells, as well as the technology itself, contribute to the constitution of impairment. (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)

Much work in contemporary bioethics defends a broadly liberal view of human reproduction. I shall take this view to comprise (but not to be exhausted by) the following four claims.1 First, it is permissible both to reproduce and not to reproduce, either by traditional means or by means of assisted reproductive techniques such as IVF and genetic screening. Second, it is permissible either to reproduce or to adopt or otherwise foster an existing child to which one is not biologically related. (...) Third, it is permissible either to bring into existence a child with the greatest chance of a life of maximum human flourishing or to bring into existence a child with a life worth living but with less than the greatest chance of a life of maximum human flourishing. Fourth, it is impermissible to bring into existence a child whose life is either certain or likely to fall below some baseline of a human life minimally worth living. (shrink)