This paper applies aspects of Hugo Grotius's theologically informed theory of property to contemporary issues concerning access to the human DNA sequence and patenting practices. It argues that Christians who contribute to public debate in these areas might beneficially employ some of the concepts with which he worked--notably "common right," the "right of necessity," and "use right." In the seventeenth century, wars were fought over trading rights and access to the sea. In the twenty-first century, information and intellectual property are (...) the issues of the day. Grotius's writings serve to correct the overemphasis in modern liberalism on individual rights, and have practical application to the debate concerning the reduction of the human genome to the status of private property. (shrink)

Volume 19, Issue 7, July 2019, Page 45-47.

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)

Three of the articles included in this issue of the Journal of Medicine and Philosophy - Ron Amundson and Shari Tresky's "On a Bioethical Challenge to Disability Rights"; Rachel Cooper's "Can It Be a Good Thing to Be Deaf?"; and Mark T. Brown's "The Potential of the Human Embryo" - interact (in various ways) with the concepts of disability, humanity, and personhood and their normative dimensions. As one peruses these articles, it becomes apparent that terms like "disability," "human being," and (...) "person" carry with them great normative significance. There is, however, much disagreement concerning both the definition and the extension of such terms. This is significant because different terms and definitions are associated with different sets of normative requirements. In what follows we reconstruct the argument of each of the articles, and then offer some brief critical analysis intended to stimulate further thought about and discussion of the issues that each raises. (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)

Liberal proponents of genetic engineering maintain that developing human germline modification technologies is morally desirable because it will result in a net improvement in human health and well-being. Skeptics of germline modification, in contrast, fear evolutionary harms that could flow from intervening in the human germline, and worry that such programs, even if well intentioned, could lead to a recapitulation of the scientifically and morally discredited projects of the old eugenics. Some bioconservatives have appealed as well to the value of (...) retaining our “given” human biological nature as a reason for restraining the development and use of human genetic modification technologies even where they would tend to increase well-being. In this article, I argue that germline intervention will be necessary merely to sustain the levels of genetic health that we presently enjoy for future generations—a goal that should appeal to bioliberals and bioconservatives alike. This is due to the population-genetic consequences of relaxed selection pressures in human populations caused by the increasing efficacy and availability of conventional medicine. This heterodox conclusion, which I present as a problem of intergenerational justice, has been overlooked in medicine and bioethics due to certain misconceptions about human evolution, which I attempt to rectify, as well as the sordid history of Darwinian approaches to medicine and social policy, which I distinguish from the present argument. (shrink)

Julian Savulescu has given clear expression to a principle—that of “procreative beneficence”—which underlies the thought of many contemporary writers on bioethics. The principle of procreative beneficence holds that parents or single reproducers are at least prima facie obliged to select the child, out of a range of possible children they might have, who will be likely to lead the best life. My aim in this paper is to argue that prospective parents, just by dint of their being prospective parents, are (...) in fact not obliged to act on PPB. That is, there is something about their filling the role of prospective parents that exempts them from selecting the child with the best life. I urge that it is more realistic to view prospective parents as bound by a principle of acceptable outlook, which holds that they ought not to select children whose lives will contain an unacceptable amount of suffering. (shrink)

One of the central theses of egalitarian liberals in the domain of distributive justice is that talented individuals should not be allowed to keep their entire market-income even if it flows solely from their greater abilities. This claim is usually supported by one of several arguments or some mixture of them, but in the present paper, I want to concentrate on the version that invokes equality of opportunity as its starting point. Namely, it is claimed that every human being should (...) enjoy an equal starting point in the life-race but that this is not secured insofar as some have greater natural talents than others. Therefore, egalitarians hold that results that arise from such an unfair situation are unjust and should be corrected by a redistributive taxation. I want to criticize this argument by hoping to show that it presupposes an untenable view about identity of persons. (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)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

The possibility of genetic enhancement to increase the likelihood of success in sport and life’s prospects raises questions for accounts of sport and theories of justice. These questions obviously include the fairness of such enhancement and its relationship to the goals of sport and demands of justice. Of equal interest, however, is the effect on our understanding of individual effort, merit, and desert of either discovering genetic contributions to components of such effort or recognizing the influence of social factors on (...) the development and exercise of individual effort. This paper analyzes arguments about genetic enhancement with the goal of raising questions about how sport and justice regard unchosen, undeserved inequalities and what is assumed to be their opposite—namely, the exercise and results of individual effort. It is suggested that contemplating enhancement of natural assets previously outside human control may reinforce recognition of responsibility to intervene with regard to social advantages so as to support individual effort and improve individuals’ life prospects. (shrink)

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.

The successful decoding of human genome and subsequent advances in new life sciences innovation create technological presuppositions of a new possibility of justice i.e. the just distribution of both social and natural goods. Although Rawlsians attempt to expand their theory to include this new possibility, they fail to provide plausible metrics of social justice in the genomics and post-genomics era. By contrast, Senians seem to succeed to do so through their index of basic capabilities. This paper explores what might be (...) regarded as a Senian perspective of distributive justice in new life sciences innovation. The argument is that, by comparing freedoms instead of primary goods, the capability theory allows not only for the identification of injustices linked to natural lottery but also for their elimination through the use of new genomic technologies, including gene-based diagnostics, gene therapy, somatic cell engineering and germ-line engineering. These innovative technologies seem to have the potential to reduce variability in natural goods and therefore enable individuals to convert social goods into well-being or welfare. (shrink)

Since the establishment of the Human Genome Project and the identification of genes in human DNA that play a role in human diseases and disorders, a long, moral and political, battle has began over the extension of IPRs to information contained in human genetic material. According to the Nuffield Council on Bioethics, over the past 20 years, large numbers of human genes have been the subject of thousands of patent applications. This paper examines whether human gene patents can be justified (...) in terms of liberal theories of morality such as natural law, personality development, just reward and social utility. It is argued that human gene patents are in conflict with fundamental principles of liberal morality and justice because they result in "genetic information feudalism". (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)

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.

In recent works, Shlomi Segall suggests and defends a luck egalitarian approach to justice in health. Concurring with G. A. Cohen’s mature position he defends the idea that people should be compensated for “brute luck”, i.e. the outcome of actions that it would be unreasonable to expect them to avoid. In his defense of the luck egalitarian approach he seeks to rebut the criticism raised by Norman Daniels that luck egalitarianism is in some way too narrow and in another too (...) wide to uphold justice in health and health care distribution. He points out that a pluralistic outline of luck egalitarianism taking into account the moral requirement of meeting everyone’s basic needs can avoid this line of criticism. In this article I argue against the application of such pluralistic luck egalitarianism in matters of health distribution. First of all, Segall has not shown that luck egalitarianism handles well health distributions above a threshold of basic needs. Secondly, his way of avoiding Elizabeth Anderson’s abandonment objection is theoretically problematic. Finally, I argue that luck egalitarianism in general fails to acknowledge the moral foundation of health and health care as a basic human entitlement. Thus I conclude that luck egalitarianism fails to take health needs seriously and that it cannot therefore uphold justice in health. (shrink)

In this article I explore disability as far more than individual private tragedy, suggesting it has a social location and reproduction. Within this context we look at the power relations associated with bioethics and its largely uncritical use of the biomedical model. Within that context the topics of genetics, euthanasia, and biotechnology are explored. In examining these topics a social account of disability is proposed as rejected knowledge. Accordingly we explore the political nature of bioethics as a project.

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)

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)

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)

Policy-makers have attempted to frame the ethical requirements that are relevant to the creation of human beings via reproductive technologies. Various reports and laws enacted in New Zealand, Canada, Australia, and Britain have introduced tests for how we should weigh child welfare when using these technologies. A number of bioethicists have argued that child welfare should be interpreted as a “best interests” test. Others have argued that there are ethical reasons why we should abandon this kind of test. I will (...) argue that at least some of the relevant policy can be interpreted as requiring those wishing to exercise their procreative liberty to have a reasonable plan to care and nurture any resulting child, thereby respecting the internal preconditions of that liberty. This interpretation of child welfare requirements answers some of the ethical worries about a child welfare test. (shrink)

In this article, I critically analyze the anthropological foundation of the bioethics of philosopher Jean-François Malherbe, particularly as presented in his book, Pour une Éthique de la Médecine. Malherbe argues that such practices as organ donation and transplants, assisted reproduction, resuscitation, and other uses of biotechnologies in contemporary medicine are unethical because they go against essential human nature. Furthermore, he uses this position as a basis to prescribe public policy and institutional practice. In contrast, I argue not only that ‘human (...) nature’ is much more malleable and adaptive to changes in technology and society than Malherbe allows, but also that his criticisms of medicine and technoscientific development overstep the bounds of the social function of philosophical ethics, which is to inform and clarify public debate. Public policy and institutional practice is thus best left to the democratic political process under the parameters of the just rule of law. (shrink)

Joel Feinberg and Dan Brock have independently developed a solution to the Problem of Nonidentity as it occurs in cases where a mother's negligent act of conception causes her child to be born with a severe disability. I display three problems in the Feinberg‐Brock proposal and develop an alternative view that explains both cases of wrongful conception and additional instances of the Problem of Nonidentity presented by Derek Parfit and others.

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. However, the (...) social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (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 is often argued that it does not matter morally whether biomedical interventions treat or prevent diseases or enhance nondisease traits; what matters is whether and how much they promote well-being. Therapy and enhancement both promote well-being, the argument goes, so they are not morally distinct but instead continuous. I provide three reasons why this argument should be rejected when it is applied to choices concerning the genetic makeup of future people. First, it rests on too simple a conception of (...) the badness of disease. Second, it wrongly assumes that disease avoidance and enhancement can proceed with similar accuracy. Third, it overlooks that disease avoidance tends to be more urgent than enhancement from the point of view of distributive justice. Although none of these reasons establishes a firm therapy-enhancement distinction, they show that a continuum model is not an attractive alternative. (shrink)

This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive genetic technologies to prevent the birth of individuals with disabilities is an expression of disvalue for existing people with disability. Many have been persuaded by this impassioned perspective. This paper shows that this argument is misguided and so does not constitute a sound objection to the use of RGTs to prevent (...) disability in future children. It first identifies some responses to the objection that may be sound but not completely convincing to proponents of the expressivist position. It then describes a thought experiment designed to demonstrate more clearly that choosing to use RGTs to prevent disability in future children does not convey a negative message about people who have disabilities. After describing a decision that clearly does not send such a message, the paper walks through a series of cases and shows how, despite differences that might seem to be morally relevant, each is morally equivalent to the previous one with respect to the extent that it expresses disvalue for such individuals. (shrink)

In the field of health technology assessment, there are several approaches that can be used for ethical analysis. However, there is a scarcity of literature that critically evaluates and compares the strength and weaknesses of these approaches when they are applied in practice. In this paper, we analyse the applicability of some selected approaches for addressing ethical issues in HTA in the field of complex health interventions. Complex health interventions have been the focus of methodological attention in HTA. However, the (...) potential methodological challenges for ethical analysis are as yet unknown.Six of the most frequently described and applied ethical approaches in HTA were critically assessed against a set of five characteristics of complex health interventions: multiple and changing perspectives, indeterminate phenomena, uncertain causality, unpredictable outcomes, and ethical complexity. The assessments are based on literature and the authors’ experiences of developing, applying and assessing the approaches.The Interactive, participatory HTA approach is by its nature and flexibility, applicable across most complexity characteristics. Wide Reflective Equilibrium is also flexible and its openness to different perspectives makes it better suited for complex health interventions than more rigid conventional approaches, such as Principlism and Casuistry. Approaches developed for HTA purposes are fairly applicable for complex health interventions, which one could expect because they include various ethical perspectives, such as the HTA Core Model® and the Socratic approach.This study shows how the applicability for addressing ethical issues in HTA of complex health interventions differs between the selected ethical approaches. Knowledge about these differences may be helpful when choosing and applying an approach for ethical analyses in HTA. We believe that the study contributes to increasing awareness and interest of the ethical aspects of complex health interventions in general. (shrink)

Does biomedical enhancement challenge justice in health care? This paper argues that health care justice based on the concept of normal functioning is inadequate if enhancements are widespread. Two different interpretations of normal functioning are distinguished: the “species typical” vs. the “normal cooperator” account, showing that each version of the theory fails to account for certain egalitarian intuitions about help and assistance owed to people with health needs, where enhancements are widespread.

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)

Innovations in science and technology are often the source of public concern, but few have generated debates as intense and at the same time with such a popular fascination as those surrounding genetic technologies. Unequal access to preimplantation diagnosis could give some individuals the opportunity to select children with more advantageous predispositions.

The paper discusses criticisms against pharmacological cognitive enhancement from a liberal perspective. The criticisms point to the consequences of cognitive enhancement in third parties and in the agents, as well as in independent values. According to the article, these criticisms are not convincing. On the contrary, it argues that under certain assumptions there are good reasons in favor of free access to cognitive enhancement.

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)

Advances in reproductive genetic engineering have the potential to transform human lives. Not only do they promise to allow us to select children free of diseases, they can also enable us to select children with desirable traits. In this paper, I consider two clusters of arguments for the moral permissibility of reproductive genetic engineering, what I call the Perfectionist View and the Libertarian View; and two clusters of arguments against reproductive genetic engineering, what I call the Human Nature View and (...) the Motivation View. I argue that an adequate theory of the ethics of reproductive genetic engineering should take into account insights gained from these views. (shrink)

Volume 20, Issue 8, August 2020, Page 21-23.

Doping in sport counts as a typical example of unfair behaviour and a good illustration of ethical problems produced by enhancement activities. However, there are some authors who argue that enhancement in sport is not intrinsically problematic but only so in those circumstances that make it dangerous for athletes or unfair to competitors, or which give rise to suspicion in the viewing public. In contrast to this, the author of the present article shows that enhancement activities are contradictory to basic (...) requirements and preconditions of sports competitions. These preconditions are, firstly, a basic equality of opportunities for all competitors and, secondly, a clear causal connection between a specific performance and an individual athlete, in the sense of authorship of that performance. It cannot be excluded that there could exist future sports competitions without these qualities, but this would clearly be a fundamentally different kind of sport from nowadays. Therefore, the normative background of the current concept of sports competitions, as such, limits the use of enhancement practices to a rather low level. (shrink)

An intellectual and cultural movement advocating a radical enhancement of human performance via technoscientific and biomedical advances, transhumanism has grown in notoriety in recent years. Grouping engineers, philosophers, sociologists, and entrepreneurs, the movement and its ideals of enhanced humans have a strong social resonance, be it doping in sport, the use of smart drugs, or the biomedical battle against aging. This article sheds theoretical and critical light on transhumanism through the lens of human perfectibility. It particularly aims to show how (...) the movement marks a significant reversal of the humanist conception of human perfectibility inherited from the Enlightenment. Far from working for the social and political emancipation of humans and the human condition, transhumanism is emblematic of a depoliticized conception of human perfectibility focused on the technoscientific adaptation of the human being. Transhumanism thus marks a major rupture with the modern democratic project of autonomy. (shrink)

As individuals grow older, they usually require assistance with the daily tasks of self-care. This type of assistance, ancillary care, is essential to maintaining the health of those who need these services. In his prudential lifespan account, Norman Daniels includes access to such services making his account an attractive proposal given the current demographic shift. In this paper, I examine the prudential lifespan account through the lens of old age and I focus on the two concepts on which the lifespan (...) account relies. I show that these two concepts, normal species functioning and opportunity cannot buttress Daniels’s lifespan account; at least it cannot do so for older persons. The tensions that I identify in the prudential lifespan account in relation to aging are instructive for the more recent proposals to include aging in a theory of health and health justice. In addition, my analysis allows me to demonstrate that Daniels’s view of opportunity is irreconcilable to capabilities, the latter being more adaptable to the realities of aging. If capabilities appear more promising, it is nonetheless imperative that the specificities of extended care, such as the need for unpaid caregiving, be taken into consideration. (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)

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)

In 2008 the Human Fertilisation and Embryology Act amendments made deliberately choosing to bring disability into the world, using assisted reproduction, a criminal offence. This paper considers whether the legal prohibition above, should influence other policy areas concerning the welfare of future children such as new possibilities presented by foetal surgery and in utero gene therapy. If we have legal duties to avoid disability in one context should this influence our avoidance of disability in this other context? This paper investigates (...) whether the State might have a stake in wider promotion of practices to reduce the degree of disability in foetuses that will come to exist. Not selecting for disability does not affect the welfare of any future individual, whereas treating in utero abnormalities can optimize the eventual child’s welfare; antenatal interventions stand to improve clinical outcomes and welfare should that specific child be born. I explore why the State may want to intervene in the antenatal setting and to what extent, if at all; the State should implement these technologies. I argue that if the State is justified in intervening to outlaw the choosing to create disabled lives using assisted reproductive techniques, it is also justified in putting pressure on prospective parents to accept therapies in utero to help their child be born less disabled. However, I qualify this with the argument that the State is not justified in using force or the criminal law in this situation during pregnancy. (shrink)

The discursive explosion that was provoked by the new genetics could support the impression that the ethical and social problems posed by the new genetics are somehow exceptional in their very nature. According to this view we are faced with special ethical and social problems that create a challenge so fundamental that the special label of genethics is needless to justify. The historical account regarding the evolution of the gene concepts could serve us to highlight the limits of what we (...) know about genes and what we can do with genes. The widespread notion about the exceptionality of genetic knowledge and its applicative possibilities is hardly justifiable and leads to misunderstandings regarding the conceptualization of the ethical and social problems we might face. Following a more realistic interpretation of the role of genes in human life we might avoid a whole set of fictive dilemmas and counterproductive regulatory efforts in bioethics. Bioethical discourse should move from the gene-centered scientific discourse toward the more sophisticated and complex discourses where human development represented as a matter of complex interactions between genomes and environments, between genes, educational factors, nutritional regimes, and other different developmental resources. If a gene is seen as one among the different developmental resources that are shaping a given human trait then both genethics and genetic exceptionalism could hardly be represented as a justified approach in discussing the ethical and social problems of genetics. (shrink)