Many arguments have been made against gene editing. This paper addresses the commonly invoked argument that gene editing violates human dignity and is ultimately a subversion of human nature. There are several drawbacks to this argument. Above all, the concept of what human dignity means is unclear. It is not possible to condemn a practice that violates human dignity if we do not know exactly what is being violated. The argument’s entire reasoning is thus undermined. Analyses of the arguments involved (...) in this discussion have often led to the conclusion that gene editing contravenes the principle of genetic identity (genetic immutability) thereby subverting a requisite of human dignity and ultimately threatening human nature. This paper refutes these arguments and shows that any opposition to gene editing cannot rely on the human dignity argument. (shrink)

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying (...) state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements, it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated. (shrink)

This paper examines whether or not children’s continued electoral exclusion is morally defensible. Ultimately; there is a deep tension between the egalitarian presuppositions of democracy and our apparent unwillingness to grant children voting rights. Unless a plausible distinction can be found; then; between adults and children that also tracks the underlying reasons for endorsing democracy in the first place; the continued political disenfranchisement of our youngest citizens is shown for what it is: social injustice. e paper begins by exploring some (...) of the conceptual difficulties that childhood creates in relation to democracy. It then assesses the implications of two very different approaches to democracy for children’s voting rights: proceduralism and a child’s supposed right to an open future. (shrink)

This article brings together two debates in bioethics more substantively than has been the case until now. One is the methodological debate over "principlism," i.e., the theoretical framework for analyzing and solving ethical problems proposed by Beauchamp and Childress in Principles of Biomedical Ethics. The other is the normative debate about reproductive ethics, i.e., procreative rights and obligations in a time of pervasive opportunities for making detailed choices about the properties and capacities of future people. The obvious point of bringing (...) the debates together is to show how they can illuminate each other in fruitful ways consistent with the method of reflective equilibrium endorsed in PBE. Furthermore, discussions of reproductive ethics is almost absent in PBE, making it an interesting "test case" on how principlist theory can have an impact on and be affected by confrontations with new practices and considerations in biomedicine. Reproductive ethics is especially interesting due to the so-called non-identity considerations, which pose a challenge to common morality views on harm to and respect for persons. My focus is mainly on some methodological points about the import of concrete normative discussions for formulating basic normative principles. However, I unfold a number of substantial points in order to demonstrate this. It is my impression that most writers on principlism underestimate the effect of engaging with concrete problems. Specifically, I conclude that reflecting on procreative obligations provides strong reasons for specifying the basic principles in ways that uncover new dimensions of them and not just new applications. _Key words: _principlism, reproductive ethics, non-identity problem, nonmaleficence, respect for persons. (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...) have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (shrink)

The bioethical principle of autonomy is problematic regarding the future of the embryo who lacks the ability to self-advocate but will develop this defining human capacity in time. Recent experiments explore the use of clustered regularly interspaced short palindromic repeats /Cas9 for germline engineering in the embryo, which alters future generations. The embryo’s inability to express an autonomous decision is an obvious bioethical challenge of germline engineering. The philosopher Joel Feinberg acknowledged that autonomy is developing in children. He advocated that (...) to reserve this future autonomy, parents should be guided to make ethical decisions that provide children with open futures. Here, Feinberg’s 1980 open future theory is extended to the human embryo in the context of CRISPR germline engineering. Although the embryo does not possess the autonomous decision-making capacity at the time of germline engineering, the parental decision to permanently change the unique genetic fabric of the embryo and subsequent generations disregards future autonomy. Therefore, germline engineering in many instances is objectionable considering Feinberg’s open future theory. (shrink)

Many liberals and secularists believe that religious schooling should not be publicly funded or that it should simply be banned. Challenging those views, I claim that although liberal states may refuse to fund and may even ban certain illiberal separate religious schools, it is impermissible, for distinctively liberal reasons, to completely ban publicly funded religious schooling. I will however argue that providing religious instruction within common public schools is more desirable than having separate religious schools. I argue that providing religious (...) instruction within common public schools is a better way to balance the educational interests of parents, children and society than banning religious schooling altogether; authorizing it but refusing to fund it; or having publicly funded separate religious schools. (shrink)

What cognitive goods do children plausibly have a right to in an education? In attempting to answer this question, I begin with a puzzle centred around Feinberg’s observation that a denial of certain cognitive goods can violate a child’s right to an open future. I show that propositionalist, dispositionalist and objectualist characterisations of the kinds of cognitive goods children have a right to run in to problems. A promising alternative is then proposed and defended, one that is inspired in the (...) main by Wittgenstein’s ‘hinge’ epistemology as developed in his posthumous On Certainty. (shrink)

Unsere Sicht der Demenz ist von kulturellen Metaphern geprägt. Sie ziehen Analogien zu vertrauten Erfahrungsbereichen und eröffnen so ein Verständnis von einem ansonsten schwer fassbaren und letzten Endes unergründlichen Geschehen. In zeitgenössischen Diskursen über die Demenz spielen insbesondere zwei biographische Metaphern eine maßgebliche Rolle: die der,Rückkehr in die Kindheit‘ und die des,Todes bei lebendigem Leib‘. Der Beitrag unterzieht beide Vorstellungen einer kritischen Reflexion. Er erläutert zunächst die kulturgeschichtliche Herkunft und Bedeutung der Kindheits- und Todesmetapher. Im Anschluss geht er ihren Implikationen (...) für das Verständnis von Demenz und die Einstellungen und Verhaltensweisen gegenüber den Betroffenen nach. Dabei kommt eine Lebensverlaufsperspektive zum Tragen, die die Bedeutung der zeitlichen Erstreckung und Verlaufsstruktur des menschlichen Lebens für die ethische Theoriebildung systematisch zu berücksichtigen sucht. Auf diese Weise lässt sich verdeutlichen, dass beide Metaphern die Altersdemenz letztlich einem anderen Punkt des menschlichen Lebens angleichen und sie damit in je unterschiedlicher Weise als eine Art biographischer Normabweichung auffassen. Die Auseinandersetzung erlaubt Schlussfolgerungen mit Blick auf medizin- und pflegeethische Debatten um Selbstbestimmung, Stellvertreterentscheidungen und Vorausverfügungen im Kontext der Altersdemenz. Auf einer theoretisch-konzeptionellen Ebene verdeutlicht sie darüber hinaus auch die Bedeutung einer biographie- und kultursensiblen Perspektive für die ethische Theoriebildung im Allgemeinen. (shrink)

This article critically surveys the current bioethical and politico-philosophical debate about the ethical permissibility of a so-called ‘liberal eugenics’ and argues that neither the liberal argument for nor the liberal argument against human genetic enhancement is internally consistent as, ultimately, each ends up violating the very liberal principles it nonetheless pretends to defend. In particular, it will be shown that while the argument against a new eugenics necessarily entails a preemptive dehumanization of any potential enhanced form of life, the argument (...) for it threatens to reduce any non-enhanced form of life to a “wrongful life” or a life not worth living. It will therefore be concluded that the specific stakes of this contentious issue cannot be grasped within a liberal conceptual framework. (shrink)

Several philosophers of education argue that schooling should facilitate students’ development of autonomy. Such arguments fall into two main categories: Student-centered arguments support autonomy education to help enable students to lead good lives; Public-goods-centered arguments support autonomy education to develop students into good citizens. Critics challenge the legitimacy of autonomy education—of the state imposing a schooling curriculum aimed at making children autonomous. In this paper, I offer a unified solution to the challenges of legitimacy that both arguments for autonomy education (...) face. I first defend a particular construal of liberal legitimacy, and then consider each legitimacy challenge in light of that construal. I argue that the legitimacy challenges confronting both types of argument can be overcome. Further, I explain why we should pursue both arguments, rather than resting the entire case for autonomy education on one or the other. I conclude that each argument—if it can justify autonomy education at all—can justify autonomy education consistent with the requirements of liberal democratic legitimacy. (shrink)

Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive potential. ‘Fertility preservation’ for children who have not yet reached puberty involves surgically removing and cryopreserving reproductive tissue prior to treatment in the expectation that strategies for the use of this tissue will be developed in the future. Fertility preservation for prepubertal children is ethically complex because the techniques largely lack proven efficacy for this age group. There is professional difference of opinion (...) about whether it is ethical to offer such ‘experimental’ procedures. The question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children? We present the ethical concerns about prepubertal fertility preservation, drawing both on existing literature and our experience discussing this issue with clinicians in clinical ethics case consultations. We argue that offering the procedure is ethically justifiable in certain circumstances. For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; when the procedure is medically safe, it is the parents’ decision to make, with appropriate information and guidance from the treating clinicians. We suggest that clinical ethics support processes are necessary to assist clinicians to engage with the ethical complexity of prepubertal fertility preservation and describe the framework that has been integrated into the pathway of care for patients and families attending the Royal Children’s Hospital in Melbourne, Australia. (shrink)

The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...) perspective. After briefly describing the novel diagnostic contexts leading to unsolicited findings, we synthesize and reflect on six core ethical issues that relate to both specialties: terminology; benefits and risks; autonomy; disclosure of unsolicited findings to children; uncertainty; and filters and routine screening. We identify ethical rationales that pertain to both fields and may contribute to more ethically sound policies. Considerations of preserving public trust and ensuring that people perceive healthcare policies as fair also support the need for a combined debate. (shrink)

Do states have a right to exclude prospective immigrants as they see fit? According to statists the answer is a qualified yes. For these authors, self-determining political communities have a prima facie right to exclude, which can be overridden by the claims of vulnerable groups such as refugees and children born in the state’s territory. However, there is a concern in the literature that statists have not yet developed a theory that can protect children born in the territory from being (...) excluded from the political community. For if the self-determining political community has the right to decide who should form the self in the first place, then that right should count against both newcomers by immigration and newcomers by birth. Or so the concern goes. In this essay, I defend statism against this line of criticism and provide a liberal justification for the inclusion of children born within the state’s borders. My account leads to some surprising implication for citizenship law, as well as immigration arrangements in the area of asylum and unauthorized immigration. (shrink)

The aim of this article is to outline the basis for a comprehensive account of educational rights. It begins by acknowledging the difficulties posed by diversity, and defends a conception of universal human rights that limits parental educational discretion. Against the backdrop of the literature of public reason and fair equality of opportunity, it sketches arguments for the existence of rights to education of some specific kinds. Those rights, and associated educational purposes, are systematised on the basis of a conception (...) of education as initiation into practices that express human flourishing. (shrink)

In recent years, the question of whether prospective parents might have a moral obligation to select against disability in their offspring has piqued the attention of many prominent philosophers and bioethicists, and a large literature has emerged surrounding this question. Rather than looking to the most common arguments given in support of a positive response to the abovementioned question, such as those focusing on the harms disability may impose on the child created, duties and role-specific obligations, and impersonal ‘harms’, a (...) less commonly made set of arguments is focused upon which looks to the harms that a decision not to select against disability may impose on others. Three different possible arguments supporting a limited duty of disability avoidance are thus identified and subsequently explored: harms to parents themselves, harms to existing family members, and harms to other existing members of society. (shrink)

Dieser Beitrag beschäftigt sich mit der Existenz von Menschen als geborene Wesen. Das Eltern-Kind-Verhältnis und in einem weiteren Schritt auch die Familie werden daraufhin untersucht, inwiefern sie ihre moralische Bedeutung aus der besonderen Situation des Kindes beziehen. Diese besondere Situation des Kindes ist gekennzeichnet durch das Faktum der ‚Natalität‘, d. h. durch ein radikales Vorherbestimmt-Sein und eine radikale Abhängigkeit der kindlichen Existenz. Vom Faktum der Natalität geht ein moralischer Appell aus, auf den die Eltern mit dem Versprechen antworten, das in (...) sie gesetzte Vertrauen nicht zu enttäuschen. (shrink)

Pre-natal genetic enhancement affords us unprecedented capacity to shape our skills, talents, appearance and perhaps subsequently the quality of our lives in terms of overall happiness, success and wellbeing. Despite its powerful appeal, some have raised important and equally persuasive concerns against genetic enhancement. Sandel has argued that compassion and humility, themselves grounded in the unpredictability of talents and skills, would be lost. Habermas has argued that genetically altered individuals will see their lives as dictated by their parents’ design and (...) therefore will not acquire an appropriate self-understanding. How should we view enhancement efforts in light of these concerns? I propose that we begin by adopting a defeasibility stance. That is, I ask whether our belief that genetic enhancements serve in the best interests of the child is reason to genetically enhance, underscoring a sort of epistemic vulnerability. I utilize the epistemological notions of defeasible reasons, undercutting and overriding defeaters in order to better understand and systematically evaluate the force of such concerns. I argue that close examination of both objections using this framework shows that we have reason to enhance, a reason that is defeasible but as yet, undefeated. (shrink)

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future justifies proxy (...) consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy’s case. (shrink)

This paper attempts to square libertarian principles with the reality of formal education by asking how far we should and can allow people to do as they wish in educational settings. The major focus is on children in schools, as the concept ‘childhood’ ipso facto implies restrictions on doing as one wishes, and schools as institutions entail inevitable constraints. Children by definition tend to enjoy stronger protection rights but weaker liberty rights than adults. A local preferential calculus is developed as (...) a guide for teachers, suggesting wishes should be granted where feasible and at least welfare neutral. In the case of teachers, employers set the parameters for the feasibility criterion but should also ensure at least welfare neutrality, while students in adult and higher education should be responsible for the feasibility and welfare outcomes of their own choices. (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 sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and (...) the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic. (shrink)

“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond a general (...) concern for the patient's seemingly excessive burden. This article brings the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties. (shrink)

In recent years, neuroscience has been a particularly prolific discipline stimulating many innovative treatment approaches in medicine. However, when it comes to the brain, new techniques of intervention do not always meet with a positive public response, in spite of promising therapeutic benefits. The reason for this caution clearly is the brain’s special importance as “organ of the mind”. As such it is widely held to be the origin of mankind’s unique position among living beings. Likewise, on the level of (...) the individual human being, the brain is considered the material substrate of those traits that in combination render each person unique. In view of this preeminent significance of the brain, it is understandable that, in general, interventions into the brain are considered a delicate issue and that new techniques of intervention are scrutinised with particular care. However, in doing so it is important not to go to the opposite extreme and shy away from promising new therapeutic approaches for debilitating disorders of the brain. With respect to the new techniques of brain intervention a broad interdisciplinary perspective is required to discern irrational fear from justified concern. Hence, the Europäische Akademie established a project group consisting, on the one hand, of experts from different fields of medicine who have got first-hand experience of applying the techniques at issue and, on the other hand, of philosophers and a legal expert. The task of this team was to review the state of the art with respect to each single technique of intervening in the brain, to indicate future developments, and to address the ethical and legal issues common to all of them. The project’s outcome is the book at hand. (shrink)

Liberals who want to support multiculturalism need to be able to justify the parental authority to instill cultural value systems or worldviews into children. However, such authority may be at odds with liberal demands that citizens be autonomous. This paper argues that parents do not have the legitimate authority to instill in their children a specific value system, contrary to the complex and intriguing arguments of Robert Noggle (2002). Noggle’s argument, which draws heavily on key ideas in Rawls’ theory of (...) justice, is that children are not moral agents and that parents are in a special kind of fiduciary relationship vis-à-vis their children. Noggle’s position is contrasted with the more limited conception of parental authority advanced by David Archard (2002). I argue that we can accept that parents are agents of their children, but contra Noggle, this does not entitle them to impose their parochial value systems onto their children. I argue that while children have an interest in acquiring values, they do not have an interest in acquiring a value system. (shrink)

With the rapid advance of bio-genetic technology, it will soon be possible for parents to design children who are born with certain genetic traits. This raises the question whether parents should be allowed to use this technology to engineer their children as they please. In this context it is often thought and argued that liberalism, which has a reputation for being permissive of all kinds of practices, grants parents the right to do so. However, I will argue that, on an (...) understanding of liberalism that is identical to the one used by the defenders of genetic design, liberals should wary of such practices. Liberalism, in its most general form, requires that any time individuals exercise power over others they justify it without relying on any particular conception of what a good life is. When we design children to have certain traits that are only useful for realising some conceptions of the good life, we are implicitly endorsing those conceptions. Hence this practice cannot be justified in neutral terms, and liberals should be sceptical of it. Only when we engineer our children to have traits that are useful for all conceptions of the good life can liberals allow the use of this new technology. Indeed, liberalism holds that this is morally required. (shrink)

Actually possible and conceivable future uses of preimplantation genetic diagnosis (PGD) and germ-line genetic intervention in assisted reproduction seem to offer increasing possibilities of choosing the kind of persons that will be brought to existence. Many are troubled by the idea of these technologies being used for enhancement purposes. How can we make sense of this worry? Why are our thoughts about therapeutic genetic interventions and non-genetic enhancement (for instance education) not accompanied by the same intuitive uneasiness? I argue that (...) the concepts of autonomy and freedom of choice, typically invoked to delimit the morally acceptable uses of reproductive technologies, cannot fully answer these questions. Instead, I suggest that an alternative answer might begin with reflections on the notion of interfering with nature. Drawing on Martin Heidegger’s critique of modern technology and Hans Jonas’s moral philosophy, I outline an argument that attempts to capture what might be particularly troubling about the idea of “designing” future persons. At the core of the argument is the suggestion that enhancing selections and modifications on embryos might be bound up with an instrumentalising, non-responsive perspective on the future persons into which they are intended to grow. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the (...) majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

Non-therapeutic circumcision violates boys’ right to bodily integrity as well as to self-determination. There is neither any verifiable medical advantage connected with the intervention nor is it painless nor without significant risks. Possible negative consequences for the psychosexual development of circumcised boys (due to substantial loss of highly erogenous tissue) have not yet been sufficiently explored, but appear to ensue in a significant number of cases. According to standard legal criteria, these considerations would normally entail that the operation be deemed (...) an ‘impermissible risk’—neither justifiable on grounds of parental rights nor of religious liberty: as with any other freedom right, these end where another person's body begins. Nevertheless, after a resounding decision by a Cologne district court that non-therapeutic circumcision constitutes bodily assault, the German legislature responded by enacting a new statute expressly designed to permit male circumcision even outside of medical settings. We first criticise the normative foundations upon which such a legal concession seems to rest, and then analyse two major flaws in the new German law which we consider emblematic of the difficulty that any legal attempt to protect medically irrelevant genital cutting is bound to face. (shrink)

Individual autonomy is a concept highly appreciated in modern Western societies. Its significance is reflected by the central importance and broad use of the model of informed consent in all fields of medicine. In predictive genetic testing, individual autonomy gains particular importance, for what is in focus here is not so much a concrete medical treatment but rather options for taking preventive measures and the influence that the test results have on long-term lifestyle and preferences. Based on an analysis of (...) autonomy-related issues in predictive genetic diagnosis and genetic screening programmes, this contribution stresses the central relevance of a broad notion of autonomy for the discussion of ethical issues raised in connection with predictive genetic testing and genetic screening programmes. Only against the background of such a broad notion of autonomy, which stresses not only free and informed decision-making but also the relevance of long-term prospects for leading a self-determined life in familial and social contexts, can the manifold autonomy-related issues linked to predictive genetic testing be given adequate consideration. (shrink)

This paper addresses the issue of paternalism in child-rearing. Since the parent–child relationship seems to be the linguistic source of the concept, one may be tempted to assume that raising a child represents a particularly appropriate sphere for paternalism. The parent–child relationship is generally understood as a relationship that is supposed to promote the development and autonomy-formation of the child, so that the apparent source of the concept is a form of autonomy-oriented paternalism. Far from taking paternalism to be overtly (...) unproblematic in such paradigmatic, pedagogical settings, this article analyzes how an effort should be made to understand a child’s capacities and which standards parents should be held to when deciding whether interference truly serves the child’s interests. (shrink)

Martha Nussbaum grounds her version of the capabilities approach in political liberalism. In this paper, we argue that the capabilities approach, insofar as it genuinely values the things that persons can actually do and be, must be grounded in a hybrid account of liberalism: in order to show respect for adults, its justification must be political; in order to show respect for children, however, its implementation must include a commitment to comprehensive autonomy, one that ensures that children develop the skills (...) necessary to make meaningful choices about whether or not to exercise their basic capabilities. Importantly, in order to show respect for parents who do not necessarily recognize autonomy as a value, we argue that the liberal state, via its system of public education, should take on the role of ensuring that all children within the state develop a sufficient degree of comprehensive autonomy. (shrink)

The concept of the ‘well-being of the child’ (like the ‘child’s welfare’ and ‘best interests of the child’) has remained underdetermined in legal and ethical texts on the needs and rights of children. As a hypothetical construct that draws attention to the child’s long-term welfare, the well-being of the child is a broader concept than autonomy and happiness. This paper clarifies some conceptual issues of the well-being of the child from a philosophical point of view. The main question is how (...) well-being could in practice acquire a concrete meaning and content for a particular issue or situation. A phenomenological-hermeneutic research perspective will be outlined that allows the child’s well-being to be elucidated and specified as an anthropological and ethical idea. It is based on a contextual understanding of generative relationships, a combination of the theory and practice of making sense, here described as ‘generative insight’, which could provide ethical guidance for decision making in families, legal practice, medicine or biomedical research. (shrink)

Legitimate parental interests need to be distinguished from any putative rights parents qua parents may be said to possess. Parents have no right to insulate their children from conceptions of the good at variance with those of their own. Claims to the right to faith schools, private schools, home-schooling or to withdraw a child from any aspect of the curriculum designed to enhance a child’s capacity for autonomous decision-making, are refuted.

This text presents an overview of the bioethical debate on pediatric cochlear implants and pays particular attention to the analysis of the Deaf critique of implantation. It dismisses the idea that Deaf concerns are primarily about the upholding of Deaf culture and sign language. Instead it is argued that Deaf skepticism about child rehabilitation after cochlear surgery is well founded. Many Deaf people have lived experiences as subjects undergoing rehabilitation. It is not the cochlear technology in itself they view as (...) problematic, but rather the subsequent rehabilitation process. Because they themselves have experienced what they describe as harmful effects which relate above all to the idea of normalization, they have articulated worries for the new generations of deaf children in need of rehabilitation following cochlear implant surgery. These insights have attracted little attention, but could represent relevant ethical questions of which both practitioners and researchers in the field of implantation might be aware. (shrink)

Educational practices which reinforce cultural diversity are often commended in the name of pluralism, though such practices may be condemned on the same grounds if they are seen as a threat to the fragile sense of political unity which holds a pluralistic society together. Therefore, the educational implications of pluralism as an ideal are often ambiguous, and the ambiguity cannot be resolved in the absence of a clear understanding of the particular civic virtues which a pluralistic society should engender. Two (...) influential conceptions of civic education which purport to affirm the ideal of pluralism are examined and both are found wanting. Liberal political theory proclaims the paramount importance of justice in public life, and justice can be construed in a way that accomodates diversity. However, the kind of civic education which liberalism entails does too little to restrain the centrifugal forces latent in cultural diversity. Communitarian political theory exalts civic friendship as the supreme public virtue, but the civic education it supports is compatible with only a highly attenuated cultural diversity. A third alternative is canvassed which combines the liberal stress on justice with a conception of patriotism distinct from civic friendship. The implications of this alternative for disputes about bias in public schools are briefly discussed. (shrink)

Should society intervene to prevent the risky behavior of precocious teenagers even if it would be impermissible to intervene with adults who engage in the same risky behavior? The problem is well illustrated by the legal case of the 13-year-old Dutch girl Laura Dekker, who set out in 2009 to become the youngest person ever to sail around the world alone, succeeding in January 2012. In this paper we use her case as a point of entry for discussing the fundamental (...) question of how to demarcate childhood from adulthood. After summarizing the case, we identify a ‘demarcation dilemma’ that frames much of the public and expert debate. On the one hand, it seems morally imperative ‘to treat like alike’, which means that both children and adults should be allowed to undertake all actions for which they have the relevant competences. On the other hand, requiring proportional treatment of children and adults seems to neglect the special nature of childhood as a distinct stage in life that ends at a specific age. We introduce the notion of a ‘regime of childhood’ to deal with this problem. This regime includes several dimensions, including the limited liability for children, the supervisory responsibilities of parents, the role of age-based thresholds, and the overarching purpose of childhood as a context for developing autonomy. We argue that, all things considered, there are good reasons not to shift to a regime that offers individual children the option of qualifying for adulthood on the basis of age-neutral criteria. (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)

Suppose we accept prenatal diagnosis and the selective abortion of fetuses that test positive for severe genetic disorders to be both morally and socially acceptable. Should we consider prenatal diagnosis and selective abortion (or other genetic interventions such as preimplantation diagnosis, genetic therapy, cloning, etc.) for nontherapeutic purposes to be acceptable as well? On the one hand, the social aims to promote liberty in general, and reproductive liberty in particular, provide reason for thinking that individuals should be free to make (...) their own decisions about whether or not to employ whatever genetic services might be developed and offered by private enterprise. On the other hand, interventions aimed at enhancement would (in many cases) presumably only be available to those who are financially fortunate. A worry is that unequal access to enhancements that provide competitive advantages to offspring will further and more permanently increase existing unjust disparities between the haves and have-nots. The aim to promote liberty might thus conflict with the social aim of equality. An additional worry is that the development and provision of nontherapeutic genetic interventions would drain limited medical resources away from therapeutic purposes which would ultimately be more fruitful. The promotion of liberty might also thus conflict with the aim to promote aggregate utility. Assuming there is no reason to think that the promotion of liberty should be given absolute priority over both equality and aggregate utility, we need to think more about how to make trade-offs between these three legitimate social aims. (shrink)

It is quite likely that parents will soon be able to use genetic engineering to select the sex of their child by directly manipulating the sex of an embryo. Some might think that this method would be a more ethical method of sex selection than present technologies such as preimplantation genetic diagnosis (PGD) because, unlike PGD, it does not need to create and destroy “wrong gendered” embryos. This paper argues that those who object to present technologies on the grounds that (...) the embryo is a person are unlikely to be persuaded by this proposal, though for different reasons. (shrink)

I will argue that there are difficulties with the application of the four principles approach to incompetent children. The most important principle – respect for autonomy – is not directly applicable to incompetent children and the most appropriate modification of the principle for them is not clear. The principle of beneficence – that one should act in the child’s interests – is complicated by difficulties in assessing what a child’s interests are and to which standard of interests those choosing for (...) children should be held. A further problem with the four principles approach is that parental authority does not follow clearly from the four principles. (shrink)

Thesis (Ph. D.)--University of Hawaii at Manoa, 1995.