The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative (...) impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

Human values seem to vary across time and space. What implications does this have for the future of human value? Will our human and (perhaps) post-human offspring have very different values from our own? Can we study the future of human values in an insightful and systematic way? This article makes three contributions to the debate about the future of human values. First, it argues that the systematic study of future values is both necessary in and of itself and an (...) important complement to other future-oriented inquiries. Second, it sets out a methodology and a set of methods for undertaking this study. Third, it gives a practical illustration of what this ‘axiological futurism’ might look like by developing a model of the axiological possibility space that humans are likely to navigate over the coming decades. (shrink)

It is widely accepted that children enjoy some form of a right to bodily integrity. However, there is little agreement about the precise nature and scope of this right. This paper offers a conceptual analysis of the child's right to bodily integrity, in order to further elucidate the relationship between the child's right to bodily integrity and considerations of autonomy. Following a discussion of Leif Wenar's work on the structure and justification of rights, I first explain how the adult's right (...) to bodily integrity can be distilled into separate elements that may plausibly be justified by different moral considerations. In particular, I claim that this analysis suggests that whilst the adult's right to bodily integrity is not wholly reducible to bodily autonomy, autonomy nonetheless remains entwined with our understanding of this right in a number of ways. On the basis of this discussion, I go on to outline three important complexities that arise when we consider the child's right to bodily integrity, before particularly focusing on the question of how third parties should determine whether or not to perform a physical interference upon a child who lacks decision-making capacity. Here, I raise some objections to Earp and Mazor's recent attempts to answer this question, before briefly defending an ‘autonomy-based interests’ account of permissible interference, an account that shares in what I take to be the spirit, if not the precise letter, of these earlier views. (shrink)

Moral pluralism poses a foundational problem for secular clinical ethics: How can ethical dilemmas be resolved in a context where there is disagreement not only on particular cases, but further, on...

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)

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)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way (...) that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (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)

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)

:In this article, we consider contexts or domains in which moral bioenhancement interventions possibly or most likely will be implemented. By looking closely at similar or related existing practices and their relevant ethical frameworks, we hope to identify ethical considerations that are relevant for evaluating potential moral bioenhancement interventions. We examine, first, debates on the proper scope of moral education; second, proposals for identifying early risk factors for antisocial behaviour; and third, the difficult balancing of individual freedom and third party (...) concerns in psychiatry. In imagining moral bioenhancement in practice, we observe that unlike other forms of enhancement, moral enhancement fundamentally asks how the interests and preferences of the individual and the interests of others should be weighed. Highly diverse domains such as education, mental health, and the judicial domain might be involved, and moral bioenhancement might challenge existing institutional settings. Given these highly varied contexts and domains, it appears unlikely that there will be a distinct set of practices that will be referred to as “moral bioenhancement.”. (shrink)

Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gametes in order to change DNA sequences that are associated with diseases. Modifying the human germline, however, is currently illegal in many countries but has been suggested as a ‘last resort’ option in some reports. In contrast, preimplantation genetic diagnosis is now a well-established practice within reproductive medicine. (...) Both methods can be used to prevent children from being born with severe genetic diseases. This paper focuses on four moral concerns raised in the debate about germline gene editing and applies them to the practice of PGD for comparison: Violation of human dignity, disrespect of the autonomy and the physical integrity of the future child, discrimination of people living with a disability and the fear of slippery slope towards immoral usage of the technology, e.g. designing children for specific third party interests. Our analysis did not reveal any fundamental differences with regard to the four concerns. We argue that with regard to the four arguments analyzed in this paper germline gene editing should be considered morally as acceptable as the selection of genomes on the basis of PGD. However, we also argue that any application of GGE in reproductive medicine should be put on hold until thorough and comprehensive laws have been implemented to prevent the abuse of GGE for non-medical enhancement. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the specific field of (...) genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

Cage-Fighting, also known as Mixed Martial Arts, is a combat sport that allows participants to grapple, punch, kick, elbow and knee—a combination of elements from many martial arts. While it...

Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, of (...) morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

One prominent argument against the use of preimplantation genetic diagnosis to select a deaf embryo with the aim of creating a deaf child is that it violates the child’s right to an open future. This paper challenges the open future argument against deaf embryo selection, criticizing its major premise that deafness limits a child’s opportunity range in ways that compromise their future autonomy. I argue that this premise is not justified and is supported by negative presumptions about deaf embodiments that (...) are suspect and in need of further argumentation. First, available interpretations of the open future concept fail to justify the devaluation of deaf traits as inherently autonomy-diminishing. Second, arguing against deaf embryo selection requires demonstrating that a deaf trait generally constrains opportunity ranges independent of social context. But such analyses neglect important social and relational components of autonomy. For these reasons, merely appealing to the child’s right to an open future does not sufficiently support the conclusion that deaf embryo selection is wrong. (shrink)

How should liberal-democratic governments deal with emerging vaccination hesitancy when that leads to the resurgence of diseases that for decades were under control? This article argues that vaccination policies should be justified in terms of a proper weighing of the rights of children to be protected against vaccine-preventable diseases and the rights of parents to raise their children in ways that they see fit. The argument starts from the concept of the ‘best interests of the child involved’. The concept is (...) elaborated for this context into the dual regime structure in which parents have fiduciary authority over what they consider to be best for their child, and the state has fiduciary authority over a child’s basic interests. This argument leads to conditional mandatory vaccination programs that should be informed by a correct balancing of the two legal principles of proportionality and precaution. This results in contextual childhood vaccination policies of upscaling interference: a three-tiered approach of increased intrusion, from voluntary program when possible and mandatory or even compulsory programs when necessary to protect the child’s basic interests. (shrink)

Das Gendiagnostikgesetz verbietet seit 2010 die pränatale Diagnostik spätmanifestierender Erkrankungen GenDG). In seiner Begründung bezog sich der Gesetzgeber in Analogie zu internationalen Empfehlungen für den pädiatrischen Bereich vor allem auf das Recht des heranwachsenden Kindes bzw. des späteren Erwachsenen auf Nichtwissen. Mit diesem gesetzlichen Verbot hat Deutschland einen viel diskutierten Sonderweg in der Regulierung genetischer Pränataldiagnostik eingeschlagen. Seither jedoch hat sich nicht nur die Perspektive auf prädiktive Testungen im Kindesalter verändert. In zunehmendem Maße generieren auf das gesamte Genom abzielende Diagnostikangebote (...) auch andere vorgeburtlich genetische Informationen, die – in ähnlicher Weise wie diejenigen zu spätmanifestierenden Erkrankungen eine potenzielle Gefahr für das Recht auf Nichtwissen der späteren Person darstellen. Es soll daher im Rahmen dieses Beitrages überprüft werden, inwiefern das deutsche Diagnostikverbot und dessen Bezug auf das Recht auf Nichtwissen des späteren Kindes eine tragfähige Basis zur Regulierung gendiagnostischer Untersuchungen in der Pränatalmedizin insgesamt darstellt bzw. zukünftig darstellen kann.Untersucht wird der Argumentationsgang des Diagnostikverbotes im Hinblick auf spätmanifestierende Erkrankungen vor dem Hintergrund der Entwicklungen in der prädiktiven Diagnostik. Eine Analyse des normativen Begründungsrahmens zeigt, dass nach wie vor deutlicher Klärungsbedarf hinsichtlich der philosophisch-ethischen Fundierung wie auch hinsichtlich der Interpretation eines Rechts auf Nichtwissen eines Kindes im Kontext von genetischer Diagnostik besteht. Darüber hinaus müssen auch Interessen des Kindes an eventuell möglich werdender pränataler Behandlung oder Prävention von Erkrankungen in die Abwägung miteinbezogen werden.Um zukünftigen Herausforderungen genomischer Pränataldiagnostik und -therapie begegnen zu können, müsste dringend geklärt werden, inwiefern Rechte zukünftiger Personen tatsächlich in der speziellen Situation der Schwangerschaft relevant sein können und mit welchen Pflichten diese für den Gesetzgeber, aber insbesondere auch für zukünftige Eltern und Ärzte einhergehen. Der Menschenrechtsdiskurs könnte hierfür eine tragfähige Basis und hilfreiche Strategien liefern. (shrink)

Liberals writing about the family frequently cite the child's ‘right to an open future’ in discussions of the ethics of parental decision-making for young children. This purported right grounds certain claims on behalf of children in considerations related to their future autonomy. In this article, I argue that there is no compelling argument in favor of a distinctive ‘right to an open future’ construed as either a negative or a positive right. Insofar as claims made about the content of this (...) purported right are justified, they can be grounded in the interests of the child or in other uncontroversial rights. Talk of a ‘right to an open future’ serves only to obscure the ethical considerations that actually matter and citing the right is not helpful in deciding what may or should be done. I illustrate this claim by reference to two examples of how the ‘right to an open future’ has been applied: one regarding genetic testing for adult-onset disorders and one regarding selection for disabilities. (shrink)

Bioethics has dedicated itself to exploring and defending both reasons for and against certain aspects of clinical care, biomedical research and health policy, including what decisions must be made, who should make them, and how they should be made. In pediatrics, it’s widely acknowledged that parents’ reasons may matter pragmatically; attending to parents’ reasons is important if we want to work with families. Yet the conventional view in pediatric ethics is that parents’ reasons are irrelevant to whether a decision is (...) permissible or impermissible according to accepted ethical standards. In this paper, we explore whether parents’ reasons matter ethically and, if so, in what way and for whom. First, we clarify what we mean by ‘reasons.’ Second, we provide an overview of how reasons are typically treated in medical decision-making and pediatric ethics. Third, we analyze a hypothetical pediatric case to illustrate how changing reasons can transform ethical analyses, including by contributing to where and how clinicians and ethicists draw the boundaries intrinsic to common pediatric ethical frameworks. We push back against the conventional view and argue that parents’ reasons matter ethically in several ways. We call for further research on the role of parents’ reasons in clinical ethics deliberation. (shrink)

In their recent article, scholars Keisha Ray and Jane Fallis Cooper claim that “bioethicists should not be deterred from advocating for a healthy environment […] instead, […] underscore the importa...

As climate change risks intensify, I welcome Ray and Cooper’s call for bioethicists to engage with environmental injustice, though I am pessimistic it is another false dawn for bioethics engagement...

This paper is on the paradox of a right, the right to education that is almost universally declared as compulsory. The reason for the compulsion seems to be in its nature as a right. Within a Hohfeldian framework, any claim-right has a corresponding duty. Given that making education compulsory equates to establishing a duty, the possible candidates to the duty generating right-bearers are considered.The rationales for compulsion from the points of view of positive (for one’s own good), negative (no compulsion (...) at all), and republican liberty (society right) are analyzed, and the conclusion is reached that none of the three can produce sufficient justification for compulsion. The main conclusion is that education is a right, not an obligation. Therefore, neither the children nor their families can be legally forced to an unrestricted exercise of this right without even being heard. The law must reflect, in its progressive flexibility, the growing possibilities of choice for right-holders who are adults ‘in fieri’. (shrink)