David Wasserman

Supported decision-making presents a promising avenue to address tensions between the benefits of clinical research for persons with intellectual disability (PWIDs) and the potential exploitation of PWIDs in research. However, while much has been written about supported decision-making with PWIDs in clinical practice, there has been little attention to its possible use in clinical research, especially for PWIDs whose capacity to benefit from support may be uncertain or disputed. In this article, we will interrogate three challenges that arise in this context: communication, influence, and speculation and displacement. Through examples adapted from ethics consultations and cases in the literature, we aim to provide guidance on how to address these challenges.

Nelson et al.(2023) argue that the inclusion of personal experience in bioethical debates has significant benefits and liabilities, illustrating their claim with two examples: unproven medical treatments and disability bioethics. We believe that the benefits of including personal experience in disability bioethics far exceed its liabilities. The absence of participants with relevant experience impoverishes and biases bioethical debates, while the biases risked by their inclusion are hardly unique to personal experiences and are readily mitigated.

In recent decades, theorists of disability rights have made the moral and legal case for supported decision-making. Whereas surrogate decision-making, the long upheld legal standard, looks to a third party to make a decision for a person deemed to lack the capacity to make that decision for themselves, support in decision-making empowers that person to make their own decisions. In this article, we argue for a significant shift in the norms governing enrollment in clinical trials. Rather than assume that support is only appropriate for individuals who cannot independently make sufficiently informed enrollment decisions, we propose “support in decision-making for all” when research protocols are beyond a certain risk threshold. Drawing inspiration from the universal design movement and feminist insights about autonomy, we argue that making support in decision-making the presumption has substantial expressive and practical benefits, and better empowers all potential research participants to make more informed, autonomous decisions.

This chapter focuses on the relevance of physical disability for justifying extensions of physician assistance in dying to individuals who are not terminally ill. It is concluded that such disability, however severe, provides no stronger dignity-based reason than other kinds of loss or misfortune for permitting physician assistance, either as a condition for finding or presuming unbearable suffering or as an independent ground for physician assistance. A law or policy that singled out physical disability, however severe, as supporting a dignity-based claim for physician assistance would be misguided. The state should not explicitly or implicitly treat any physical condition, or any degree of physical dependence, as undignified.

This chapter begins by outlining the two different approaches to procreative constraints: impersonal and person-affecting. The former require procreators to choose the best or better option, on varying criteria, in choices that result in the same number of people being added to the world, based in part on “birthright” or “role-based” criteria. It treats the failure to so choose as a wrong, but not to the children created. The second sees procreation as constrained by duties to future children or duties arising from the role morality of prospective parents, duties whose breach wrongs any child created. The chapter rejects impersonal approaches because the “same-number” domain and choice to which they apply is difficult to define and arbitrary in scope, and because they are unable to treat procreation as a strictly permissive enterprise.

This chapter counters the claims of Benatar and Shiffrin by arguing that prospective parents _can_ bear children for reasons that concern the good of those children and of the relationship they seek to form with them. They can have the same reasons in seeking to adopt an unknown child, and similar reasons in seeking any intimate relationship with an unknown partner. But they have a _moral_ reason to seek a future partner’s good only if they seek a specific relationship, and they have no moral duty to do so. Thus, individuals have no moral reason to bear a child, only a moral reason to seek the good of a future child if they intend to become its parents. Pro-natalism suggests the good for the future child, and of that relationship, can weigh against expected harms to the child.

This chapter identifies three principal antinatalist arguments, from David Benatar, Seana Shiffrin, and Matti Hayry, Although they are quite different, all accord a moral priority to avoiding harm over conferring benefit in the context of procreation and all regard a strong risk aversion as the morally appropriate posture in that context. The chapter criticizes the categorical claims of all three—Benatar’s axiological asymmetry, Shiffrin’s consent argument, and Hayry’s risk argument—and maintains that it is not wrong for some prospective parents to have children in some circumstances, based on reasonable expectations about the child’s well-being and the risk that its life will go badly. The chapter also criticizes Benatar’s argument that bearing children poses an unjustifiable risk to the interests of other sentient beings. Despite rejecting anti-natalism, the chapter concludes that its proponents succeed in establishing that procreation is a morally risky activity that should not be undertaken without serious reflection.

This chapter introduces a variety of moderate pro-natalist positions by locating them between two extremes: the claim that procreation requires no defence and the claim that it is categorically or contingently indefensible. Most moderate positions are defensive—they deny the charges of harm or wrong made by anti-natalists like David Benatar and assert procreative liberty—but they provide no reasons for doing so beyond personal satisfaction and the interests of existing people. This chapter suggests the need for a more robust, affirmative justification, but one that does not recognize even a prima facie moral duty to bear children. It points out there is an ethics of procreation that supports both beliefs: that it is often permissible to have children but it is never a requirement, despite the great benefits they may enjoy. The chapter concludes with an overview of the next four chapters.

This first chapter introduces readers to the competing views on procreation that are defended in the book. The ethics of procreation, quality-of-life issues, and the so-called misanthropic position are presented as part of the arguments, especially as they are referenced in the work of Seana Shiffrin and Matti Hayry. The differences, but also the similarities, between the two positions are highlighted: one is an extreme anti-natalist position, the other is a pro-natalist position that is more permissive than most but not as extreme as some. This chapter emphasizes both that bearing a child is a morally significant activity, and that the decision to have a child demands serious reflection. The final goal of this introductory chapter is to present the plan for each subsequent chapter.

The patient preference predictor is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them with the treatments they would have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice. There are no data in this work.

New fetal therapies offer important prospects for improving health. However, having to consider both the fetus and the pregnant woman makes the risk–benefit analysis of fetal therapy trials challenging. Regulatory guidance is limited, and proposed ethical frameworks are overly restrictive or permissive. We propose a new ethical framework for fetal therapy research. First, we argue that considering only biomedical benefits fails to capture all relevant interests. Thus, we endorse expanding the considered benefits to include evidence-based psychosocial effects of fetal therapies. Second, we reject the commonly proposed categorical risk and/or benefit thresholds for assessing fetal therapy research. Instead, we propose that the individual risks for the pregnant woman and the fetus should be justified by the benefits for them and the study’s social value. Studies that meet this overall proportionality criterion but have mildly unfavorable risk–benefit ratios for pregnant women and/or fetuses may be acceptable.

New fetal therapies offer important prospects for improving health. However, having to consider both the fetus and the pregnant woman makes the risk–benefit analysis of fetal therapy trials challenging. Regulatory guidance is limited, and proposed ethical frameworks are overly restrictive or permissive. We propose a new ethical framework for fetal therapy research. First, we argue that considering only biomedical benefits fails to capture all relevant interests. Thus, we endorse expanding the considered benefits to include evidence-based psychosocial effects of fetal therapies. Second, we reject the commonly proposed categorical risk and/or benefit thresholds for assessing fetal therapy research. Instead, we propose that the individual risks for the pregnant woman and the fetus should be justified by the benefits for them and the study’s social value. Studies that meet this overall proportionality criterion but have mildly unfavorable risk–benefit ratios for pregnant women and/or fetuses may be acceptable.

Judith Jarvis Thomson recently argued that it is impermissible for a bystander to turn a runaway trolley from five onto one. But she also argues that a trolley driver is required to do just that. We believe that her argument is flawed in three important ways. She fails to give proper weight to (a) an agent¹s claims not to be required to act in ways he does not want to, (b) impartiality in the weighing of competing patient-claims, and (c) the role of patient-claims in determining agent-duties. All three of these failures can be understood in terms of what we call the Mechanics of Claims, an approach we develop for identifying and balancing competing claims in determining rights. Using that framework, one can see both why Thomson's most recent argument is mistaken, and how to think more clearly about deontological choices generally

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices.