Joseph Millum

When a person is competent, they can exercise their autonomy rights, including waiving claims against interference by giving consent. Non-competent persons, by contrast, lack these autonomy rights, which means that others are permitted to make certain decisions for them. What grounds this gulf between the rights of competent and non-competent persons? In this paper, we present a novel account of the capacities that underlie competence. Competence comprises two distinct rights: a power to alter claims and a claim against paternalistic interference with one’s decisions. While existing accounts appear to assume that the same capacities underlie both features of agential control, we argue that they have separate grounds. The capacity that grounds the power to alter claims is the capacity to value, whereas the capacity that grounds the claim against paternalistic interference is the more substantial capacity to be responsible for one’s actions. By separating these normative grounds, we solve a problem that plagues Common Grounds views. Our Separate Grounds account can explain why and in what way the decisions of persons with marginal autonomy should be respected without sacrificing the need to protect them from harm.

This book has sought to inform efforts to improve systematic, evidence-based priority-setting by assessing the state-of-the-art of methods for priority-setting, engaging with the fundamental normative issues at stake, and providing specific recommendations for improving current practice. This final chapter, written by the eight editors of this volume, provides seven key recommendations for future priority-setting in global health: (1) A more systematic approach to priority-setting in health is needed; (2) Information on cost-effectiveness is essential; (3) Distributional impact needs to be integrated; (4) Stillbirths need to be integrated; (5) Non-health effects need to be integrated; (6) Process needs to be emphasized alongside substantive criteria; and (7) New methods and tools need to be used and further developed.

Summary measures of health or well-being must assign a value to averting death and relate it to the value of preventing or curing morbidity. The authors address two key questions about how to value the prevention of death: (1) how the age at which someone dies affects how bad their death is and (2) at what age death starts to be bad for the decedent. Current practice includes, by default, views about both questions that the authors think are mistaken. Regarding (1), the authors argue in favor of _gradualism_: the value assigned to preventing mortality should gradually increase during early cognitive development, so that the prevention of perinatal deaths is assigned a lower value than the prevention of the deaths of older children. Regarding (2), value should be assigned to preventing deaths from the point of the onset of sentience—at around 28 weeks gestational age—so that the prevention of stillbirths is also valued. The authors tentatively suggest a function for calculating the disvalue of death at different ages and apply this and alternative functions to South African data on interventions to prevent stillbirths and neonatal deaths.

The available resources for global health assistance are far outstripped by need. In the face of such scarcity, many people endorse a principle according to which highest priority should be given to the worst off. However, in order for this prioritarian principle to be useful for allocation decisions, policy‐makers need to know what it means to be badly off. In this article, we outline a conception of disadvantage suitable for identifying the worst off for the purpose of making health resource allocation decisions. According to our total advantage view: (1) the worst off are those who have the greatest total lifetime disadvantage; (2) advantage foregone due to premature death should be treated in the same way as other ways of being disadvantaged at a time; (3) how badly off someone is depends on the actual outcomes that will befall her without intervention, not her prospects at a time; and (4) all significant forms of disadvantage count for determining who is worst off, not just disadvantage relating to health. We conclude by noting two important implications of the total advantage view: first, that those who die young are among the globally worst off, and second, that the epidemiological shift in the global burden of disease from communicable to non‐communicable diseases should not lead to a corresponding shift in global health spending priorities.

Most people believe that parents have moral rights and responsibilities regarding their children. These rights and responsibilities undergird the nuclear family and are essential to the flourishing of its members. However, their basis and contents are hotly contested. Do a child’s genetic parents have a right to parent her? Many people’s gut responses affirm the importance of genetic ties, but the moral justification for tying parental rights to genetics is unclear. Parents are permitted to make far-reaching decisions about their children’s medical care, education, religious practice, and discipline. When can parental rights be limited by the interests of the child or of society? Matters are no more settled regarding parental responsibilities. A man who conceives a child through voluntary sexual intercourse is commonly thought to acquire parental responsibilities, even if he took every precaution against conception. Yet sperm donors are widely thought to have no responsibilities toward their progeny. What underlies these disparate judgments? Parents are expected to do a lot for their children. But there are surely limits. Sometimes parents must balance the needs of multiple family members or just want time for themselves. What is the extent of parental responsibilities? This book provides a philosophical account of the foundations of moral parenthood. It explains how parental rights and responsibilities are acquired, what those rights and responsibilities consist in, and how parents should make decisions for their children. In doing so, it provides a set of frameworks to help solve pressing ethical dilemmas relating to parents and children.

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.

In the United States, the dominant model of decision‐making capacity (DMC) is the “four abilities model,” which judges DMC according to four criteria: understanding, appreciation, reasoning, and communicating a choice. Some critics argue that this model is “too cognitive” because it ignores the role of emotions and values in decision‐making. But so far there is no consensus about how to incorporate such factors into a model of DMC while still ensuring that patients with unusual or socially disapproved values still have their autonomous decisions respected. In this paper, we aim to give an account of the role of values in decision‐making which can answer some of the lingering questions about capacity. In the current literature, defenders of the inclusion of values in DMC tend to propose solutions which focus on the distorted or incoherent attributes of the values themselves. We argue that shifting the focus onto valuing as an ability is a better solution and that a complete picture of capacity includes understanding, appreciation, reasoning, communicating a choice, and the ability to value. On the basis of a conceptual analysis of the necessary conditions for autonomous decision‐making, we derive a conception of the ability to value. On our account, the ability to value has four components: the possession of values, the ability to access those values, the ability to engage in practical reasoning with one's values, and the ability to act on the result of that reasoning. We describe the positive components of the ability to value, some indicators of impairment, and some implications of our account.

Most parents lie to their children. They do it for fun, as a method of behaviour control, and to protect children from what they consider to be dangerous truths. At the same time, most parents bring their children up with the message that honesty is a virtue and that lying is usually wrong. How should our practice and our preaching be reconciled? In this paper, I examine the ethics of parental lies. Most philosophers who have written on the ethics of deception have focused on deception of and by autonomous adults. I therefore begin by surveying this literature. Contemporary philosophers have given three types of reason to explain what makes lying wrong (when it is wrong): negative consequences, breaches of trust, and interference with autonomy. I briefly analyze what constitutes a breach of trust and identify four factors that affect how bad a breach is. I then explicate how lying can constitute a wrongful interference with autonomy. A long-running debate concerns whether lying is ethically different than other forms of deception. I argue—briefly—that we do not need to resolve this debate in order to evaluate parental deception. Armed with a framework for what makes lying to autonomous adults wrongful, I turn to the special case of parental lying. Since the parent-child relationship is typically very close, lying to one’s child is a relatively serious breach of trust. This is exacerbated in the case of serious lies that implicate the parent-child relationship or the child’s identity. On the other hand, at least for young children, concerns about autonomy are less significant than for autonomous adults. I close by applying my analysis, along with data on the consequences of parental deception, to different types of parental lie. I argue that lying to one’s child is more rarely justified than is commonly thought, and delineate the circumstances in which it can be justified.

The curriculum design, faculty characteristics, and experience of implementing masters' level international research ethics training programs supported by the Fogarty International Center was investigated. Multiple pedagogical approaches were employed to adapt to the learning needs of the trainees. While no generally agreed set of core competencies exists for advanced research ethics training, more than 75% of the curricula examined included international issues in research ethics, responsible conduct of research, human rights, philosophical foundations of research ethics, and research regulation and ethical review process. Common skills taught included critical thinking, research methodology and statistics, writing, and presentation proficiency. Curricula also addressed the cultural, social, and religious context of the trainees related to research ethics. Programs surveyed noted trainee interest in Western concepts of research ethics and the value of the transnational exchange of ideas. Similar faculty expertise profiles existed in all programs. Approximately 40% of faculty were female. Collaboration between faculty from low- and middleincome countries (LMICs) and high-income countries (HICs) occurred in most programs and at least 50% of HIC faculty had previous LMIC experience. This paper is part of a collection of papers analyzing the Fogarty International Research Ethics Education and Curriculum Development program.

The available resources for global health assistance are far outstripped by need. In the face of such scarcity, many people endorse a principle according to which highest priority should be given to the worst off. However, in order for this prioritarian principle to be useful for allocation decisions, policy-makers need to know what it means to be badly off. In this article, we outline a conception of disadvantage suitable for identifying the worst off for the purpose of making health resource allocation decisions. According to our total advantage view: the worst off are those who have the greatest total lifetime disadvantage; advantage foregone due to premature death should be treated in the same way as other ways of being disadvantaged at a time; how badly off someone is depends on the actual outcomes that will befall her without intervention, not her prospects at a time; and all significant forms of disadvantage count for determining who is worst off, not just disadvantage relating to health. We conclude by noting two important implications of the total advantage view: first, that those who die young are among the globally worst off, and second, that the epidemiological shift in the global burden of disease from communicable to non-communicable diseases should not lead to a corresponding shift in global health spending priorities.

Clinicians and health researchers frequently encounter opportunities to rescue people. Rescue cases can generate a moral duty to aid those in peril. As such, bioethicists have leveraged a duty to rescue for a variety of purposes. Yet, despite its broad application, the duty to rescue is under-analyzed. In this paper, we assess the state of theorizing about the duty to rescue. There are large gaps in bioethicists’ understanding of the force, scope, and justification of the two most cited duties to rescue—the individual duty of easy rescue and the institutional rule of rescue. We argue that the duty of easy rescue faces unresolved challenges regarding its force and scope, and the rule of rescue is indefensible. If the duty to rescue is to help solve ethical problems, these theoretical gaps must be addressed. We identify two further conceptions of the duty to rescue that have received less attention—an institutional duty of easy rescue and the professional duty to rescue. Both provide guidance in addressing force and scope concerns and, thereby, traction in answering the outstanding problems with the duty to rescue. We conclude by proposing and propose research priorities for developing accounts of duties to rescue in bioethics

Several influential organisations have attempted to quantify the costs and benefits of expanding access to interventions—like contraceptives—that are expected to decrease the number of pregnancies. Such health economic evaluations can be invaluable to those making decisions about how to allocate scarce resources for health. Yet how the benefits should be measured depends on controversial value judgments. One such value judgment is found in recent analyses from the Disease Control Priority Network (DCPN) and the Study Group for the Global Investment Framework for Women’s and Children’s Health. Noting the decrease in the number of pregnancies expected to result from providing access to family planning, DCPN and the Study Group claim that a substantial benefit of such interventions is averting the stillbirths and child deaths that would have resulted from those pregnancies. We argue that health economic analyses should not count such averted deaths as benefits in the same way as saved lives. First, by counting averted stillbirths and child deaths as a benefit but not counting as a cost the lives of babies who survive, DCPN and the Study Group implicitly commit themselves to antinatalism. Second, this method for calculating the benefits of family planning interventions implies that infertility treatments are harmful. Determining how potential people should be treated in health economic analyses will require grappling with population ethics.

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/aids research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting.

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting.

Suppose you come to my house and I invite you in. ‘I’m just heading out’, I say, ‘but make yourself at home’. I have consented to you remaining in my house, but what else? In your home, you put your feet up on the coffee table, so may you now do that in mine? If I complain that you’ve left crumbs from eating biscuits in my bed, can you defend yourself on the grounds that I told you to make yourself at home? These questions concern the scope of my consent. How we should ascertain the scope of someone's consent is the topic of Tom Dougherty's book.The book is divided into three main parts, each corresponding to a view about what fixes the scope of consent: the mental account, the successful communication account, and the evidential account, which Dougherty favours.Versions of the mental account have in common that they think consent can be granted without any behavioural signal. Provided that the person granting consent has the appropriate mental state, they can grant permission to the recipient of consent, even if they do nothing to communicate the consent. Proponents of these views, Dougherty argues, should adopt a principle according to which the scope of consent is fixed by what the consent-giver intends to permit. However, Dougherty rejects the mental account on the grounds that consent requires some sort of publicity so that we can hold each other accountable: ‘what you do in the privacy of your own mind is not enough to waive your rights in the public sphere’ (p. 60).

Several influential organisations have attempted to quantify the costs and benefits of expanding access to interventions-like contraceptives-that are expected to decrease the number of pregnancies. Such health economic evaluations can be invaluable to those making decisions about how to allocate scarce resources for health. Yet how the benefits should be measured depends on controversial value judgments. One such value judgment is found in recent analyses from the Disease Control Priority Network (DCPN) and the Study Group for the Global Investment Framework for Women's and Children's Health. Noting the decrease in the number of pregnancies expected to result from providing access to family planning, DCPN and the Study Group claim that a substantial benefit of such interventions is averting the stillbirths and child deaths that would have resulted from those pregnancies. We argue that health economic analyses should not count such averted deaths as benefits in the same way as saved lives. First, by counting averted stillbirths and child deaths as a benefit but not counting as a cost the lives of babies who survive, DCPN and the Study Group implicitly commit themselves to antinatalism. Second, this method for calculating the benefits of family planning interventions implies that infertility treatments are harmful. Determining how potential people should be treated in health economic analyses will require grappling with population ethics.

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating health research resources. Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs.

Background: In prevalence studies of sexually transmitted infections (STIs), investigators often provide syndromic management for symptomatic participants, but may not provide specific treatment for asymptomatic individuals with positive laboratory test results due to the delays between sample collection and availability of results as well as logistical constraints in recontacting study participants. Methods: To characterize the extent of this issue, 80 prevalence studies from the World Health Organization’s Report on global sexually transmitted infection surveillance, 2018, were reviewed. Studies were classified as to whether clinically relevant positive results were returned or if this was not specified. Results: More than half (56%) of the cited studies did not specify if participants were notified of clinically relevant positive STI test results. The percentages were similar for low- and middle-income country populations (57%) and high-income country populations (53%). Conclusions: The absence of documentation of the provision of test results raises the possibility that in some instances, results may not have been communicated, with potential negative effects for participants, their sexual partners, and newborns. From an ethical perspective, clinically relevant results should be returned to study participants and treating clinicians in a timely fashion to ensure appropriate management of identified infections. Study authors should document if they returned test results to study participants and report on numbers lost to follow-up.

This volume offers a carefully argued, compelling theory of bioethics while eliciting practical implications for a wide array of issues including medical assistance-in-dying, the right to health care, abortion, animal research, and the definition of death. The authors' dual-value theory features mid-level principles, a distinctive model of moral status, a subjective account of well-being, and a cosmopolitan view of global justice. In addition to ethical theory, the book investigates the nature of harm and autonomous action, personal identity theory, and the 'non-identity problem' associated with many procreative decisions. Readers new to particular topics will benefit from helpful introductions, specialists will appreciate in-depth theoretical explorations and a novel take on various practical issues, and all readers will benefit from the book's original synoptic vision of bioethics. This title is also available as Open Access on Cambridge Core.

This chapter explores the foundation and content of the duty to respect persons. The authors argue that it is best understood as a duty to recognize people’s rights. Respect for persons therefore has specific implications for how competent and non-competent persons ought to be treated in research. For competent persons it underlies the obligation to obtain consent to many research procedures. The chapter gives an analysis of the requirements for obtaining valid consent. It then considers respect for persons as it relates to four common topics: the therapeutic misconception, research with children and adolescents, the use of deception in research, and research on competent adults without their consent.

Over the last few decades, multiple studies have examined the understanding of participants in clinical research. They show variable and often poor understanding of key elements of disclosure, such as expected risks and the experimental nature of treatments. Did the participants in these studies give valid consent? According to the standard view of informed consent they did not. The standard view holds that the recipient of consent has a duty to disclose certain information to the profferer of consent because valid consent requires that information to be understood. The contents of the understanding and disclosure requirements are therefore conceptually linked. In this paper, we argue that the standard view is mistaken. The disclosure and understanding requirements have distinct grounds tied to two different ways in which a token of consent can be rendered invalid. Analysis of these grounds allows us to derive the contents of the two requirements. It also implies that it is sometimes permissible to enroll willing participants who have not understood everything that they ought to be told about their clinical trials.

Proposals for allocating scarce lifesaving resources in the face of the Covid-19 pandemic have aligned in some ways and conflicted in others. This paper attempts a kind of priority setting in addressing these conflicts. In the first part, we identify points on which we do not believe that reasonable people should differ—even if they do. These are (i) the inadequacy of traditional clinical ethics to address priority-setting in a pandemic; (ii) the relevance of saving lives; (iii) the flaws of first-come, first-served allocation; (iv) the relevance of post-episode survival; (v) the difference between age and other factors that affect life-expectancy; and (vi) the need to avoid quality-of-life judgments. In the second part, we lay out some positions on which reasonable people can and do differ. These include (i) conflicts between maximizing benefits and priority to the worst off; (ii) role-based priority; and (iii) whether patients’ existing lifesaving resources should be subject to redistribution.