Leslie Francis

When the Covid‐19 pandemic reached the United States in spring 2020, many states and hospitals announced crisis standards of care plans that used age as a categorical exclusion criterion. Such age choosing was quickly flagged as discriminatory, and so some states and hospitals shifted to embedding age as a tiebreaker deeper in their plans. Different rationales were given for using age as a tiebreaker: that younger patients were more likely to survive than older patients, that saving younger patients would save more life years, and that younger patients deserved a chance to live through life's stages. We provide a critical analysis of these three rationales, noting the differences between them, and then questioning the ethical and legal justifications for such age choosing.

Since testing for HIV infection became possible in 1985, testing of pregnant women has been conducted primarily on a voluntary, ‘opt-in’ basis. Faden, Geller and Powers, Bayer, Wilfert, and McKenna, among others, have suggested that with the development of more reliable testing and more effective therapy to reduce maternal-fetal transmission, testing should become either routine with ‘opt-out’ provisions or mandatory. We ask, in the light of the new rapid tests for HIV, such as OraQuick, and the development of antiretroviral treatment that can reduce maternal-fetal transmission rates to <2%, whether that time is now. Illustrating our argument with cases from the United States (US), Kenya, Peru, and an undocumented Mexican worker in the US, we show that when testing is accompanied by assured multi-drug therapy for the mother, the argument for opt-out or mandatory testing for HIV in pregnancy is strong, but that it is problematic where testing is accompanied by adverse events such as spousal abuse or by inadequate intrapartum or follow-up treatment. The difference is not a ‘double standard’, but reflects the presence of conflicts between the health interests of the mother and the fetus – conflicts that would be abrogated by the assurance of adequate, continuing multi-drug therapy. In light of these conflicts, where they still occur, careful processes of informed consent are appropriate, rather than opt-out or mandatory testing.

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community.

Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot be sure whether their behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of “prosthetic” thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice.

Health care insurance schemes, whether private or public, are notoriously unaccommodating to individuals with disabilities. While most nonelderly nondisabled persons in the U.S. are insured through private sources, coverage sources for nonelderly persons with disabilities have traditionally been a mix of private and public coverage. For all age groups, the employment-to-population ratio is much lower for persons with a disability than for those with no disability. Moreover, employed persons with a disability were more likely to be self-employed than those with no disability. As a group, therefore, nonelderly people with disabilities have not been as well positioned as others to obtain private health care insurance because in the U.S., acquiring such coverage usually is employer based.

Pandemic emergencies and concomitant needs for interventions to protect public health place great pressure on individual liberty. In the United States, these pressures are exacerbated by views of negative liberty as the freedom to do whatever one wants with one’s person. This essay argues that the original US Supreme Court decision recognizing legislative powers to protect public health, Jacobson v. Massachusetts, was premised on an understanding of freedom of the person as limited by risks to others. Later court decisions have departed from this analysis, instead viewing individual liberties over the person as conflicting with public health. This jurisprudential approach pitting unlimited individual liberty rights over the person against public health contributes to the tensions in the U. S. over mask wearing and restrictions on religious services during COVID-19.

A number of recent legal cases in the United States have considered both disability‐based exceptions to Covid‐19‐related mask mandates and disability‐based claims to stronger masking rules in states restricting the abilities of local governments to enforce mask mandates. We argue that a proper legal and ethical analysis of such cases requires understanding the distinction between disability accommodations and disability modifications. Disability accommodations are individualized adjustments that enable qualified individuals to perform jobs or achieve access on terms comparable to those experienced by others. Disability modifications are programmatic changes to structures or policies that increase accessibility. We contend that in the context of mask mandates, modifications rather than accommodations are ethically desirable because modification‐oriented policies promote disability access in a way that treats all individuals fairly, avoiding the risk of promoting misinformation and uncertainty about the health benefits of masking.

In matters such as affirmative action or home schooling, rights of ethnic and other minority groups often come into conflict with those of society in a culturally diverse population such as ours. But before considering the dilemmas posed by these issues, we must first ask such basic but important questions as what group rights are and how they intersect with the principles of democracy. This new collection brings together some of today's leading thinkers from the cutting edge of these debates, taking in a broad range of issues confronting philosophers, sociologists, and political scientists. Contributors such as Carl Wellman, Carol Gould, and Rex Martin examine the nature of groups and the conflict between group rights and democracy and also consider case studies depicting current issues in cultural, ethnic, and religious rights. The first section, on the nature of groups, examines some of the perplexing alternatives in the formulation of a theory of group rights. These articles investigate the kinds of rights minorities might claim and ask when groups can be held responsible for the acts of some of their members. The second section addresses the treatment of groups in a democracy and the precarious balance between indifference toward minorities and capitulation to their demands. Here the contributors examine five principles for the sensitive treatment of minority and disadvantaged groups in a democratic society. A final section explores specific conflicts between subgroup and societal claims through case studies dealing with affirmative action, religious practice and the education of children, and the land rights of indigenous peoples. By drawing on the legal and political dilemmas related to these cases, the authors confront issues of core versus peripheral interests, of individual member versus subgroup rights, and of the possibilities for social openness raised in the preceding sections Written from varied perspectives, Groups and Group Rights offers stimulating reading for both students and professionals as it takes on some of the most pressing dilemmas confronting our society.

This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.

People with cognitive impairments often have difficulties formulating, understanding, or articulating decisions that others judge reasonable. The frequent response shifts decision-making authority to substitutes through advance directives of the person or guardianship orders from a court. The Convention on the Rights of People with Disabilities defends supported decision-making as an alternative to such forms of supplanted decision-making. But supported decision-making raises both metaphysical questions—what is required for a decision to be the person’s own?—and epistemological questions: how do we know what persons judge to be their good, when they have difficulty conceptualizing and articulating? It raises practical questions, too, such as protection against risks of exploitation. This article uses a non-discrimination account of legal personhood drawn from the CRPD to explore how common features of decisions employed by people without cognitive disabilities are important in supported decision-making too. These features include prostheses, guardrails, relationships, and social contexts.