This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of accurately measuring the welfare (...) burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (shrink)

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. (shrink)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap and argues that all (...) are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

Noninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. (...) To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation... (shrink)

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. (shrink)

While procreation is ubiquitous, attention to the ethical issues involved in creating children is relatively rare. In Debating Procreation, David Benatar and David Wasserman take opposing views on this important question. David Benatar argues for the anti-natalist view that it is always wrong to bring new people into existence. He argues that coming into existence is always a serious harm and that even if it were not always so, the risk of serious harm is sufficiently great to make procreation wrong. (...) In addition to these "philanthropic" arguments, he advances the "misanthropic" one that because humans are so defective and cause vast amounts of harm, it is wrong to create more of them.David Wasserman defends procreation against the anti-natalist challenge. He outlines a variety of moderate pro-natalist positions, which all see procreation as often permissible but never required. After criticizing the main anti-natalist arguments, he reviews those pronatalist positions. He argues that constraints on procreation are best understood in terms of the role morality of prospective parents, considers different views of that role morality, and argues for one that imposes only limited constraints based on the well-being of the future child. He then argues that the expected good of a future child and of the parent-child relationship can provide a strong justification for procreation in the face of expected adversities without giving individuals any moral reason to procreate. (shrink)

How should we respond to individuals with disabilities? What does it mean to be disabled? Over fifty million Americans, from neonates to the fragile elderly, are disabled. Some people say they have the right to full social participation, while others repudiate such claims as delusive or dangerous. In this compelling book, three experts in ethics, medicine, and the law address pressing disability questions in bioethics and public policy. Anita Silvers, David Wasserman, and Mary B. Mahowald test important theories of justice (...) by bringing them to bear on subjects of concern in a wide variety of disciplines dealing with disability. They do so in the light of recent advances in feminist, minority, and cultural studies, and of the groundbreaking Americans with Disabilities Act. (shrink)

This collection of essays investigates the obligations we have in respect of future persons, from our own future offspring to distant future generations.

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. (shrink)

Although philosophers have explored several connections between neuroscience and moral responsibility, the issue of how real-world neurological modifications, such as Deep Brain Stimulation, impact moral responsibility has received little attention. In this article, we draw on debates about the relevance of history and manipulation to moral responsibility to argue that certain kinds of neurological modification can diminish the responsibility of the agents so modified. We argue for a historicist position - a version of the history-sensitive reflection view - and defend (...) that account against a rival, relational view of responsibility. We conclude that DBS can, under certain conditions, diminish responsibility, and explore the circumstances under which this might be so. We conclude by suggesting that philosophical debates about moral responsibility, manipulation, and history have greater practical relevance than is sometimes thought, and that attention to practical cases can help inform and deepen this body of scholarship. (shrink)

Jon Elster reports that in 1940, and again in 1970, the U.S. draft lottery was challenged for falling short of the legally mandated ‘random selection’. On both occasions, the physical mixing of the lots appeared to be incomplete, since the birth dates were clustered in a way that would have been extremely unlikely if the lots were fully mixed. There appears to have been no suspicion on either occasion that the deficiency in the mixing was intended, known, or believed to (...) favor or disfavor any identifiable group. If the selection was non-random in the way charged, Elster asks, was it unfair? (shrink)

Disability and enhancement are often treated as opposing concepts. To become disabled in some respect is to move away from those who are enhanced in that same respect; to become enhanced is to move away from the corresponding state of disability. This chapter examines how best to understand the concepts of disability and enhancement in this symmetrical way. After considering various candidates, two types of accounts are identified as the most promising: welfarist accounts and typical-functioning accounts. The authors ultimately defend (...) a complex typical-functioning account as the best way to achieve a symmetrical understanding of disability and enhancement. (shrink)

This paper examines the moral import of a distinction between natural and social inequalities. Following Thomas Nagel, it argues for a “denatured” distinction that relies less on the biological vs. social causation of inequalities than on the idea that society is morally responsible for some inequalities but not others. It maintains that securing fair equality of opportunity by eliminating such social inequalities has particularly high priority in distributive justice. Departing from Nagel, it argues that society can be responsible for inequalities (...) not only when they are the unintended result of justifiable projects, but even when their alleviation would be very costly. Sharing Nagel’s general concept of ‘social inequality’, then, this paper proposes a far more expansive conception. We argue that many disadvantages due to disability fall under this conception. Eliminating or alleviating those disadvantages should be regarded as securing fair equality of opportunity, not improving the condition of the worst-off. (shrink)

In his thoughtful defence of very modest moral enhancement, David DeGrazia1 makes the following assumption: ‘Behavioural improvement is highly desirable in the interest of making the world a better place and securing better lives for human beings and other sentient beings’. Later in the paper, he gives a list of some psychological characteristics that ‘all reasonable people can agree … represent moral defects’. I think I am a reasonable person, and I agree that most if not all items on the (...) lists do represent moral defects—I certainly would regard them as such in a close family member or friend. But if I were in the business of ‘making the world a better place and securing better lives for human beings and other sentient beings’, I would hesitate to prescribe moral enhancement for everyone with these acknowledged defects. A lot of good work, from removing tumours to negotiating treaties, may be best done by people with serious moral defects.For a simple consequentialist, a moral defect is just a trait that tends to make the world a worse place. Not being a consequentialist, I think that moral defects should be identified independently of their tendency to produce worse outcomes. For this reason, I think it's necessary to qualify DeGrazia's starting assumption—I think behavioural improvement may sometimes be undesirable if our goal is to make the world a better place. My reasons will be familiar to readers of Bernard Williams.As …. (shrink)

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 this comprehensive collection of essays, most of which appear for the first time, eminent scholars from many disciplines—philosophy, economics, sociology, political science, demography, theology, history, and social psychology—examine the causes, nature, and consequences of present-day consumption patterns in the United States and throughout the world.

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and (...) quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)

It is commonly thought that disability is a harm or “bad difference” because having a disability restricts valuable options in life. In his recent essay “Disability, Options and Well-Being,” Thomas Crawley offers a novel defense of this style of reasoning and argues that we and like-minded critics of this brand of argument are guilty of an inconsistency. Our aim in this article is to explain why our view avoids inconsistency, to challenge Crawley's positive defense of the Options Argument, and to (...) suggest that this general line of reasoning employs a double standard. (shrink)

In their comprehensive article, Bayefsky and Berkman outline a framework for limiting access to certain types of fetal genetic information through professional self-regulation. Given the rap...

Ingmar Persson and Julian Savulescu1 warn of our destruction by the cognitively enhanced beings we create. Now, in a fascinating paper, Nicholas Agar2 warns of an even more disturbing prospect: cognitively enhanced beings may be entitled to sacrifice us for their own ends. These post-humans would likely conclude that they had higher moral status than we mere human beings, and we would have good reason to defer to their vastly superior moral knowledge. We would lack even the consolation of moral (...) complaint.I will question both these claims: that we would have good reason to accept the conclusion of cognitively enhanced beings that they had superior moral status, and that they would be likely to reach such a conclusion . I will also question whether, if they were to have higher moral status, it would be wrong to create them, because it would be wrong to create beings with such costly needs.Agar argues that moral truths, including those about moral status, are like mathematical truths in eventually yielding to expert reasoning. This belief in moral enlightenment is extreme even for a moral realist. Michael Smith,3 whom Agar cites, merely adduces the gradual consensus that has emerged about issues that were once the subject of seemingly intractable disagreement: slavery, workers’ and women's rights and democracy. One may agree with Smith about slow, halting, moral progress, …. (shrink)

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. (shrink)

The essays in this volume apply philosophical analysis to address three kinds of questions: What are the implications of genetic science for our understanding of nature? What might it influence in our conception of human nature? What challenges does genetic science pose for specific issues of private conduct or public policy?

In this 2001 volume a group of leading philosophers address some of the basic conceptual, methodological and ethical issues raised by genetic research into criminal behavior. The essays explore the complexities of tracing any genetic influence on criminal, violent or antisocial behavior; the varieties of interpretations to which evidence of such influences is subject; and the relevance of such influences to the moral and legal appraisal of criminal conduct. The distinctive features of this collection are: first, that it advances public (...) discussion while clarifying the debate about genetic research and criminal behavior; second, that it explains scientific controversies about behavioral genetics in lucid, non-technical terms; third, that it demonstrates how the possible findings on genetics and crime bear on fundamental issues of moral and criminal responsibility. The volume will be of particular value to philosophers concerned with applied ethics, behavioral geneticists, psychologists, legal theorists, and criminologists. (shrink)

This imaginative guide to decision-making about prenatal genomics is situated in a not-too-distant future in which parents can easily choose among embryos from gametes that have been produced in a laboratory using their own skin cells. Readers are invited into a future vision of conscientious parenting that involves testing to protect, rather than to select, a future child.

A growing literature testifies to the persistence of place as an incorrigible aspect of human experience, identity, and morality. Place is a common ground for thought and action, a community of experienced particulars that avoids solipsism and universalism. It draws us into the philosophy of the ordinary, into familiarity as a form of knowledge, into the wisdom of proximity. Each of these essays offers a philosophy of place, and reminds us that such philosophies ultimately decide how we make, use, and (...) understand places, whether as accidents, instruments, or fields of care. (shrink)

In this article I want to ask what we should do, either collectively or individually, if we could identify by genetic and family profding the 12% of the male population likely to commit almost half the violent crime in our society. What if we could identify some individuals in that 12% not only at birth, but in utero, or before implantation? I will explain the source of these figures later; for now, I will use them only to provide a concrete (...) example of the kind of predictive claims we can expect to be made with some frequency, and some scientific credibility, over the next generation. I will adopt an outlook that one commentator has called “pragmatic optimism,” but which could also be called technological optimism - the belief that a science or technology will achieve many or most of its advertised goals. My optimism will be directed towards human behavioral genetics, the source of predictions like the one I just offered; I will assume that this controversial discipline will achieve a substantial pan of its scientific ambition to identlfy genetic differences among individuals that help predict and possibly explain future behavior, psychological health, and cognitive skill. This optimism is very limited -it concerns the scientific success of behavioral genetics, not the social value of that success. (shrink)

The American Journal of Bioethics, Volume 12, Issue 8, Page 30-31, August 2012.

Disability raises profound and fundamental issues: questions about human embodiment and well-being; dignity, respect, justice and equality; personal and social identity. It raises pressing questions for educational, health, reproductive, and technology policy, and confronts the scope and direction of the human and civil rights movements. Yet it is only recently that disability has become the subject of the sustained and rigorous philosophical inquiry that it deserves. The Oxford Handbook of Philosophy and Disability is the first comprehensive volume on the subject. (...) The volume's contents range from debates over the definition of disability to the challenges posed by disability for justice and dignity; from the relevance of disability for respect, other interpersonal attitudes, and intimate relationships to its significance for health policy, biotechnology, and human enhancement; from the ways that disability scholarship can enrich moral and political philosophy, to the importance of physical and intellectual disabilities for the philosophy of mind and action. The contributions reflect the variety of areas of expertise, intellectual orientations, and personal backgrounds of their authors. Some are founding philosophers of disability; others are promising new scholars; still others are leading philosophers from other areas writing on disability for the first time. Many have disabilities themselves. This volume boldly explores neglected issues, offers fresh perspectives on familiar ones, and ultimately expands philosophy's boundaries. More than merely presenting an overview of existing work, this Handbook will chart the growth and direction of a vital and burgeoning field for years to come. (shrink)

abstract In this paper, we examine issues raised by the possibility of regulating emotions through pharmacological means. We argue that emotions induced through these means can be authentic phenomenologically, and that the manner of inducing them need not make them any less our own than emotions arising 'naturally'. We recognize that in taking drugs to induce emotions, one may lose opportunities for self-knowledge; act narcissistically; or treat oneself as a mere means. But we propose that there are circumstances in which (...) none of these concerns arise. Finally, we consider how the possibility of drug-regulation might affect duties to feel emotions. (shrink)

The ability to sequence individual genomes is leading to the identification of an increasing number of genetic risk factors for serious diseases. Knowledge of these risk factors can often provide significant medical and psychological benefit, but also raises complex ethical and social issues. This paper focuses on one area of rapid progress: the identification of mutations causing long QT syndrome and other cardiac channel disorders, which can explain some previously unexplained deaths in infants (SIDS) and children and adults (SUDS) and (...) prevent others from occurring. This genetic knowledge, discovered posthumously in many cases, has implications for clinical care for surviving family members who might carry the same mutations. The information obtained from genetic testing, in the context of personal and family history, can guide individually tailored interventions that reduce risk and save lives. At the same time, obtaining and disclosing genetic information raises difficult issues about confidentiality and decision making within families. We draw on the experience of the Montefiore-Einstein Center for Cardiogenetics, which has played a leading role in the genetic diagnosis and clinical management of cardiac channel diseases, to explore some of the challenging ethical questions arising in affected families with adolescent children. We focus on the related issues of (1) family confidentiality, privacy and disclosure and (2) adolescent decision making about genetic risk, and argue for the value of interdisciplinary dialogue with affected families in resolving these issues. (shrink)