How does death help us understand the living? Death is more than the last event of life; it is interwoven into our growth, development, protection against disease, and more. It influences the direction of entire species via the cycle of a lifespan, and it involves asking many fascinating questions. How do we differentiate between life and death, though? How do we know when a person, animal, or cell is really dead? How much grey area is there in the science? Why do we age? Can we do anything about it? Scientifically, there's much we can learn about a living thing from its cells. In all living things, cells seem to carry "death" gene programs. Some living organisms have created systems to use these to their own advantage. Humans, for example, use the death of specific cells to hone our immune system and to give us fingernails and hair. Perhaps the most dramatic use occurs during the metamorphosis of insects and frogs. Even single-celled organisms use "quorum sensing" to eliminate some cells to ensure the overall survival of their colony in harsh environments. Thus, there is more to death than just dying. This latest book from science writer Gary C. Howard ties together the many ways that death helps us understand life. He synthesizes the involvement and relation of cells, tissues, organisms, and populations, explaining what happens at the end of life. Between discussions about popular topics such as the ethics of extending life and cell regeneration, Howard also answers fascinating questions about life and death. The resulting book examines how the end of life is determined and what we can learn from this process.

Healthcare providers are constantly confronted with illness and injury, and the challenges of healing. Yet this very work, the relief of suffering, inflicts on healthcare providers suffering of their own that is often crippling. The most common terms for the pain caregivers and healers suffer from are burnout and moral distress. These common terms are, however, often used judgmentally—as if those trying to heal others have failed themselves, their colleagues, and their patients. The net result is that much discussion of burnout and moral distress, and the interventions they underwrite, have served only to worsen the crisis. Into the Field of Suffering: Finding the Other Side of Burnout provides a much-needed reframing of burnout and moral distress. These depleting experiences are approached as trials virtually inevitable in the course of the healer's vocation. The challenge medical professionals and caregivers face is not avoiding them, but meeting them directly with insight into the role of moral distress and burnout in the development of their vocation. Into the Field of Suffering presents a set of analytical frameworks and awareness skills, which have the potential to transform the work of healers and caregivers. There is a growing body of academic literature on these topics, and many memoirs recounting distressing situations and wounding traumas. Into the Field of Suffering takes its place alongside these works, while offering a distinctly different approach that treats as essential the spiritual dimension of the healing vocation. Practices, teachings and dialogues to assist in the cultivation of compassion and gratitude are key components in this presentation. Schenck and Neely address their readers in a direct voice, speaking to the sense of failure and discouragement so many healthcare professionals and caregivers experience on a daily basis. This is a book that carries a mentor's voice and presence, born out of experience with burnout and moral distress, and grounded in hundreds of conversations, de-briefings and interviews with healthcare workers and caregivers, patients and families.

T. H. Huxley (1825-1895) was not only an active protagonist in the religious and scientific upheaval that followed the publication of Darwin's theory of evolution but also a harbinger of the sociobiological debates about the implications of evolution that are now going on. His seminal lecture Evolution and Ethics, reprinted here with its introductory Prolegomena, argues that the human psyche is at war with itself, that humans are alienated in a cosmos that has no special reference to their needs, and that moral societies are of necessity in conflict with the natural conditions of their existence. Seen in the light of current understanding of the mechanisms of evolution, these claims remain as controversial today as they were when Huxley proposed them. In this volume George Williams, one of the best-known evolutionary biologists of our time, asserts that recent biological ideas and data justify a more extreme condemnation of the "cosmic process" than Huxley advocated and more extreme denial that the forces that got us here are capable of maintaining a viable world. James Paradis, an expert in Victorian studies, has written an introduction that sets the celebrated lecture in the context of cultural history, revealing it to be an impressive synthesis of Victorian thinking, as well as a challenge to eighteenth-century assumptions about the harmony of of nature. With Huxley's lecture as a focal point, the three parts of this book unite philosophy and science in a shared quest that recalls their common origins as systems of knowledge.

Originally published in 1989.

The Princeton Legacy Library uses the latest print-on-demand technology to again make available previously out-of-print books from the distinguished backlist of Princeton University Press. These paperback editions preserve the original texts of these important books while presenting them in durable paperback editions. The goal of the Princeton Legacy Library is to vastly increase access to the rich scholarly heritage found in the thousands of books published by Princeton University Press since its founding in 1905.

As noted in Volume 1, the Yearbook series alternates between a biennial volume tracing recent theological discussions on topics in bioethics and a biennial volume tracing recent regional discussions in bioethics. Volume 2 provides for the first time a comprehensive single-volume summary of recent international and regional developments on specific topics in bioethics. To give uniformity to the discussions all authors were asked to report on the following topics: new reproductive technologies, abortion, maternal-fetal conflicts, case of severely disabled newborns, consent of treatment and experimentation, confidentiality, equitable access to health care, ethical concerns raised by cost-containment measures, decisions to withhold or withdraw life-sustaining treatment, active euthanasia, the definition of death, organ donation and transplantation. The internationally respected contributors report on the following 16 areas: the United States, Canada, Latin America, the United Kingdom and Ireland, France, the Netherlands, Germany/Austria/Switzerland, Eastern Europe, Spain/Portugal/Italy/Scandinavia, India, Southeast Asia, China, Japan, Australia/New Zealand, Council of Europe/EEC. The commentators draw on three sets of resources: Statutes, legislative proposals, and regulatory changes that directly influence, or have implications for, areas of bioethical concern; Case law and court judgments that shape, either decisively or suggestively, recent legal interpretations of particular issues of areas in bioethics; Formal statements of governmentally appointed commissions, advisory bodies, and representative professional groups, as well as less formal statements and recommendations of other organisations. In addition to providing timely summaries of recent developments, the volume offers rich and useful bibliographical references to a wide array of documents, many of which would be difficult for readers to learn about, given the lack of centralized international collection of such documents. The Yearbook should be widely consulted by all bioethicists, public policy analysts, lawyers and theologians.

The editors of the Philosophy and Medicine series recognize with grat itude the foresight, understanding, hard labor, and patience of Prof. Kazumasa Hoshino. It is his perseverance that has made this volume a reality. It was his faith in ideas that brought together a cluster of scholars in Tokyo on September 2-4, 1994, at Sophia University for a U. S. -J apan Bioethics Congress. With the support of the Foundation for Advance ment of International Science, the Japan Foundation Center for Global Partnership, the Foundation of Thanatology, the Japanese Center for Quality of Life Studies, and Sophia University, scholars from Canada, Germany, Japan, and the United States were able to explore the differ ences and similarities in their approaches to bioethics and health care policy. That conference first produced a volume through Shibunkaku Publishers of Kyoto that appeared in 1995 in J apanese: The Dignity of Death, edited by Kazumasa Hoshino. Selections from those materials have been reworked for an English audience and now appear, along with new essays, in this volume. The field of comparative bioethics is only in its infancy. We are deeply grateful to Prof. Kazumasa Hoshino, one of the fathers of J apanese bioethics, for having made this volume possible. H. Tristram Engelhardt, Jr. Stuart F. Spicker Vll ACKNOWLEDGEMENTS This volume's editors and Kluwer Academic Publishers wish to thank Shibunkaku Press, Kyoto, Japan, for permission to publish, without charge, essays derived from the U. S."

How is it that, at the beginning of the twenty-first century, it is still possible for males and females to be denied their inherent right to keep all the body parts with which they were born?

Circumcision is a cultural phenomenon that affects 15.3 million children and young adults annually. In terms of gender, 13.3 millions boys and 2 million girls are subjected to the involuntary removal of part or all of their external sex organs every year. Few people, however, ask why such practices persist or how modern societies can tolerate this inherent violation of human rights. The problem of female circumcision is being addressed on an international level, while male circumcision remains a subject many academics are reluctant to fully or impartially examine. This book explores the problem of male and female circumcision in modern society from religious, anthropological, psychological, medical, legal, and ethical perspectives.

Bodily Integrity and the Politics of Circumcision: Culture, Controversy, and Change illuminates the vulnerability of human society to medical, economic, and historical pressures. It provides a much-needed, thoughtful, and detailed analysis of the devastating impact of circumcision on bodily integrity and human rights, and it provides hope for change.

This book addresses the many ethical issues and extraordinary risks that nurses and others are facing during the COVID-19 pandemic, which creates physical, emotional, and economic burdens, affecting nurses' overall health and well-being. Nurses are essential front-line clinicians across all health care settings and in every nation. The COVID-19 pandemic caused by the novel SARs-CoV-2 virus has affected children, adults, and communities within and across all societies. Nurses, too, have contracted the virus and died from the disease. They have also seen their colleagues, family members, and friends hospitalized or in intensive care units struggling to survive. Nursing's professionalism and disciplinary resolve to care for patients and families amidst confusion, misinformation, and shifting guidelines has been called "heroic" by the public. How much risk should nurses be expected to accept during a pandemic? How do nurses help patients and families find comfort and dignity at the end-of-life? How do we help nurses who are suffering from moral distress and mental health concerns from what they have seen, been asked to do, or are unable to provide? And, how does society move forward from a pandemic that has challenged our basic ethical principles of justice and what is "fair, good and right" in caring for those who need care, including the most vulnerable and nurses themselves? This book addresses these and other ethical concerns that nurses are facing in their day-to-day clinical practice; experiences shared with patients, families, and colleagues. Although this book was written while the pandemic was still raging across the United States and globally, the events needed to be told as they were unfolding. This book helps us to learn from both the successes and failures that are affecting so many across the globe, including those on whom the public relies on to provide quality, compassionate, and expert care when they are sick: nurses.

In "Enhancing Evolution," leading bioethicist John Harris dismantles objections to genetic engineering, stem-cell research, designer babies, and cloning and makes an ethical case for biotechnology that is both forthright and rigorous. Human enhancement, Harris argues, is a good thing--good morally, good for individuals, good as social policy, and good for a genetic heritage that needs serious improvement. "Enhancing Evolution" defends biotechnological interventions that could allow us to live longer, healthier, and even happier lives by, for example, providing us with immunity from cancer and HIV/AIDS. Further, Harris champions the possibility of influencing the very course of evolution to give us increased mental and physical powers--from reasoning, concentration, and memory to strength, stamina, and reaction speed. Indeed, he says, it's not only morally defensible to enhance ourselves; in some cases, it's morally obligatory.

In a new preface, Harris offers a glimpse at the new science and technology to come, equipping readers with the knowledge to assess the ethics and policy dimensions of future forms of human enhancement.

Winner of the NCTE George Orwell Award for Distinguished Contribution to Honesty and Clarity in Public Language Although Roe v. Wade identified abortion as a constitutional right in1973, it still bears stigma-a proverbial scarlet A. Millions of Americans have participated in or benefited from an abortion, but few want to reveal that they have done so. Approximately one in five pregnancies in the US ends in abortion. Why is something so common, which has been legal so long, still a source of shame and secrecy? Why is it so regularly debated by politicians, and so seldom divulged from friend to friend? This book explores the personal stigma that prevents many from sharing their abortion experiences with friends and family in private conversation, and the structural stigma that keeps it that way. In public discussion, both proponents and opponents of abortion's legality tend to focus on extraordinary cases. This tendency keeps the national debate polarized and contentious, and keeps our focus on the cases that occur the least. Professor Katie Watson focuses instead on the cases that happen the most, which she calls "ordinary abortion." Scarlet A gives the reflective reader a more accurate impression of what the majority of American abortion practice really looks like. It explains how our silence around private experience has distorted public opinion, and how including both ordinary abortion and abortion ethics could make our public exchanges more fruitful. In Scarlet A, Watson wisely and respectfully navigates one of the most divisive topics in contemporary life. This book explains the law of abortion, challenges the toxic politics that make it a public football and private secret, offers tools for more productive private exchanges, and leads the way to a more robust public discussion of abortion ethics. Scarlet A combines storytelling and statistics to bring the story of ordinary abortion out of the shadows, painting a rich, rarely seen picture of how patients and doctors currently think and act, and ultimately inviting readers to tell their own stories and draw their own conclusions. The paperback edition includes a new preface by the author addressing recent cultural developments in abortion discourse and new legal threats to reproductive rights, and updated statistics throughout.

For the first time, based on an extensive survey conducted across the whole of Europe by the Association Descartes, the details of over 1,000 persons and organisations are now available. The Directory is broken down into 14 sections : the first section is devoted to European institutions; the next twelve cover each EEC country and list the names of persons and organisations involved in bioethics; a complementary listing covers indispensable persons or organisations; A reference work both for researchers and anybody concerned with bioethics.

Medical innovation as it stands today is fundamentally unsustainable. There is a widening gap between what biomedical research promises and the impact that it is currently achieving, in terms of patient benefit and health system improvement. This book highlights the global problem of the ineffective translation of bioscience innovation into health system improvements and its consequences, analyses the underlying causative factors and provides powerful prescriptions for change to close the gap. It contrasts the progress in biomedicine with other areas of scientific and technological endeavour, such as information technology, in which there are faster and more reliable returns for society. The author's career has spanned pharmaceuticals, diagnostics and health informatics and he draws lessons from a host of case examples in which bottlenecks have prevented progress, such as in dementia and antibiotic-resistant infections, and from many in which these barriers have been overcome, such as HIV therapy and targeted cancer treatment. The new era of precision medicine holds the greatest promise of closing this 'innovation gap'. Along with techniques such as open innovation and adaptive development, powerful new genomics and digital health tools are poised to transform the productivity of life sciences. Bioscience-Lost in Translation? lays out a fresh and provocative strategy for advancing the innovation process, shaping the right policy environment and building an ecosystem to deliver the 21st century cures that are urgently needed.

Bioethical issues remain front-page news, with debate continuing to rage over issues including genetic modification, animal cloning, and 'designer babies'. With public opinion often driven by media speculation, how can we ensure that informed decisions regarding key bioethical issues are made in a reasoned, objective way? Bioethics: An Introduction for the Biosciences offers a balanced, objective introduction to the field of bioethics, ideal for any biosciences student who is new to the subject. With a focus on developing the students' power of reasoning and judgement, the book presents different perspectives to common themes in an impartial way, fostering debate and discussion. The opening section, 'The Ethical Groundwork', introduces students to the nature of bioethics and ethical theory. The book goes on to lead students through a broad range of bioethical issues relating to people, animals, and food, before concluding with an overview of bioethics in practice. The current generation of students will become the next generation of decision makers. Bioethics: An Introduction for the Biosciences is the perfect introduction to a field with which every biosciences student should be familiar. Online Resource Centre The Online Resource Centre features: For registered adopters of the book: - Figures from the book in electronic format, ready to download For students: - A web link library and hyperlinked reference list, giving ready access to additional information sources; - Topical updates: extensive summaries of the latest developments in those topics covered in the book, ensuring that the reader can remain up-to-date at all times

Producing and rearing children are immensely important human activities. Procreation and Parenthood offers new and original essays by leading philosophers on some of the main ethical issues raised by these activities. An Introduction supplies an accessible overview of the current debates. Individual chapters then take up particular problems such as: the morality of bringing people into existence; what limits there might be on a person's freedom to reproduce; whether human beings need to ensure that they only create the best possible children; whether there is a conflict between justice and parents' devotion of time and money to their own children; and, whether parents acquire their role because of their intention to do so or because they are responsible for bringing children into being.

Since the 1980s, MRI scanners have told us much about brain function and played an important role in the clinical diagnosis of a number of conditions - both in the brain and the rest of the body. Their routine use has made the diagnosis of brain tumours and brain damage both quicker and more accurate. However, some neuroscientific advances, in particular those that relate specifically to the mind have provoked excitement and discussion in a number of disciplines. One of the most thought provoking developments in recent neuroscience has been the progress made with 'mind-reading'. There seems nothing more private than one's thoughts, some of which we might choose to share with others, and some not. Yet, until now, little has been published on the particular issue of privacy in relation to 'brain' or 'mind' reading.
I know what you're thinking provides a fascinating, interdisciplinary account of the neuroscientific evidence on 'mind reading', as well as a thorough analysis of both legal and moral accounts of privacy. It brings together leading academics from the fields of psychology, neuroscience, philosophy, and law. The book considers such issues as the use of imaging to detect awareness in those considered to be in a vegetative state. It looks at issues of mental imaging and national security, the neurobiology of violence, and issues regarding diminished responsibility in criminals, and thus reduced punishment. It also considers how the use of neuroimaging can and should be regulated.
Providing a ground breaking exploration of how brain imaging technologies can throw light on our mental capacities, states, and acts, this is an important new book for psychologists, neuroscientists, bioethicists, philosophers, and lawyers.

Biopolitics and posthumanism have been passe theories in the academy for a while now, standing on the unfashionable side of the fault line between biology and liberal thought. These days, if people invoke them, they do so a bit apologetically. But, as Ruth Miller argues, we should not be so quick to relegate these terms to the scholarly dustbin. This is because they can help to explain an increasingly important (and contested) influence in modern democratic politicsthat of nostalgia. Nostalgia is another somewhat embarrassing concept for the academy. It is that wistful sense of longing for an imaginary and unitary past that leads to an impossible future. And, moreover for this book, it is ordinarily considered bad for democracy. But, again, Miller says, not so fast. As she argues in this book, nostalgia is the mode of engagement with the world that allows thought and life to coexist, productively, within democratic politics. Miller demonstrates her theory by looking at nostalgia as a nonhuman mode of thought, embedded in biopolitical reproduction. To put this another way, she looks at mass democracy as a classically nonhuman affair and nostalgic, nonhuman reproduction as the political activity that makes this democracy happen. To illustrate, Miller draws on the politics surrounding embryos and the modernization of the Turkish alphabet. Situating this argument in feminist theories of biopolitics, this unusual and erudite book demonstrates that nostalgia is not as detrimental to democratic engagement as scholars have claimed.

Recent advances in the brain sciences have dramatically improved our understanding of brain function. As we find out more and more about what makes us tick, we must stop and consider the ethical implications of this new found knowledge. Will having a new biology of the brain through imaging make us less responsible for our behavior and lose our free will? Should certain brain scan studies be disallowed on the basis of moral grounds? Why is the media so interested in reporting results of brain imaging studies? What ethical lessons from the past can best inform the future of brain imaging?
These compelling questions and many more are tackled by a distinguished group of contributors to this, the first-ever volume on neuroethics. The wide range of disciplinary backgrounds that the authors represent, from neuroscience, bioethics and philosophy, to law, social and health care policy, education, religion and film, allow for profoundly insightful and provocative answers to these questions, and open up the door to a host of new ones. The contributions highlight the timeliness of modern neuroethics today, and assure the longevity and importance of neuroethics for generations to come.

This book is the first broad history of the growing field of bioethics. Covering the period 1947-1987, it examines the origin and evolution of the debates over human experimentation, genetic engineering, organ transplantation, termination of life-sustaining treatment, and new reproductive technologies. It assesses the contributions of philosophy, theology, law and the social sciences to the expanding discourse of bioethics. Written by one of the field's founders, it is based on extensive archival research into resources that are difficult to obtain and on interviews with many leading figures. A very readable account of the development of bioethics, the book stresses the history of ideas but does not neglect the social and cultural context and the people involved.

Written primarily for mid-to-upper level undergraduates, this primer will introduce students to topics at the forefront of the subject that are being applied to probe biological problems, or to address the most pressing issues facing society. These topics will include those that form the cornerstone of contemporary research, helping students to make the transition to active researcher. This primer introduces the challenges and opportunities of applying synthetic biological techniques to mammalian cells, tissues, and organisms. It covers the special features that make engineering mammalian systems different from engineering bacteria, fungi, and plants, and provides an overview of current techniques. A variety of cutting-edge examples illustrate the different purposes of mammalian synthetic biology, including pure biomedical research, drug production, tissue engineering, and regenerative medicine.

Issues concerning patients' rights are at the center of bioethics, but the political basis for these rights has rarely been examined. In "Bioethics in a Liberal Society: The Political Framework of Bioethics Decision Making," Thomas May offers a compelling analysis of how the political context of liberal constitutional democracy shapes the rights and obligations of both patients and health care professionals. May focuses on how a key feature of liberal society--namely, an individual's right to make independent decisions--has an impact on the most important relational facets of health care, such as patients' autonomy and professionals' rights of conscience.

Although a liberal political framework protects individual judgments, May asserts that this right is based on the assumption of an individual's competency to make sound decisions. May uses case studies to examine society's approach to medical decision making when, for reasons ranging from age to severe mental disorder, a person lacks sufficient competency to make independent and fully informed choices. To protect the autonomy of these vulnerable patients, May emphasizes the need for health care ethics committees and ethics consultants to help guide the decision-making process in clinical settings. "Bioethics in a Liberal Society" is essential reading for all those interested in understanding how bioethics is practiced within our society.

Rated as one of the top 15 breakthroughs in medicine over the last 150 years, evidence-based medicine (EBM) has become highly influential in medicine. Put simply, EBM promotes a seemingly irrefutable, principle: that decision-making in medical practice should be based, as much as possible, on the most up-to-date research findings. EBM has been particularly popular within psychiatry, a field that is haunted by a legacy of controversial interventions. For advocates, anchoring psychiatric practice in research data makes psychiatry more scientific valid and ethically legitimate. Few, however, have questioned whether EBM, a concept pioneered by those working in other areas of medicine, can be applied to psychiatric disorders. In this groundbreaking book, the Canadian psychiatrist and ethicist Mona Gupta analyzes the basic assumptions of EBM, and critically examines their applicability to psychiatry. By highlighting the basic ethical tensions between psychiatry and EBM, the author addresses the fundamental and controversial question - should psychiatrists practice evidence-based medicine at all?

Unfit for the Future argues that the future of our species depends on our urgently finding ways to bring about radical enhancement of the moral aspects of our own human nature. We have rewritten our own moral agenda by the drastic changes we have made to the conditions of life on earth. Advances in technology enable us to exercise an influence that extends all over the world and far into the future. But our moral psychology lags behind and leaves us ill equipped to deal with the challenges we now face. We need to change human moral motivation so that we pay more heed not merely to the global community, but to the interests of future generations. It is unlikely that traditional methods such as moral education or social reform alone can bring this about swiftly enough to avert looming disaster, which would undermine the conditions for worthwhile life on earth forever. Persson and Savulescu maintain that it is likely that we need to explore the use of new technologies of biomedicine to change the bases of human moral motivation. They argue that there are in principle no philosophical or moral objections to such moral bioenhancement. Unfit for the Future challenges us to rethink our attitudes to our own human nature, before it is too late.

Profoundly important ethical and political controversies turn on the question of whether biological life is an essential aspect of a human person, or only an extrinsic instrument. Lee and George argue that human beings are physical, animal organisms - albeit essentially rational and free - and examine the implications of this understanding of human beings for some of the most controversial issues in contemporary ethics and politics. The authors argue that human beings are animal organisms and that their personal identity across time consists in the persistence of the animal organisms they are; they also argue that human beings are essentially rational and free and that there is a radical difference between human beings and other animals; criticize hedonism and hedonistic drug-taking; present detailed defenses of the prolife positions on abortion and euthanasia; and defend the traditional moral position on marriage and sexual acts.

In a world where incredible medical technologies are possible ... does "can do" mean "should do"? Why the Church Needs Bioethics helps you understand and constructively engage bioethical challenges with the resources of Christian wisdom and ministry. Three rich and true-to-life case studies illustrate the urgency of such bioethical issues as reproductive and genetic technologies, abortion, forgoing treatment, assisted suicide, stem cell research, and human enhancement technologies. Leading Christian voices bring biblical and theological perspective to bear on the incredible medical technologies available today; mobilize useful insights from health care, law, and business; and demonstrate the powerful ways the church can make a difference through counseling, pastoral care, intercultural ministry, preaching, and education. This book equips students, church and lay leaders, and people in health-related fields with the knowledge to make faithful bioethical decisions and to help foster a world where human beings are shown respect as people created in the image of God. Contributors to Why the Church Needs Bioethics include leading Bible and theology scholars, such as D. A. Carson and Kevin Vanhoozer; leaders in the areas of preaching (Greg Scharf) and ethics (Scott Rae); and 15 other experts in the fields of biblical-theological studies, ministry, communication, business, law, healthcare, and bioethics.

Patient autonomy is a much discussed and debated subject in medical ethics, as well as in healthcare practice, medical law, and healthcare policy. This book provides a detailed and nuanced analysis of both the concept of autonomy and the principle of respect for autonomy, in an accessible style. The unique feature of this book is that it combines empirical research into hospital practice with thorough philosophical analyses. As such, it is an example of a new movement in applied ethics, that of 'empirical ethics'.

The key themes are informed consent and medical decision making, personal well-being, competence, paternalism and decision making for incompetent patients. Much attention is also devoted to autonomy in non-decision making situations - patient control over small everyday aspects of care, authenticity and existential aspects of illness, autonomy and the 'ethics of care', and the relationship between autonomy and trust in the physician-patient relationship.

This book will be of interest to those working or studying in the field of medical ethics and applied ethics but also to healthcare professionals and health policy makers.