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This chapter outlines the framework and goals of this cross-national study of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) policy. It also describes the key features of ALS/MND and discusses criteria and associated challenges in making the diagnosis and the importance of excluding ALS/MND mimics. Epidemiology, genetics and possible environmental risk factors for ALS/MND are reviewed. Management of symptoms, challenges confronting caregivers, including access to palliative care and hospice during the end-of-life, and the broad range of ethical issues surrounding ALS/MND care are highlighted. This chapter examines the often-ignored public policy context and the importance of cultural and religious factors in understanding policy differences which exist across countries. Finally, this chapter introduces the countries selected for this study and summarizes the key topics of importance the authors were asked to address in their chapters.

This chapter summarizes the wealth of information related to ALS/MND policy as presented in the preceding chapters written by experts from twenty-one diverse countries. An overview of findings related to ALS/MND policy issues is described and discussed. Major disparities between high- and low- and middle-income countries are noted, including differences within each wealth category regarding the activity and support of government and private organizations. Disparities are observed with research funding, diagnosis and care of patients, access to assistive technologies and palliative care, the availability of multidisciplinary care, support for caregivers and decision making at the end of life. This chapter also stresses the importance of cultural and societal differences in understanding policy variation across countries while recognizing the need to take these into account when framing and implementing policy in any country.

The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

This chapter outlines the policy making process and the policy context of Alzheimer’s disease (AD) and summarizes the broad range of issues surrounding it. It examines why AD promises to be a policy challenge well into the future as its prevalence and economic costs escalate. It details the economic and social costs of AD and illustrates how they threaten to bankrupt health care systems unless we develop adequate anticipatory policies to deal with the issues they raise. The chapter also examines the research funding for AD compared to other diseases and summarizes recent policy initiatives and commission and association reports to deal with the challenges it raises.

T hirty years ago there were at most only a handful of political scientists who were interested in or publishing about policy issues in the life sciences, concentrated primarily in the health or environmental policy areas. As a result, political science was notably absent as a discipline either in the literature, at conferences, or as members of state or national commissions, advisory bodies, or institutional review boards involving the life sciences. Although most of the early activity in biopolitics understandably was focused on the evolutionary and behavioral aspects, from the beginning Thomas Wiegele and others believed it was vital to ensure that biopolitics coverage was inclusive and that the policy dimension be a critical component. For that reason, when building the graduate program in biopolitics at Northern Illinois University, Wiegele’s first faculty hire was a policy person. This is also why one of the two articles in the premier issue of the journal was ‘‘Biopolicy: A Restatement of Its Role in Politics and the Life Sciences.’’ In that article, I argued that scholars in all areas of politics and the life sciences had significant contributions to make to biopolicy because they possessed an awareness and appreciation of biological fact and a grasp of the relevant biological issues. Until that time, the enunciation and shaping of issues in the life sciences had come from biological scientists themselves and from the then-emerging bioethics movement. I outlined a range of biopolicy issues at the individual, societal and global levels (see Table 1) and stated that these areas represented but the surface of an extensive array of biopolicy concerns that should be of interest to scholars in biopolitics. In each case, the political ramifications were widespread and complicated and I asserted that a biopolitical perspective would be helpful. I contended then that if we as political scientists were to transcend disciplinary boundaries, it was imperative that our discipline be able to offer life scientists, policy makers, and the interested broader public tangible guidance regarding the policy ramifications of the rapid advances across the life sciences. I also argued that political scientists had a useful perspective as well as substantive knowledge about the political process to offer those in the life sciences. More importantly, fundamental policy questions needed to be addressed on the basis of the unfolding knowledge of the evolutionary foundations of political systems and political behavior, such as whether the current political institutions were capable of dealing with new issues produced by biology. To that end, I argued that we must make clear the policy implications of knowledge gained through biobehavioral research, including a need for expanded time frames for public policy and for more comprehensive, anticipatory assessment of a policy on future generations. Thus, we needed to influence the very framework of policy decision making by infusing biobehavioral knowledge into research on the policy process itself. For good examples of potentially valuable contributions to this new policy framework, see Corning on synergism, Somit and Peterson on democracy, Caldwell on biocracy, and Masters, Flohr, and Losco on bureaucracy, just to cite a few. In summary, I argued for the need for a systematic effort to coordinate and integrate the then-divergent areas of biopolicy research if we were to have any input doi: 10.2990/30_1_52

Typologies have been central to the comparative turn in public policy and this paper contributes to the debate by assessing the capacity of typologies of health systems to capture the institutional context of health care and to contribute to explaining health policies across countries. Using a recent comparative study of health policy and focusing on the concept of the health care state the paper suggests three things. First, the concept of the health care state holds as a set of ideal types. Second, as such the concept of the health care state provides a useful springboard for analyzing health policy, but one which needs to be complemented by more specific institutional explanations. Third, the concept of the health care state is less applicable to increasingly important, non-medical areas of health policy. Instead, different aspects of institutional context come into play and they can be combined as part of a looser ‘‘organizing framework’’.

Investigational, conceptual, and interventional advances in the neurosciences strain consensus in research ethics, clinical ethics, legal ethics, and jurisprudence and demand innovative adaptation in public policy. I review these advances, ask how they might change a range of policies, and conclude that their implications — particularly relating to aggression — are likely to have been underestimated.

This paper analyses the policy issues surrounding the definition of death within the context of technological and social changes. Increasingly precise brain imaging techniques, combined with demographic trends and heightened health budget pressures, are bound to accentuate calls for redefining death in terms of partial- or higher-brain criteria. In addition to questioning our notions of consciousness and of what human life entails, a shift toward higher-brain definitions of death have critical public policy implications, which must be thoroughly debated. Adding patients in a persistent vegetative state or with end stage Alzheimer's disease to the ranks of the dead raises many difficult questions, for instance, must the NHS or insurers fund continuing care for a legally dead but still breathing patient whose family cannot let go? The implications for disposal of breathing patients who lack brain functions deemed essential to life are substantial. The public is likely to find it difficult to accept burial o...

Purpose – This chapter provides an overview of the policy implications of neuroscience and argues that research initiatives, individual use, and aggregate social consequences of unfolding knowledge about the brain and the accompanying applications require particularly close scrutiny because of the centrality of the brain to human behavior and thoughts. Design/methodology/approach – The chapter summarizes the technological context of interventions in the brain and discusses their policy implications. It then examines research findings, principally from neuroimaging studies, that relate to decision making and emotions and looks at their potential impact on frameworks of political decision making. Findings – Research on brain structure and functioning raises difficult policy issues and necessitates a reevaluation of our assumptions concerning the policy process, itself. Practical implications – Given the inevitability of expanded strategies for exploration and therapy of the brain and the concerns they raise, it is important that these issues surrounding their application be clarified and debated before such techniques fall into routine use. Originality/value – The chapter provides original analysis of the policy ramifications of interventions in the brain and neuroscience in general and makes some observations about the brain and society.

THE PURPOSE OF THIS short note is to update readers on recent developments in, and political implications of, genetic engineering, a critical tool in the expanding field of biotechnology. Based on new understanding of the mechanisms of DNA, molecular biologists are now able to chemically cut genes or sets of genes from one organism and splice them into the DNA of another. This is called recombinant DNA (rDNA) technology. Although these techniques were first applied to bacteria and yeasts, in the last decade researchers have made remarkable strides in putting foreign genes into more complex plants and animals.

An alternative approach to that which emphasizes maternal responsibility is to focus on the social responsibility to provide all pregnant women with access to proper nutrition, counseling, mental health and substance abuse services, and adequate general health care. The problem is heightened by the fact that proponents both of women’s rights and fetal rights often try to optimize their position by insisting that the rights they advocate must be absolute. The courts have played and will continue to play a central role in redefining the maternal-fetal relationship. Advances in medical technology and in knowledge of fetal development are rapidly altering this situation. In addition to increasing social recognition of and empathy for the fetus, innovative diagnostic and therapeutic technologies make prenatal injury cases increasingly similar to more conventional liability or injury torts. In contrast, quadrant IV recognizes a claim to fetal rights and the legitimacy of constraining maternal behavior by limiting the scope of her rights.

Despite the Supreme Court ruling in theJohnson Controlscase that fetal protection policies that exclude women from workplaces deemed hazardous to the fetus are in clear violation of the 1978 Pregnancy Discrimination Amendment, the issue of fetal health remains on the policy agenda. This article summarizes the rationale behind fetal protection policies and the current scientific evidence over workplace hazards. It also discusses the disparate court response to these policies beforeJohnson Controlsand the confusing regulatory framework. Finally, it makes a case for including consideration of the paternal contribution to fetal injury in the workplace and calls for a balanced approach to accommodate both women's rights to employment and society's interest in healthy children.

Science-based biotechnology is now introducing fundamental changes in the status of life on earth which have major implications for human society, yet the social sciences are largely failing to address these changes. Biotechnology offers immense opportunities for advancing the quality of human life, holding promise for overcoming numerous and heretofore intractable causes of suffering and impoverishment. Moreover, it may enable mankind to enjoy the benefits of science without degradation of the biosphere. But to obtain these advantages biotechnology must be guided by wise and timely public policies. Even the most beneficent innovation may create problems that, unless anticipated and prevented, may offset or cancel out social gains.

There is nothing unique in a call for increased attention to the policy dimensions of biological developments. Almost two decades ago, Caldwell (1964:2) urged a “policy synthesis of scientific knowledge and ethical values” in response to the public policy questions raised 1JY the “explosion of biomedical knowledge and technology.” Despite similar exhortations intermittently since that time, Somit and Peterson (1979) conclude that political scientists have yet to give adequate attention to the public policy implications of biological issues. Wiegele, too, (1979: 151) sees the need for “some students of biopolitics to become interested in the political policy relevance of certain aspects of the life sciences” but sees only a few scholars interested in pursuing such an endeavor at this time.

As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relating to the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a matter of public health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at this time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind.Policy issues associated with different forms of genetic screening--prenatal diagnosis, phenylketonuria screening in newborns, and carrier screening programs--are examined. Criteria are suggested for cost-benefit analyses of proposed programs, and data from available studies on some genetic defects are provided. The author sees little public health justification at this time for mandatory screening; he argues against any compulsory screening programs except where the disease is easily identified and treatable. Moreover, mandatory programs should never be considered unless voluntary trial programs have proved to be socially and technically feasible.

Rapid advances in biomedicine, accompanied by changing social values, are thrusting bioethical decision making into the political spectrum. This article examines the forces which are politicizing bioethical decisions and demonstrates the challenges they raise. It also presents an overview of the current political context and concludes that American political institutions and processes are not well-suited for dealing with these intense, sensitive bioethical issues. Although the article reflects skepticism concerning the ability of the political system to fulfill the expansive demands confronting it, it ends by suggesting several potential adaptations which should make the process more responsive and the institution's actions more effectual.

This article attempts to encourage discussion and analysis of the policy implications of biomedical technology and proposes a framework for studying life and death issues arising out of this technology. It summarizes the status of research on a wide variety of specific policy areas, including those in human genetic inter-vention as well as the non-genetic biomedical issues at various life stages. It suggests that no set of issues has more serious implications for humanity and urges policy scientists to examine these technologies more fully. While the technical and ethical aspects of these issues are important, at the center of these con-cerns is the extent to which decision should be public–the degree to which the government should direct, limit, or facilitate applica-tion of the various technologies that affect life and death. This overview article concludes with a call for a PSJ symposium on this area of critical policy importance.

Biomedical choices are emerging as critical policy issues of the 1980s. Political pressures for cost containment, trends toward corporate medicine, and continuing problems of access and equity ensure biomedical issues a prominent place on the policy agenda. Students of political science should be familiar with the array of biomedical technologies that currently are challenging the tenets of medicine as well as the capacity of political institutions to resolve the resulting policy dilemmas. Based on this, a course in biomedical policy is overdue. This article outlines a course which is designed to clarify the public policy dimensions of biomedicine and develop analytical skills in the students so that they can better cope with these issues of public and personal importance. It describes some of the approaches and methods that I have found useful and summarizes a few of the problems one might expect to encounter in teaching biomedical policy.