Research with human subjects has long been controversial because of the conflicts that often arise between promoting scientific knowledge and protecting the rights and welfare of subjects. Twenty-five years ago the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research addressed these conflicts. The result was the Belmont Report: Ethical Principles and Guidance for Research Involving Human Subjects, a report that identified foundational principles for ethical research with human subjects: respect for persons, beneficence, and justice.
Since the publication of Belmont, these three principles have greatly influenced discussions of research with human subjects. While they are often regarded as the single-most influential set of guidelines for biomedical research and practice in the United States (and other parts of the world), not everyone agrees that they provide adequate guidance. Belmont Revisited brings together a stellar group of scholars in bioethics to revisit the findings of that original report. Their responses constitute a broad overview of the development of the Belmont Report and the extent of its influence, especially on governmental commissions, as well as an assessment of its virtues and shortcomings.
Belmont Revisited looks back to reexamine the creation and influence of the Belmont Report, and also looks forward to the future of research—with a strong call to rethink how institutions and investigators can conduct research more ethically.
In Spirituality and Health Research: Methods, Measurement, Statistics, and Resources, Dr. Harold G. Koenig leads a comprehensive overview of this complex subject. Dr. Koenig is one of the world’s leading authorities on the relationship between spirituality and health, and a leading researcher on the topic. As such, he is distinctively qualified to author such a book.
With Inclusion, Steven Epstein argues that strategies to achieve diversity in medical research mask deeper problems, ones that might require a different approach and different solutions.
Formal concern with this issue, Epstein shows, is a fairly recent phenomenon. Until the mid-1980s, scientists often studied groups of white, middle-aged men—and assumed that conclusions drawn from studying them would apply to the rest of the population. But struggles involving advocacy groups, experts, and Congress led to reforms that forced researchers to diversify the population from which they drew for clinical research. While the prominence of these inclusive practices has offered hope to traditionally underserved groups, Epstein argues that it has drawn attention away from the tremendous inequalities in health that are rooted not in biology but in society.
“Epstein’s use of theory to demonstrate how public policies in the health profession are shaped makes this book relevant for many academic disciplines. . . . Highly recommended.”—Choice
“A masterful comprehensive overview of a wide terrain.”—Troy Duster, Biosocieties
In 1927 the first bill to secure government support in the search for a cure for cancer was introduced to Congress. In 1971 Congress passed the Conquest of Cancer Act, which initiated a new and enlarged effort in the fight against cancer, including possible annual expenditures of up to one billion dollars. The forty-four years between these two dates have witnessed the evolution of medical research from a limited, private endeavor to a major national enterprise commanding substantial support from the federal government.
In this first historical analysis of national policy in biomedical research, Stephen Strickland examines the rise of the National Institutes for Health, tells of the recurrent struggle between elected public officials and science administrators over the pace and direction of cancer and heart disease research; analyzes the roles that key members of Congress have played in the development of medical research; and discusses the medical research lobby and its founder, Mrs. Albert D. Lasker. What emerges is a clear picture of how government officials actually formulate national policy, not only in medical research but in other areas as well.
Robotic exoskeletons that allow stroke survivors to regain use of their limbs, 3D-printed replacement body parts, and dozens of other innovations still in schematic design are revolutionizing the treatment of debilitating injuries and nervous system disorders. What all these technologies have in common is that they are modeled after engineering strategies found in nature—strategies developed by a vast array of organisms over eons of evolutionary trial and error.
Eugene Goldfield lays out many principles of engineering found in the natural world, with a focus on how evolutionary and developmental adaptations, such as sensory organs and spinal cords, function within complex organisms. He shows how the component parts of highly coordinated structures organize themselves into autonomous functional systems. For example, when people walk, spinal cord neurons generate coordinated signals that continuously reorganize patterns of muscle activations during the gait cycle. This self-organizing capacity is just one of many qualities that allow biological systems to be robust, adaptive, anticipatory, and self-repairing. To exploit the full potential of technologies designed to interact seamlessly with human bodies, properties like these must be better understood and harnessed at every level, from molecules to cells to organ systems.
Bioinspired Devices brings together insights from a wide range of fields. A member of the Wyss Institute for Biologically Inspired Engineering, Goldfield offers an insider’s view of cutting-edge research, and envisions a future in which synthetic and biological devices share energy sources and control, blurring the boundary between nature and medicine.
Big data, genomics, and quantitative approaches to network-based analysis are combining to advance the frontiers of medicine as never before. Network Medicine introduces this rapidly evolving field of medical research, which promises to revolutionize the diagnosis and treatment of human diseases. With contributions from leading experts that highlight the necessity of a team-based approach in network medicine, this definitive volume provides readers with a state-of-the-art synthesis of the progress being made and the challenges that remain.
Medical researchers have long sought to identify single molecular defects that cause diseases, with the goal of developing silver-bullet therapies to treat them. But this paradigm overlooks the inherent complexity of human diseases and has often led to treatments that are inadequate or fraught with adverse side effects. Rather than trying to force disease pathogenesis into a reductionist model, network medicine embraces the complexity of multiple influences on disease and relies on many different types of networks: from the cellular-molecular level of protein-protein interactions to correlational studies of gene expression in biological samples. The authors offer a systematic approach to understanding complex diseases while explaining network medicine’s unique features, including the application of modern genomics technologies, biostatistics and bioinformatics, and dynamic systems analysis of complex molecular networks in an integrative context.
By developing techniques and technologies that comprehensively assess genetic variation, cellular metabolism, and protein function, network medicine is opening up new vistas for uncovering causes and identifying cures of disease.
In this concise, straightforward analysis, Jost challenges the historical and theoretical assumptions on which the consumer-driven health care movement is based and reexamines the empirical evidence that it claims as support. He traces the histories of both private health insurance in the United States and the CDHC movement. The idea animating the drive for consumer-driven health care is that the fundamental problem with the American health care system is what economists call “moral hazard,” the risk that consumers overuse services for which they do not bear the cost. Jost reveals moral hazard as an inadequate explanation of the complex problems plaguing the American health care system, and he points to troubling legal and ethical issues raised by CDHC. He describes how other countries have achieved universal access to high-quality health care at lower cost, without relying extensively on cost sharing, and he concludes with a proposal for how the United States might do the same, incorporating aspects of CDHC while recognizing its limitations.
A provocative call to rethink America's values in health care.
To Live and Die in America details how the United States has among the worst indicators of health in the industrialised world and at the same time spends significantly more on its health care system than any other industrial nation.
Robert Chernomas and Ian Hudson explain this contradictory phenomenon as the product of the unique brand of capitalism that has developed in the US. It is this particular form of capitalism that created both the social and economic conditions that largely influence health outcomes and the inefficient, unpopular and inaccessible health care system that is incapable of dealing with them.
The authors argue that improving health in America requires a change in the conditions in which people live and work as well as a restructured health care system.
“I’m covered—why should I foot the bill for somebody who isn’t?”
This question, unspoken but simmering at the center of the debate over universal health care coverage, comes in for a thoughtful hearing—and, perhaps, gentle corrective—in Larry Churchill’s timely book. Churchill, whose Rationing Health Care in America put the nation’s health care crisis into perspective, here does the same for our crisis of conscience over health care coverage. As Clinton and Congress spar over the financing and organization of a national health system, the true debate, this book reveals, is about moral and political values, about the meaning and ethics of health care reform.
Churchill begins by cutting through the confused discussion about rationing health care. Concerns about rationing, with all the moral and political questions they raise, deflect our attention from a more important issue, which this book brings into focus. Arguing that care is already rationed by ability to pay, Churchill suggests that the proper question is not whether to ration but how to do so fairly, and that answering requires a clear sense of the aims of a health care system. In pursuit of this necessary understanding, Churchill explores values and concepts such as security and solidarity, self-interest and social affinity, rights and responsibilities. Drawing on philosophical ideas of justice and individual responsibility, rendered here with remarkable clarity, he shows that universal care is morally as well as economically comprehensible and that a truly inclusive health care system should be seen as a common civic purpose rather than as a supply of services to be consumed. Accessible, deeply felt, and cogently argued, this book should revise the terms of the national debate over health care reform.
Flatlined lifts the veil of secrecy on twenty-first century health care and delves into the realities of good people caught in a bad medical system. Dr. Guy L. Clifton, a practitioner as well as a policy advocate, reveals first-hand accounts of needless tragedy, such as the young man who died after a car wreck for lack of a bed in a qualified hospital and the surgeon who was dejected by the scarcity of resources needed to enable him to perform heart surgery on an uninsured man.
Arguing that a lack of coordinated care and quality medical practice benchmarks result in high levels of redundancy and ineffectiveness, Clifton proposes that the key to reducing health care costs, improving quality, and financially protecting the uninsured, is to reduce wastefulness, and offers a solution for achieving success.
Flatlined sounds the warning call: By 2018 Medicare and Medicaid will consume about one-third of the federal budget. American businesses now pay three times as much of their payroll for health care as global competitors, expected to worsen as health care grows at twice the rate of the U.S. economy. Based on his years of experience in policy and medicine, Clifton offers an attainable solution through the development of an American Medical Quality System.
Chronic Condition provides a compelling analysis of the causes of the current health care crisis and of the shortcomings of reform proposals. It also offers an ingenious new framework for reform that, while minimizing government interference, would provide a means for financing care for the less affluent.
Sherry Glied shows that rising health care spending is consistent with a rising standard of living. Since we can, as a nation, afford more health care, reform must address not the overall level of health care costs but the distribution of health care spending.
Prior reform proposals, Glied argues, have failed to account for the tension between the clearly manifested desire for improving the quality of health care and the equally widespread interest in assuring that the less fortunate share in these improvements. After careful analysis of the ill-fated Clinton plan, Glied proposes a new solution that would make the willingness to pay for innovation the means of financing health care improvements for the less affluent. While rejecting the idea that the distribution of health care should be perfectly equal, Glied's proposal would enable all Americans to benefit from the dynamics of the free market.
Universal health care was on the national political agenda for nearly a hundred years until a comprehensive (but not universal) health care reform bill supported by President Obama passed in 2010. The most common explanation for the failure of past reform efforts is that special interests were continually able to block reform by lobbying lawmakers. Yet, beginning in the 1970s, accelerating with the failure of the Clinton health care plan, and continuing through the passage of the Affordable Care Act in 2010, health policy reform was alive and well at the state level.
Interest Groups and Health Care Reform across the United States assesses the impact of interest groups to determine if collectively they are capable of shaping policy in their own interests or whether they influence policy only at the margins. What can this tell us about the true power of interest groups in this policy arena? The fact that state governments took action in health policy in spite of opposing interests, where the national government could not, offers a compelling puzzle that will be of special interest to scholars and students of public policy, health policy, and state politics.
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