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The National Bioethics Advisory Commission (NBAC) was established in 1995 to advise various government entities on issues arising from research on human biology and behavior. During its five-year tenure, NBAC submitted six reports to the White House containing 120 recommendations on several complex bioethical issues including the cloning of human beings and embryonic stem cell research. This study assesses NBAC's contribution to policymaking by tracking the response to NBAC's recommendations from the president, Congress, government, societies and foundations, other countries, and international groups.
Professionals in need of such training and bioethicists will be interested.
In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular.
Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.
This book collects the most influential essays and articles by renowned ethicist James F. Childress, along with several new pieces. It focuses on 'public bioethics' - bioethics as they relate to the shaping of public policy and public culture. The book is divided into four sections, which address issues of autonomy and paternalism, the role of religious convictions and conscientious refusals in health care, ethical practices in organ transplantation, and the general terrain of public health ethics.
What steps can be taken to incorporate a cultural perspective to the evaluation of research risks and benefits? How can investigators develop and implement respectful informed consent procedures in diverse cultural and language communities? What are ethical pitfalls and successful approaches to engaging in community and participant consultation? The Handbook of Ethical Research With Ethnocultural Populations and Communities, edited by Joseph E. Trimble and Celia B. Fisher, addresses these and other key questions in the first major work to focus specifically on ethical issues involving work with ethnocultural populations. Filling gaps and questions left unanswered by general rules of scientific conduct such as those embodied in federal regulations and professional codes, this Handbook will help guide ethical decision making for social and behavioral science research with multicultural groups for years to come. Key Features: Brings together for the first time a multidisciplinary blend of national leaders who specialize in the area of conducting research with ethnocultural populations Addresses existing issues at methodological, procedural, and conceptual levels for the responsible conduct of research in the field Incorporates as background a summary of leading research and scholarship on various topics framed within the authors′ personal successes, challenges, and failures in the dynamic process of creating a multicultural research ethic Includes real-world case examples to illustrate significant ethical principles in the research venture more concretely The Handbook is designed for graduate and advanced undergraduate students in Psychology and will also be valuable for social and medical science researchers and institutional review boards. This book will also be of interest to ethicists and bioethicists, policy makers, and foundations that fund research involving multicultural populations. .
Discusses the ethical issues involved in the use of human embryonic stem cells in regenerative medicine.
Collaborations of physicians and researchers with industry can provide valuable benefits to society, particularly in the translation of basic scientific discoveries to new therapies and products. Recent reports and news stories have, however, documented disturbing examples of relationships and practices that put at risk the integrity of medical research, the objectivity of professional education, the quality of patient care, the soundness of clinical practice guidelines, and the public's trust in medicine. Conflict of Interest in Medical Research, Education, and Practice provides a comprehensive look at conflict of interest in medicine. It offers principles to inform the design of policies to identify, limit, and manage conflicts of interest without damaging constructive collaboration with industry. It calls for both short-term actions and long-term commitments by institutions and individuals, including leaders of academic medical centers, professional societies, patient advocacy groups, government agencies, and drug, device, and pharmaceutical companies. Failure of the medical community to take convincing action on conflicts of interest invites additional legislative or regulatory measures that may be overly broad or unduly burdensome. Conflict of Interest in Medical Research, Education, and Practice makes several recommendations for strengthening conflict of interest policies and curbing relationships that create risks with little benefit. The book will serve as an invaluable resource for individuals and organizations committed to high ethical standards in all realms of medicine.