Download or read book The Principle of Respect for Human Vulnerability and Personal Integrity Report of the International Bioethics Committee of UNESCO IBC written by and published by UNESCO. This book was released on with total page 47 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Bioethics Committees and Public Engagement written by UNESCO and published by UNESCO Publishing. This book was released on 2019-12-31 with total page 53 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Human Genome Editing written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-08-13 with total page 329 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book The National Children s Study Research Plan written by National Research Council and published by National Academies Press. This book was released on 2008-08-16 with total page 166 pages. Available in PDF, EPUB and Kindle. Book excerpt: The National Children's Study (NCS) is planned to be the largest long-term study of environmental and genetic effects on children's health ever conducted in the United States. It proposes to examine the effects of environmental influences on the health and development of approximately 100,000 children across the United States, following them from before birth until age 21. By archiving all of the data collected, the NCS is intended to provide a valuable resource for analyses conducted many years into the future. This book evaluates the research plan for the NCS, by assessing the scientific rigor of the study and the extent to which it is being carried out with methods, measures, and collection of data and specimens to maximize the scientific yield of the study. The book concludes that if the NCS is conducted as proposed, the database derived from the study should be valuable for investigating hypotheses described in the research plan as well as additional hypotheses that will evolve. Nevertheless, there are important weaknesses and shortcomings in the research plan that diminish the study's expected value below what it might be.
Download or read book The Ethics and Politics of Community Engagement in Global Health Research written by Lindsey Reynolds and published by Routledge. This book was released on 2020-06-09 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt: Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.
Download or read book Society s Choices written by Institute of Medicine and published by National Academies Press. This book was released on 1995-03-27 with total page 560 pages. Available in PDF, EPUB and Kindle. Book excerpt: Breakthroughs in biomedicine often lead to new life-giving treatments but may also raise troubling, even life-and-death, quandaries. Society's Choices discusses ways for people to handle today's bioethics issues in the context of America's unique history and cultureâ€"and from the perspectives of various interest groups. The book explores how Americans have grappled with specific aspects of bioethics through commission deliberations, programs by organizations, and other mechanisms and identifies criteria for evaluating the outcomes of these efforts. The committee offers recommendations on the role of government and professional societies, the function of commissions and institutional review boards, and bioethics in health professional education and research. The volume includes a series of 12 superb background papers on public moral discourse, mechanisms for handling social and ethical dilemmas, and other specific areas of controversy by well-known experts Ronald Bayer, Martin Benjamin, Dan W. Brock, Baruch A. Brody, H. Alta Charo, Lawrence Gostin, Bradford H. Gray, Kathi E. Hanna, Elizabeth Heitman, Thomas Nagel, Steven Shapin, and Charles M. Swezey.
Download or read book Setting Priorities in Health Care written by M. Malek and published by . This book was released on 1994-09-06 with total page 360 pages. Available in PDF, EPUB and Kindle. Book excerpt: The dual problems of securing access to health care and containing the increasing costs of health care delivery bring the issue of prioritization to the forefront of health care debates. This study discusses the implications and consequences of allocating priorities to certain groups.
Download or read book Negotiating Bioethics written by Adèle Langlois and published by Routledge. This book was released on 2013-08-15 with total page 212 pages. Available in PDF, EPUB and Kindle. Book excerpt: The sequencing of the entire human genome has opened up unprecedented possibilities for healthcare, but also ethical and social dilemmas about how these can be achieved, particularly in developing countries. UNESCO’s Bioethics Programme was established to address such issues in 1993. Since then, it has adopted three declarations on human genetics and bioethics (1997, 2003 and 2005), set up numerous training programmes around the world and debated the need for an international convention on human reproductive cloning. Negotiating Bioethics presents Langlois' research on the negotiation and implementation of the three declarations and the human cloning debate, based on fieldwork carried out in Kenya, South Africa, France and the UK, among policy-makers, geneticists, ethicists, civil society representatives and industry professionals. The book examines whether the UNESCO Bioethics Programme is an effective forum for (a) decision-making on bioethics issues and (b) ensuring ethical practice. Considering two different aspects of the UNESCO Bioethics Programme – deliberation and implementation – at international and national levels, Langlois explores: how relations between developed and developing countries can be made more equal who should be involved in global level decision-making and how this should proceed how overlap between initiatives can be avoided what can be done to improve the implementation of international norms by sovereign states how far universal norms can be contextualized what impact the efficacy of national level governance has at international level Drawing on extensive empirical research, Negotiating Bioethics presents a truly global perspective on bioethics. The book will be of interest to students and scholars of sociology, politics, science and technology studies, bioethics, anthropology, international relations, and public health. A PDF version of this book is available for free in Open Access at www.tandfebooks.com. It has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 3.0 license.
Download or read book Bioethics in Singapore written by John Elliott and published by World Scientific. This book was released on 2010 with total page 343 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides an analysis of the ways in which the BAC has established an ethical framework for biomedical research in Singapore, following the launch of the Biomedical Sciences Initiative by the Singapore Government. The editors and authors have an intimate knowledge of the working of the BAC, and the focus of the book includes the ways in which international forces have influenced the form and substance of bioethics in Singapore. Together, the authors offer a comparative account of the institutionalisation of biomedical research ethics in Singapore, considered in the wider context of international regulatory efforts. The book reviews the work of the BAC by placing it within the broader cultural, social and political discourses that have emerged in relation to the life sciences since the turn of the 21st century. This book is not primarily intended to be a retrospect or an appraisal of the contribution of the BAC, though this is one aspect of it. Rather, the main intention is to make a substantive contribution to the rapidly emerging field of bioethics. Ethical discussions in the book include consideration of stem cell research and cloning, genetics and research with human participants, and focus on likely future developments as well as the past.Many of the contributors of the book have been personally involved in this work, and hence they write with an authoritative first-hand knowledge that scholars in bioethics and public policy may appreciate. As indicated above, the book also explains the way in which ethics and science ? international and local ? have interacted in a policy setting. Scholars and policy makers may find the Singaporean experience to be a valuable resource, as the approach has been to make the ethical governance of research in Singapore consistent with international best practice while observing the requirements of a properly localised application of universally accepted principles. In addition, at least three chapters (the first three chapters in particular) are accessible to the lay reader interested in the development of bioethics and biomedical sciences, both inside and outside Singapore, from 2000 (the year in which the BAC was established). Both scholars and interested lay readers are therefore likely to find this publication a valuable reference.
Download or read book International Ethical Guidelines for Health Related Research Involving Humans written by Council for International Organizations of Medical Sciences (CIOMS) and published by World Health Organization. This book was released on 2017-01-31 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "In the new 2016 version of the ethical guidelines, CIOMS provides answers to a number of pressing issues in research ethics. The Council does so by stressing the need for research having scientific and social value, by providing special guidelines for health-related research in low-resource settings, by detailing the provisions for involving vulnerable groups in research and for describing under what conditions biological samples and health-related data can be used for research."--Page 4 de la couverture.
Download or read book The Immortal Life of Henrietta Lacks written by Rebecca Skloot and published by Crown. This book was released on 2010-02-02 with total page 386 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Download or read book Bioethics Committees and Public Policy written by UNESCO and published by UNESCO Publishing. This book was released on 2019-12-31 with total page 48 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book The Belmont Report written by United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and published by . This book was released on 1978 with total page 614 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Ethical Considerations for Research on Housing Related Health Hazards Involving Children written by Institute of Medicine and published by National Academies Press. This book was released on 2005-11-10 with total page 216 pages. Available in PDF, EPUB and Kindle. Book excerpt: Ethical Considerations for Research on Housing-Related Health Hazards Involving Children explores the ethical issues posed when conducting research designed to identify, understand, or ameliorate housing-related health hazards among children. Such research involves children as subjects and is conducted in the home and in communities. It is often conducted with children in low-income families given the disproportionate prevalence of housing-related conditions such as lead poisoning, asthma, and fatal injuries among these children. This book emphasizes five key elements to address the particular ethical concerns raised by these characteristics: involving the affected community in the research and responding to their concerns; ensuring that parents understand the essential elements of the research; adopting uniform federal guidelines for such research by all sponsors (Subpart D of 45 CFR 46); providing guidance on key terms in the regulations; and viewing research oversight as a system with important roles for researchers, IRBs and their research institutions, sponsors and regulators of research, and the community.
Download or read book Emergency Ethics written by Bruce Jennings and published by Oxford University Press. This book was released on 2016 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: Leading scholars in bioethics and public health ethics clarify the key values and norms of emergency planning and response and address ethical issues relating to the allocation of scarce resources, research in the context of emergencies, community participation in preparedness planning, the protection of those with special needs, and the duties public health professionals.
Download or read book The CTSA Program at NIH written by Institute of Medicine and published by National Academies Press. This book was released on 2013-10-09 with total page 179 pages. Available in PDF, EPUB and Kindle. Book excerpt: In 2006 the National Institutes of Health (NIH) established the Clinical and Translational Science Awards (CTSA) Program, recognizing the need for a new impetus to encourage clinical and translational research. At the time it was very difficult to translate basic and clinical research into clinical and community practice; making it difficult for individual patients and communities to receive its benefits. Since its creation the CTSA Program has expanded, with 61 sites spread across the nation's academic health centers and other institutions, hoping to provide catalysts and test beds for policies and practices that can benefit clinical and translation research organizations throughout the country. The NIH contracted with the Institute of Medicine (IOM) in 2012 to conduct a study to assess and provide recommendations on appropriateness of the CTSA Program's mission and strategic goals and whether changes were needed. The study was also address the implementation of the program by the National Center for Advancing Translational Sciences (NCATS) while exploring the CTSA's contributions in the acceleration of the development of new therapeutics. A 13-member committee was established to head this task; the committee had collective expertise in community outreach and engagement, public health and health policy, bioethics, education and training, pharmaceutical research and development, program evaluation, clinical and biomedical research, and child health research. The CTSA Program at NIH: Opportunities for Advancing Clinical and Translational Research is the result of investigations into previous program evaluations and assessments, open-session meetings and conference class, and the review of scientific literature. Overall, the committee believes that the CTSA Program is significant to the advancement of clinical and translational research through its contributions. The Program would benefit from a variety of revisions, however, to make it more efficient and effective.
Download or read book Sharing Clinical Trial Data written by Institute of Medicine and published by National Academies Press. This book was released on 2015-04-20 with total page 236 pages. Available in PDF, EPUB and Kindle. Book excerpt: Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research-from funders, to researchers, to journals, to physicians, and ultimately, to patients.
