Download or read book Consent Practices and Biomedical Knowledge Production in Tissue Economies written by Aaro Tupasela and published by . This book was released on 2008 with total page 212 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Tissue Economies written by Cathy Waldby and published by Duke University Press. This book was released on 2006-03-20 with total page 246 pages. Available in PDF, EPUB and Kindle. Book excerpt: DIVA cultural studies account of how the "bio-value" of blood, stem cells, organs, and cell lines moves back and forth between 'gift' and 'commodity'./div
Download or read book Bio Objects written by Niki Vermeulen and published by Routledge. This book was released on 2016-04-15 with total page 241 pages. Available in PDF, EPUB and Kindle. Book excerpt: Increasing knowledge of the biological is fundamentally transforming what life itself means and where its boundaries lie. New developments in the biosciences - especially through the molecularisation of life - are (re)shaping healthcare and other aspects of our society. This cutting edge volume studies contemporary bio-objects, or the categories, materialities and processes that are central to the configuring of 'life' today, as they emerge, stabilize and circulate through society. Examining a variety of bio-objects in contexts beyond the laboratory, Bio-Objects: Life in the 21st Century explores new ways of thinking about how novel bio-objects enter contemporary life, analysing the manner in which, among others, the boundaries between human and animal, organic and non-organic, and being 'alive' and the suspension of living, are questioned, destabilised and in some cases re-established. Thematically organised around questions of changing boundaries; the governance and regulation of bio-objects; and changing social, economic and political relations, this book presents rich new case studies from Europe that will be of interest to scholars of science and technology studies, social theory, sociology and law.
Download or read book Craft in Biomedical Research written by Mianna Meskus and published by Springer. This book was released on 2018-05-21 with total page 243 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book explores the new ways in which biology is becoming technology. The revolutionary iPS cell technology has made it possible to turn human skin and blood cells into pluripotent stem cells, thus providing an unprecedented opportunity to study the pathophysiology of diseases, understand human developmental biology, and generate new therapies. Drawing from a rich ethnographic study, Meskus traces the making of the iPS cell technology through the perspectives of clinical translation, laboratory experimentation, and tissue donation by voluntary patients. Discussing non-human agency, the embodied and affective basis of knowledge production, and the material politics of science, the book develops the idea of an instrumentality-care continuum as a fundamental dynamic of biomedical craft. This continuum, Meskus argues, opens up a novel perspective to the commercialization and industrial-scale appropriation of human biology, and thereby to the future of ethical biomedical research.
Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
Download or read book Contested Categories written by Ayo Wahlberg and published by Routledge. This book was released on 2016-05-13 with total page 228 pages. Available in PDF, EPUB and Kindle. Book excerpt: Drawing on social science perspectives, Contested Categories presents a series of empirical studies that engage with the often shifting and day-to-day realities of life sciences categories. In doing so, it shows how such categories remain contested and dynamic, and that the boundaries they create are subject to negotiation as well as re-configuration and re-stabilization processes. Organized around the themes of biological substances and objects, personhood and the genomic body and the creation and dispersion of knowledge, each of the volume’s chapters reveals the elusive nature of fixity with regard to life science categories. With contributions from an international team of scholars, this book will be essential reading for anyone interested in the social, legal, policy and ethical implications of science and technology and the life sciences.
Download or read book Clinical Labor written by Melinda Cooper and published by Duke University Press. This book was released on 2014-01-22 with total page 290 pages. Available in PDF, EPUB and Kindle. Book excerpt: Forms of embodied labor, such as surrogacy and participation in clinical trials, are central to biomedical innovation, but they are rarely considered as labor. Melinda Cooper and Catherine Waldby take on that project, analyzing what they call "clinical labor," and asking what such an analysis might indicate about the organization of the bioeconomy and the broader organization of labor and value today. At the same time, they reflect on the challenges that clinical labor might pose to some of the founding assumptions of classical, Marxist, and post-Fordist theories of labor. Cooper and Waldby examine the rapidly expanding transnational labor markets surrounding assisted reproduction and experimental drug trials. As they discuss, the pharmaceutical industry demands ever greater numbers of trial subjects to meet its innovation imperatives. The assisted reproductive market grows as more and more households look to third-party providers for fertility services and sectors of the biomedical industry seek reproductive tissues rich in stem cells. Cooper and Waldby trace the historical conditions, political economy, and contemporary trajectory of clinical labor. Ultimately, they reveal clinical labor to be emblematic of labor in twenty-first-century neoliberal economies.
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 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 Improving Diagnosis in Health Care written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-12-29 with total page 473 pages. Available in PDF, EPUB and Kindle. Book excerpt: Getting the right diagnosis is a key aspect of health care - it provides an explanation of a patient's health problem and informs subsequent health care decisions. The diagnostic process is a complex, collaborative activity that involves clinical reasoning and information gathering to determine a patient's health problem. According to Improving Diagnosis in Health Care, diagnostic errors-inaccurate or delayed diagnoses-persist throughout all settings of care and continue to harm an unacceptable number of patients. It is likely that most people will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences. Diagnostic errors may cause harm to patients by preventing or delaying appropriate treatment, providing unnecessary or harmful treatment, or resulting in psychological or financial repercussions. The committee concluded that improving the diagnostic process is not only possible, but also represents a moral, professional, and public health imperative. Improving Diagnosis in Health Care, a continuation of the landmark Institute of Medicine reports To Err Is Human (2000) and Crossing the Quality Chasm (2001), finds that diagnosis-and, in particular, the occurrence of diagnostic errorsâ€"has been largely unappreciated in efforts to improve the quality and safety of health care. Without a dedicated focus on improving diagnosis, diagnostic errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity. Just as the diagnostic process is a collaborative activity, improving diagnosis will require collaboration and a widespread commitment to change among health care professionals, health care organizations, patients and their families, researchers, and policy makers. The recommendations of Improving Diagnosis in Health Care contribute to the growing momentum for change in this crucial area of health care quality and safety.
Download or read book The Limits of Consent written by Oonagh Corrigan and published by OUP Oxford. This book was released on 2009-01-29 with total page 256 pages. Available in PDF, EPUB and Kindle. Book excerpt: Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. The Limits of Consent explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous research participant may have significant bearing on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. The Limits of Consent also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. Building on these observations, the authors make bold attempts to outline constructive solutions to the problems identified with perspectives from medicine, law, philosophy and sociology. This fascinating and provocative exploration of the limits of informed consent will appeal to ethicists, social scientists, health lawyers, clinical researchers, research ethics committee members, policy makers, and others with an interest in bioethics.
Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.
Download or read book Governing Medical Knowledge Commons written by Katherine J. Strandburg and published by Cambridge University Press. This book was released on 2017-10-12 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: Governing Medical Knowledge Commons makes three claims: first, evidence matters to innovation policymaking; second, evidence shows that self-governing knowledge commons support effective innovation without prioritizing traditional intellectual property rights; and third, knowledge commons can succeed in the critical fields of medicine and health. The editors' knowledge commons framework adapts Elinor Ostrom's groundbreaking research on natural resource commons to the distinctive attributes of knowledge and information, providing a systematic means for accumulating evidence about how knowledge commons succeed. The editors' previous volume, Governing Knowledge Commons, demonstrated the framework's power through case studies in a diverse range of areas. Governing Medical Knowledge Commons provides fifteen new case studies of knowledge commons in which researchers, medical professionals, and patients generate, improve, and share innovations, offering readers a practical introduction to the knowledge commons framework and a synthesis of conclusions and lessons. The book is also available as Open Access.
Download or read book Biobanks written by Herbert Gottweis and published by Taylor & Francis. This book was released on 2008 with total page 234 pages. Available in PDF, EPUB and Kindle. Book excerpt: In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated. Biobanks: Governance in Comparative Perspective is the first book to explore the political and governance implications of biobanks in Europe, the United States, Asia, and Australia. This book explores: the interrelated conditions needed for a biobank to be created and to exist the rise of the new bio-economy the redefinition of citizenship accompanying national biobank developments This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and the reshaping of current practices in governance. It will be a valuable read for scholars and students of genetics, bioethics, risk, public health and the sociology of health and illness.
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 Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe written by Nils Hoppe and published by Universitätsverlag Göttingen. This book was released on 2011 with total page 183 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project ('Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union--an Evidence-Based Impact Analysis') to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project's results"--Publisher's description
Download or read book Rethinking Causality Complexity and Evidence for the Unique Patient written by Rani Lill Anjum and published by Springer Nature. This book was released on 2020-06-02 with total page 252 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book is a unique resource for health professionals who are interested in understanding the philosophical foundations of their daily practice. It provides tools for untangling the motivations and rationality behind the way medicine and healthcare is studied, evaluated and practiced. In particular, it illustrates the impact that thinking about causation, complexity and evidence has on the clinical encounter. The book shows how medicine is grounded in philosophical assumptions that could at least be challenged. By engaging with ideas that have shaped the medical profession, clinicians are empowered to actively take part in setting the premises for their own practice and knowledge development. Written in an engaging and accessible style, with contributions from experienced clinicians, this book presents a new philosophical framework that takes causal complexity, individual variation and medical uniqueness as default expectations for health and illness.
