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Challenges And Opportunities In Using Residual Newborn Screening Samples For Translational Research
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Book Synopsis Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research by : Institute of Medicine
Download or read book Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research written by Institute of Medicine and published by National Academies Press. This book was released on 2010-11-23 with total page 85 pages. Available in PDF, EPUB and Kindle. Book excerpt: Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.
Author :Roundtable on Translating Genomic-Based Research for Health Publisher : ISBN 13 :9780309383103 Total Pages :84 pages Book Rating :4.3/5 (831 download)
Book Synopsis Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research by : Roundtable on Translating Genomic-Based Research for Health
Download or read book Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research written by Roundtable on Translating Genomic-Based Research for Health and published by . This book was released on 2010-11-23 with total page 84 pages. Available in PDF, EPUB and Kindle. Book excerpt: Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.
Book Synopsis Annual Review of Nursing Research, Volume 29 by : Ginette A. Pepper
Download or read book Annual Review of Nursing Research, Volume 29 written by Ginette A. Pepper and published by Springer Publishing Company. This book was released on 2012-05-29 with total page 402 pages. Available in PDF, EPUB and Kindle. Book excerpt: Print+CourseSmart
Book Synopsis Designing Clinical Research by : Warren S. Browner
Download or read book Designing Clinical Research written by Warren S. Browner and published by Lippincott Williams & Wilkins. This book was released on 2022-01-27 with total page 589 pages. Available in PDF, EPUB and Kindle. Book excerpt: For more than 30 years, Designing Clinical Research has set the standard as the most practical, authoritative guide for physicians, nurses, pharmacists, and other practitioners involved in all forms of clinical and public health research. Using a reader-friendly writing style, Drs. Warren S. Browner, Thomas B. Newman, Steven R. Cummings, Deborah G. Grady, Alison J. Huang, Alka M. Kanaya, and Mark J. Pletcher, all of the University of California, San Francisco, provide up-to-date, commonsense approaches to the challenging judgments involved in designing, funding, and implementing a study. This state-of-the-art fifth edition features new figures, tables, and design, as well as new editors, new content, and extensively updated references to keep you current.
Book Synopsis Privacy, Confidentiality, and Health Research by : William W. Lowrance
Download or read book Privacy, Confidentiality, and Health Research written by William W. Lowrance and published by Cambridge University Press. This book was released on 2012-06-21 with total page 203 pages. Available in PDF, EPUB and Kindle. Book excerpt: The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
Book Synopsis Saving Babies? by : Stefan Timmermans
Download or read book Saving Babies? written by Stefan Timmermans and published by University of Chicago Press. This book was released on 2015-05-06 with total page 320 pages. Available in PDF, EPUB and Kindle. Book excerpt: Introduction: the consequences of newborn screening -- The expansion of newborn screening -- Patients-in-waiting -- Shifting disease ontologies -- Is my baby normal? -- The limits of prevention -- Does expanded newborn screening save lives? -- Conclusion: the future of expanded newborn screening
Book Synopsis Informing the Future by : Institute of Medicine
Download or read book Informing the Future written by Institute of Medicine and published by National Academies Press. This book was released on 2011-10-12 with total page 203 pages. Available in PDF, EPUB and Kindle. Book excerpt: This report illustrates the work of IOM committees in selected, major areas in recent years, followed by a description of IOM's convening and collaborative activities and fellowship programs. The last section provides a comprehensive bibliography of IOM reports published since 2007.
Book Synopsis Sustaining Surveillance: The Importance of Information for Public Health by : John G. Francis
Download or read book Sustaining Surveillance: The Importance of Information for Public Health written by John G. Francis and published by Springer Nature. This book was released on 2021-03-17 with total page 224 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects.
Download or read book The Writers Directory written by and published by . This book was released on 2013 with total page 608 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Newborn Screening for Pompe Disease by : Wuh-Liang Hwu
Download or read book Newborn Screening for Pompe Disease written by Wuh-Liang Hwu and published by MDPI. This book was released on 2021-09-02 with total page 146 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pompe disease, also known as acid maltase deficiency or acid alpha-glucosidase deficiency, in its most severe form results in a rapidly progressive, neonatal-onset skeletal and cardiomyopathy, leading to early infantile death without treatment. The development of treatment with recombinant enzyme replacement therapy radically transformed the clinical trajectory of those affected, enabling long-term ventilator-free survival with resolution of cardiomyopathy. These positive clinical outcomes resulted in the implementation of newborn screening programs for Pompe disease across the world. This Special Issue highlights some of the experiences of Pompe screening programs worldwide and discusses public policy and ethical issues elicited by presymptomatic screening for Pompe disease.
Download or read book The PKU Paradox written by Diane B. Paul and published by JHU Press. This book was released on 2013-12 with total page 316 pages. Available in PDF, EPUB and Kindle. Book excerpt: How did a disease of marginal public health significance acquire paradigmatic status in public health and genetics? In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth.
Book Synopsis The Oxford Handbook of Public Health Ethics by : Anna C. Mastroianni
Download or read book The Oxford Handbook of Public Health Ethics written by Anna C. Mastroianni and published by Oxford University Press. This book was released on 2019-07-23 with total page 992 pages. Available in PDF, EPUB and Kindle. Book excerpt: Natural disasters and cholera outbreaks. Ebola, SARS, and concerns over pandemic flu. HIV and AIDS. E. coli outbreaks from contaminated produce and fast foods. Threats of bioterrorism. Contamination of compounded drugs. Vaccination refusals and outbreaks of preventable diseases. These are just some of the headlines from the last 30-plus years highlighting the essential roles and responsibilities of public health, all of which come with ethical issues and the responsibilities they create. Public health has achieved extraordinary successes. And yet these successes also bring with them ethical tension. Not all public health successes are equally distributed in the population; extraordinary health disparities between rich and poor still exist. The most successful public health programs sometimes rely on policies that, while improving public health conditions, also limit individual rights. Public health practitioners and policymakers face these and other questions of ethics routinely in their work, and they must navigate their sometimes competing responsibilities to the health of the public with other important societal values such as privacy, autonomy, and prevailing cultural norms. This Oxford Handbook provides a sweeping and comprehensive review of the current state of public health ethics, addressing these and numerous other questions. Taking account of the wide range of topics under the umbrella of public health and the ethical issues raised by them, this volume is organized into fifteen sections. It begins with two sections that discuss the conceptual foundations, ethical tensions, and ethical frameworks of and for public health and how public health does its work. The thirteen sections that follow examine the application of public health ethics considerations and approaches across a broad range of public health topics. While chapters are organized into topical sections, each chapter is designed to serve as a standalone contribution. The book includes 73 chapters covering many topics from varying perspectives, a recognition of the diversity of the issues that define public health ethics in the U.S. and globally. This Handbook is an authoritative and indispensable guide to the state of public health ethics today.
Book Synopsis Genomic Essentials for Graduate Level Nurses by : Diane C. Seibert
Download or read book Genomic Essentials for Graduate Level Nurses written by Diane C. Seibert and published by DEStech Publications, Inc. This book was released on 2016-02-29 with total page 460 pages. Available in PDF, EPUB and Kindle. Book excerpt: Presents genetics and genomic essentials specifically for graduate-level nursesPrenatal care, cardiology, cancer and other disease systems covered in depth by chapter expertsKey chapter devoted to ethical and legal issues and to future technology Designed as both a nursing reference and course text, this book presents genetics and genomic essentials specifically for graduate-level nurses. Preliminary chapters cover the basics of genetics, risk assessment and genetic testing. With chapter contributions by topic experts, the remainder of the book is organized by disease system and covers genetics and genomics in prenatal care, neurology, cancer, respiratory function, cardiology, pharmacogenomics, hematology and others. Key chapters on ethical and legal issues and future technology are also included. This volume is well-suited for nursing faculty, nursing students, nurse leaders, and other nursing professionals with a need for further information on genetics and genomics in a nursing role and across a variety of specialties.
Book Synopsis The Immortal Life of Henrietta Lacks by : Rebecca Skloot
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.
Author :Dr. Marilyn Krajicek, PhD, RN, FAAN Publisher :Springer Publishing Company ISBN 13 :0826169627 Total Pages :396 pages Book Rating :4.8/5 (261 download)
Book Synopsis Guidelines for Nursing Excellence in the Care of Children, Youth, and Families, Second Edition by : Dr. Marilyn Krajicek, PhD, RN, FAAN
Download or read book Guidelines for Nursing Excellence in the Care of Children, Youth, and Families, Second Edition written by Dr. Marilyn Krajicek, PhD, RN, FAAN and published by Springer Publishing Company. This book was released on 2017-10-28 with total page 396 pages. Available in PDF, EPUB and Kindle. Book excerpt: First Edition Designated a Doody's Core Title and Winner of an AJN Book of the Year Award! This distinguished title, written by nationally recognized nursing experts in health care and pediatrics, delivers the most current evidence-based practice standards and their application. These guidelines, developed through systematic consensus-building led by the AAN’s Child, Adolescent, and Family Expert Panel, incorporates the wisdom of 17 professional nursing and healthcare organizations regarding the core elements of pediatric nursing excellence. This second edition contains substantial updates to all guidelines based on the most current research evidence and demonstrates examples of how to best apply the guidelines to nursing practice. Disseminating the gold standard of care for infants, children, adolescents, and families, this text addresses access to health care, genetic assessment and counseling, culturally responsive care, care for children and youth with disabilities, and others. Every chapter breaks down a guideline into its definition, history, and implications for clinical, education, policy, and research in nursing practice. A case study based around the analyzed guideline illustrates how the guideline should be employed in nursing practice culminates every chapter. Replete with supplemental online files full of resources to apply these guidelines to nursing practice, Guidelines for Nursing Excellence in the Care of Children, Youth, and Families represents an invaluable resource for pediatric nurses, nursing students, nursing educators, nursing administrators, pediatric and family nurse practitioners, advanced practice nurses, nursing clinicians in public health, school nurses, and nurse researchers. New to the Second Edition: Significant updates to all 17 guidelines based on latest research evidence Contributions by five new nursing and health care organizations A new chapter organizational framework incorporating useful pedagogical elements Examples of applications to education, research, policy, and clinical practice A new faculty toolkit Key Features: Provides current pediatric practice standards formatted and endorsed by 17 leading professional nursing and health care organizations Includes content applicable to advanced practice nurses, educators, researchers, and consultants Includes learning objectives, description of guidelines, applications to practice, exemplars, references, and websites for additional resources
Book Synopsis Translational Informatics in Smart Healthcare by : Bairong Shen
Download or read book Translational Informatics in Smart Healthcare written by Bairong Shen and published by Springer. This book was released on 2017-09-15 with total page 220 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book is about the transformation of the biomedical information to smart healthcare, the chapters are designed to discuss the health associated factors such as genetics, lifestyle, nutrition and environmental factors. The interactions of these factors and the informatics for the analyses of their effects on health are also covered. The era of aging is approaching and the P4 (predictive, preventive, personalized and participatory) medicine paradigm is becoming practical and reality. According to the Kondratiev's long wave theory, IT (information technology) and health will be the next technological revolution for the new economic cycle. This book is written for biomedical informatics scientists, clinicians, health practitioners and researchers, etc.
Download or read book Minnesota Law Review written by and published by . This book was released on 2013 with total page 842 pages. Available in PDF, EPUB and Kindle. Book excerpt:
