Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
Download or read book New York State Genetic Reimbursement Study written by David Axelrod and published by . This book was released on 1988 with total page 152 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Care Without Coverage written by Institute of Medicine and published by National Academies Press. This book was released on 2002-06-20 with total page 213 pages. Available in PDF, EPUB and Kindle. Book excerpt: Many Americans believe that people who lack health insurance somehow get the care they really need. Care Without Coverage examines the real consequences for adults who lack health insurance. The study presents findings in the areas of prevention and screening, cancer, chronic illness, hospital-based care, and general health status. The committee looked at the consequences of being uninsured for people suffering from cancer, diabetes, HIV infection and AIDS, heart and kidney disease, mental illness, traumatic injuries, and heart attacks. It focused on the roughly 30 million-one in seven-working-age Americans without health insurance. This group does not include the population over 65 that is covered by Medicare or the nearly 10 million children who are uninsured in this country. The main findings of the report are that working-age Americans without health insurance are more likely to receive too little medical care and receive it too late; be sicker and die sooner; and receive poorer care when they are in the hospital, even for acute situations like a motor vehicle crash.
Download or read book An Evidence Framework for Genetic Testing written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-21 with total page 149 pages. Available in PDF, EPUB and Kindle. Book excerpt: Advances in genetics and genomics are transforming medical practice, resulting in a dramatic growth of genetic testing in the health care system. The rapid development of new technologies, however, has also brought challenges, including the need for rigorous evaluation of the validity and utility of genetic tests, questions regarding the best ways to incorporate them into medical practice, and how to weigh their cost against potential short- and long-term benefits. As the availability of genetic tests increases so do concerns about the achievement of meaningful improvements in clinical outcomes, costs of testing, and the potential for accentuating medical care inequality. Given the rapid pace in the development of genetic tests and new testing technologies, An Evidence Framework for Genetic Testing seeks to advance the development of an adequate evidence base for genetic tests to improve patient care and treatment. Additionally, this report recommends a framework for decision-making regarding the use of genetic tests in clinical care.
Download or read book Returning Individual Research Results to Participants written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-08-23 with total page 399 pages. Available in PDF, EPUB and Kindle. Book excerpt: When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.
Download or read book Communities in Action written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-27 with total page 583 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the United States, some populations suffer from far greater disparities in health than others. Those disparities are caused not only by fundamental differences in health status across segments of the population, but also because of inequities in factors that impact health status, so-called determinants of health. Only part of an individual's health status depends on his or her behavior and choice; community-wide problems like poverty, unemployment, poor education, inadequate housing, poor public transportation, interpersonal violence, and decaying neighborhoods also contribute to health inequities, as well as the historic and ongoing interplay of structures, policies, and norms that shape lives. When these factors are not optimal in a community, it does not mean they are intractable: such inequities can be mitigated by social policies that can shape health in powerful ways. Communities in Action: Pathways to Health Equity seeks to delineate the causes of and the solutions to health inequities in the United States. This report focuses on what communities can do to promote health equity, what actions are needed by the many and varied stakeholders that are part of communities or support them, as well as the root causes and structural barriers that need to be overcome.
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 Am I My Genes written by Robert L. Klitzman M.D. and published by Oxford University Press. This book was released on 2012-03-01 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center
Download or read book Strengthening Forensic Science in the United States written by National Research Council and published by National Academies Press. This book was released on 2009-07-29 with total page 348 pages. Available in PDF, EPUB and Kindle. Book excerpt: Scores of talented and dedicated people serve the forensic science community, performing vitally important work. However, they are often constrained by lack of adequate resources, sound policies, and national support. It is clear that change and advancements, both systematic and scientific, are needed in a number of forensic science disciplines to ensure the reliability of work, establish enforceable standards, and promote best practices with consistent application. Strengthening Forensic Science in the United States: A Path Forward provides a detailed plan for addressing these needs and suggests the creation of a new government entity, the National Institute of Forensic Science, to establish and enforce standards within the forensic science community. The benefits of improving and regulating the forensic science disciplines are clear: assisting law enforcement officials, enhancing homeland security, and reducing the risk of wrongful conviction and exoneration. Strengthening Forensic Science in the United States gives a full account of what is needed to advance the forensic science disciplines, including upgrading of systems and organizational structures, better training, widespread adoption of uniform and enforceable best practices, and mandatory certification and accreditation programs. While this book provides an essential call-to-action for congress and policy makers, it also serves as a vital tool for law enforcement agencies, criminal prosecutors and attorneys, and forensic science educators.
Download or read book Birth Settings in America written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2020-05-01 with total page 369 pages. Available in PDF, EPUB and Kindle. Book excerpt: The delivery of high quality and equitable care for both mothers and newborns is complex and requires efforts across many sectors. The United States spends more on childbirth than any other country in the world, yet outcomes are worse than other high-resource countries, and even worse for Black and Native American women. There are a variety of factors that influence childbirth, including social determinants such as income, educational levels, access to care, financing, transportation, structural racism and geographic variability in birth settings. It is important to reevaluate the United States' approach to maternal and newborn care through the lens of these factors across multiple disciplines. Birth Settings in America: Outcomes, Quality, Access, and Choice reviews and evaluates maternal and newborn care in the United States, the epidemiology of social and clinical risks in pregnancy and childbirth, birth settings research, and access to and choice of birth settings.
Download or read book The Philadelphia Chromosome A Genetic Mystery a Lethal Cancer and the Improbable Invention of a Lifesaving Treatment written by Jessica Wapner and published by The Experiment, LLC. This book was released on 2014-04-08 with total page 345 pages. Available in PDF, EPUB and Kindle. Book excerpt: One of The Wall Street Journal’s 10 Best Nonfiction Books of the Year Philadelphia, 1959: A scientist scrutinizing a single human cell under a microscope detects a missing piece of DNA. That scientist, David Hungerford, had no way of knowing that he had stumbled upon the starting point of modern cancer research— the Philadelphia chromosome. It would take doctors and researchers around the world more than three decades to unravel the implications of this landmark discovery. In 1990, the Philadelphia chromosome was recognized as the sole cause of a deadly blood cancer, chronic myeloid leukemia, or CML. Cancer research would never be the same. Science journalist Jessica Wapner reconstructs more than forty years of crucial breakthroughs, clearly explains the science behind them, and pays tribute—with extensive original reporting, including more than thirty-five interviews—to the dozens of researchers, doctors, and patients with a direct role in this inspirational story. Their curiosity and determination would ultimately lead to a lifesaving treatment unlike anything before it. The Philadelphia Chromosome chronicles the remarkable change of fortune for the more than 70,000 people worldwide who are diagnosed with CML each year. It is a celebration of a rare triumph in the battle against cancer and a blueprint for future research, as doctors and scientists race to uncover and treat the genetic roots of a wide range of cancers.
Download or read book Fulfilling the Potential of Cancer Prevention and Early Detection written by National Research Council and published by National Academies Press. This book was released on 2003-05-07 with total page 564 pages. Available in PDF, EPUB and Kindle. Book excerpt: Cancer ranks second only to heart disease as a leading cause of death in the United States, making it a tremendous burden in years of life lost, patient suffering, and economic costs. Fulfilling the Potential for Cancer Prevention and Early Detection reviews the proof that we can dramatically reduce cancer rates. The National Cancer Policy Board, part of the Institute of Medicine, outlines a national strategy to realize the promise of cancer prevention and early detection, including specific and wide-ranging recommendations. Offering a wealth of information and directly addressing major controversies, the book includes: A detailed look at how significantly cancer could be reduced through lifestyle changes, evaluating approaches used to alter eating, smoking, and exercise habits. An analysis of the intuitive notion that screening for cancer leads to improved health outcomes, including a discussion of screening methods, potential risks, and current recommendations. An examination of cancer prevention and control opportunities in primary health care delivery settings, including a review of interventions aimed at improving provider performance. Reviews of professional education and training programs, research trends and opportunities, and federal programs that support cancer prevention and early detection. This in-depth volume will be of interest to policy analysts, cancer and public health specialists, health care administrators and providers, researchers, insurers, medical journalists, and patient advocates.
Download or read book Your Genes Your Choices written by Catherine Baker and published by . This book was released on 1996 with total page 96 pages. Available in PDF, EPUB and Kindle. Book excerpt: Program discusses the Human Genome Project, the science behind it, and the ethical, legal and social issues raised by the project.
Download or read book Nature s Thumbprint written by Peter B. Neubauer and published by Columbia University Press. This book was released on 1996 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: Examining the interactive roles of nature and nurture in psychological and physical development, Neubauer and Neubauer show how each person is greater than the sum of his or her parts. They discuss how temperament, tastes and skills unfold throughout life and the need for this to remain unimpeded.
Download or read book The Future of the Public s Health in the 21st Century written by Institute of Medicine and published by National Academies Press. This book was released on 2003-02-01 with total page 536 pages. Available in PDF, EPUB and Kindle. Book excerpt: The anthrax incidents following the 9/11 terrorist attacks put the spotlight on the nation's public health agencies, placing it under an unprecedented scrutiny that added new dimensions to the complex issues considered in this report. The Future of the Public's Health in the 21st Century reaffirms the vision of Healthy People 2010, and outlines a systems approach to assuring the nation's health in practice, research, and policy. This approach focuses on joining the unique resources and perspectives of diverse sectors and entities and challenges these groups to work in a concerted, strategic way to promote and protect the public's health. Focusing on diverse partnerships as the framework for public health, the book discusses: The need for a shift from an individual to a population-based approach in practice, research, policy, and community engagement. The status of the governmental public health infrastructure and what needs to be improved, including its interface with the health care delivery system. The roles nongovernment actors, such as academia, business, local communities and the media can play in creating a healthy nation. Providing an accessible analysis, this book will be important to public health policy-makers and practitioners, business and community leaders, health advocates, educators and journalists.
Download or read book Genetic Analysis written by Raphael Falk and published by Cambridge University Press. This book was released on 2009-05-14 with total page 331 pages. Available in PDF, EPUB and Kindle. Book excerpt: There is a paradox lying at the heart of the study of heredity. To understand the ways in which features are passed on down from one generation to the next, we have to dig deeper and deeper into the ultimate nature of things - from organisms, to genes, to molecules. And yet as we do this, increasingly we find we are out of focus with our subjects. What has any of this to do with the living, breathing organisms with which we started? Organisms are living. Molecules are not. How do we relate one to the other? In Genetic Analysis, one of the most important empirical scientists in the field in the twentieth century attempts, through a study of history and drawing on his own vast experience as a practitioner, to face this paradox head-on. His book offers a deep and innovative understanding of our ways of thinking about heredity.
Download or read book A Checklist of Official Publications of the State of New York written by New York State Library and published by . This book was released on 1989 with total page 464 pages. Available in PDF, EPUB and Kindle. Book excerpt:
