Promoting Safe And Effective Genetic Testing In The United States
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Promoting Safe and Effective Genetic Testing in the United States by Task Force on Genetic Testing (U.S.) Pdf
In view of this uncertainty, the Working Group on Ethical, Legal, and Social Implications of Human Genome Research at the National Institutes of Health and Department of Energy created the Task Force on Genetic Testing.
Genetics Testing in the New Millennium, Advances, Standards, and Inplications by United States. Congress. House. Committee on Science. Subcommittee on Technology Pdf
Assessing Genetic Risks by Institute of Medicine,Committee on Assessing Genetic Risks Pdf
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.
National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law
Author : National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law Publisher : National Academies Press Page : 106 pages File Size : 55,8 Mb Release : 2011-01-16 Category : Medical ISBN : 9780309162166
Direct-to-Consumer Genetic Testing by National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law Pdf
Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.
Informed Consent in Predictive Genetic Testing by Jessica Minor Pdf
This important book proposes revising the current informed consent protocol for predictive genetic testing to reflect the trend toward patient-centered medicine. Emphasizing the predictive aspect of testing, the author analyzes the state of informed consent procedure in terms of three components: comprehension of risk assessment, disclosure to select appropriate treatment, and voluntariness. The book's revised model revisits these cornerstones, restructuring the consent process to allow for expanded comprehension time, enhanced patient safety, greater patient involvement and autonomy, and reduced chance of coercion by family or others. A comparison of the current and revised versions and case studies showing the new model in real-world applications add extra usefulness to this resource. Included in the coverage: The science behind PGT. Understanding genetic risks and probability. The history of informed consent. Revised model of informed consent: comprehension, disclosure, voluntariness, patient safety. Applications of the model in DTC and pleiotropic genetic testing. Implementation of the revised model, and assessing its effectiveness. A milestone in the bioethics literature, Informed Consent in Predictive Genetic Testing will be of considerable interest to genetic counselors, medical and bioethicists, and public health professionals.
Ethics and the Business of Bioscience by Margaret L. Eaton Pdf
Businesses that produce bioscience productsgene tests and therapies, pharmaceuticals, vaccines, and medical devicesare regularly confronted with ethical issues concerning these technologies. Conflicts exist between those who support advancements in bioscience and those who fear the consequences of unfettered scientific license. As the debate surrounding bioscience grows, it will be increasingly important for business managers to consider the larger consequences of their work. This groundbreaking book follows industry research, development, and marketing of medical and bioscience products across a variety of fields, including biotechnology, pharmaceuticals, and bio-agriculture. Compelling and current case studies highlight the ethical decisions business managers frequently face. With the increasing visibility and public expectation placed on businesses in this sector, managers need to understand the ethical and social issues. This book addresses that need and provides a framework for incorporating ethical analysis in business decision making.
Genetics Testing in the New Millennium, Advances, Standards, and Implications by United States. Congress. House. Committee on Science. Subcommittee on Technology Pdf
This widely adopted textbook provides the essential content and skill-building tools for teaching the responsible conduct of scientific research. Scientific Integrity covers the breadth of concerns faced by scientists: protection of animal and human experimental subjects, scientific publication, intellectual property, conflict of interest, collaboration, record keeping, mentoring, and the social and ethical responsibilities of scientists. Learning activities and resources designed to elucidate the principles of Scientific Integrity include Dozens of highly relevant, interactive case studies for discussion in class or online Numerous print and online resources covering the newest research guidelines, regulations, mandates and policies Discussion questions, role-playing exercises, and survey tools to promote critical thought Documents including published rules of conduct, sample experimentation protocols, and patent applications The new edition of Scientific Integrity responds to significant recent changes—new mandates, policies, laws, and other developments—in the field of responsible conduct of research. Dr. Macrina plants the seeds of awareness of existing, changing, and emerging standards in scientific conduct and provides the tools to promote critical thinking in the use of that information. Scientific Integrity is the original turnkey text to guide the next generations of scientists as well as practicing researchers in the essential skills and approaches for the responsible conduct of science.
National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Board on the Health of Select Populations,Committee on the Evidence Base for Genetic Testing
Author : National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Board on the Health of Select Populations,Committee on the Evidence Base for Genetic Testing Publisher : National Academies Press Page : 149 pages File Size : 42,8 Mb Release : 2017-04-21 Category : Medical ISBN : 9780309453295
An Evidence Framework for Genetic Testing by National Academies of Sciences, Engineering, and Medicine,Health and Medicine Division,Board on Health Care Services,Board on the Health of Select Populations,Committee on the Evidence Base for Genetic Testing Pdf
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.
Author : Muin J. Khoury,Wylie Burke,Elizabeth Jean Thomson Publisher : Oxford University Press, USA Page : 661 pages File Size : 40,5 Mb Release : 2000 Category : Language Arts & Disciplines ISBN : 9780195128307
This accessibly written book introduces readers to DNA—one of the most important technologies for the manipulation of all forms of life, from simple bacteria to plants and animals. It also addresses the most important social, ethical, political, economic, and other issues raised by this form of technology. The great strides made in our understanding of the structure and function of DNA in recent decades have led to applying this invaluable knowledge to use in serving humanity. For example, recent discoveries in the field of genetic editing have created the potential for the creation of life forms de novo, a possibility that results in profound ethical issues for the human race that are just beginning to be discussed. What other positive—and potentially negative—developments are coming our way with continuing advancements in DNA research? DNA Technology: A Reference Handbook provides an up-to-date historical overview and general technical background to the topic as well as a broad introduction to current issues related to the development of DNA technology, such as genetically modified organisms, the use of DNA technology in the forensic sciences, and genetic testing and genetic therapy. Written by David E. Newton, an author and former teacher who has dedicated a lifetime to authoring educational texts on science and technology, this book examines the history of DNA technology from its discovery in the 1950s to the present day and covers recent advances, such as new methods for gene editing, including CRISP-Cas9 technology. Readers need to have little or no background knowledge of the technology of genetic engineering to improve their understanding of DNA-based technologies and how DNA research influences many current issues and debates in agriculture, food science, forensics, public health, and other fields. The single-volume work is particularly well-suited to students and young adults because of the range of references included that serve further study, such as a glossary of terms, a chronology, and an extensive annotated bibliography.
Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism by Anonim Pdf
The authoritative reference to bone diseases and disorders of mineral metabolism, revised and updated Now in its ninth edition, The Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism offers an updated and comprehensive guide to bone and mineral health. Since it was first published 30 years ago, the Primer has become the leading reference on the topic. With contributions from noted experts, the text explores basic biological factors of healthy development and disease states and makes the information accessible for clinical interventions. The ninth edition provides concise coverage of the widest possible spectrum of metabolic bone diseases and disorders of mineral metabolism. The new edition of this invaluable reference expands coverage and includes the most recent developments in the field that help to strengthen its usefulness and ensure that the Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism maintains its place as the pre-eminent reference on bone and mineral health. This vital resource: Provides the most accurate, up-to-date evidence-based information on basic and clinical bone science Includes more than 10 new chapters and contributions from 300 authors from wide-ranging international research centers Captures the very cutting edge of research covering mineral homeostasis, osteoporosis and other metabolic bone diseases, skeletal measurement technologies, and genetics Presents a new companion website with useful supplementary materials at www.asbmrprimer.com Written for advanced students, clinicians, and researchers working in the field of bone health and disease, Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism is the definitive, one-stop reference for anyone working in the field of bone health and disease.
This timely volume clearly lays out the central ethical questions raised by today's rapid advances in biotechnology. James Peterson sorts through the maze of clinical decisions occasioned by human genetic intervention, organizing the range of moral considerations that now face us and exploring their practical impact on individuals, families, and communities. / The ethical question are covered in the order of how soon the particular technologies that raise them are becoming available. This unique format allows readers to go directly to issues of particular interest. Peterson assumes no prior knowledge of genetics or ethics, making his work one of the most accessible discussions of bioethics available today.
The New Genetics: From Research into Health Care by Irmgard Nippert,Heidemarie Neitzel,Gerhard Wolff Pdf
ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants.
The Ethics of Genetic Commerce by Robert W. Kolb Pdf
Our rapidly expanding genetic knowledge today points toward a near future in which the elements of humanity closest to our moral core may themselves be produced, manipulated, commodified, and exchanged. Explores the moral and ethical concerns derived from an increasing knowledge of genetics and the variety of its commercial applications A major contribution to the emerging understanding of the role that ethics will play in genetic commerce Written by experts from the academic and corporate sector, with diverse backgrounds in business, social science, and philosophy Addresses a range of relevant issues, including genetic screening, the use of individual’s genetic information, the rise of genetically modified foods, patenting, pharmaceutical mergers and monopolization, and the implications of genetic testing on non-human mammals