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Privacy Concerns Raised By The Collection And Use Of Genetic Information By Employers And Insurers
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Book Synopsis Assessing Genetic Risks by : Institute of Medicine
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.
Author :United States. Congress. House. Committee on the Judiciary. Subcommittee on the Constitution Publisher : ISBN 13 : Total Pages :76 pages Book Rating :4.:/5 (327 download)
Book Synopsis Privacy Concerns Raised by the Collection and Use of Genetic Information by Employers and Insurers by : United States. Congress. House. Committee on the Judiciary. Subcommittee on the Constitution
Download or read book Privacy Concerns Raised by the Collection and Use of Genetic Information by Employers and Insurers written by United States. Congress. House. Committee on the Judiciary. Subcommittee on the Constitution and published by . This book was released on 2002 with total page 76 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Author :Australia. Law Reform Commission Publisher :Sydney : Australian Law Reform Commission ISBN 13 :9780642732118 Total Pages :441 pages Book Rating :4.7/5 (321 download)
Book Synopsis Protection of Human Genetic Information by : Australia. Law Reform Commission
Download or read book Protection of Human Genetic Information written by Australia. Law Reform Commission and published by Sydney : Australian Law Reform Commission. This book was released on 2001 with total page 441 pages. Available in PDF, EPUB and Kindle. Book excerpt: 13. Law enforcement issues
Book Synopsis A Companion to Genethics by : Justine Burley
Download or read book A Companion to Genethics written by Justine Burley and published by John Wiley & Sons. This book was released on 2008-04-15 with total page 508 pages. Available in PDF, EPUB and Kindle. Book excerpt: A Companion to Genethics is the first substantial study of the multifaceted dimensions of the genetic revolution and its philosophical, ethical, social and political significance. Brings together the best and most influential writing about the ethics of genetics; Includes 33 newly-commissioned essays, all written by prominent figures in the field; Shows how there is scarcely a part of our lives left unaffected by the impact of the new genetics.
Author :Agency for Healthcare Research and Quality/AHRQ Publisher :Government Printing Office ISBN 13 :1587634333 Total Pages :385 pages Book Rating :4.5/5 (876 download)
Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ
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.
Book Synopsis Beyond the HIPAA Privacy Rule by : Institute of Medicine
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.
Book Synopsis Direct-to-Consumer Genetic Testing by : National Research Council
Download or read book Direct-to-Consumer Genetic Testing written by National Research Council and published by National Academies Press. This book was released on 2011-01-16 with total page 106 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies by : Sorin Hostiuc
Download or read book Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies written by Sorin Hostiuc and published by Academic Press. This book was released on 2018-08-07 with total page 434 pages. Available in PDF, EPUB and Kindle. Book excerpt: Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. - Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive genetics - Contains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technology - Discusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more
Book Synopsis Environmental Epigenetics by : L. Joseph Su
Download or read book Environmental Epigenetics written by L. Joseph Su and published by Springer. This book was released on 2015-05-18 with total page 327 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book examines the toxicological and health implications of environmental epigenetics and provides knowledge through an interdisciplinary approach. Included in this volume are chapters outlining various environmental risk factors such as phthalates and dietary components, life states such as pregnancy and ageing, hormonal and metabolic considerations and specific disease risks such as cancer cardiovascular diseases and other non-communicable diseases. Environmental Epigenetics imparts integrative knowledge of the science of epigenetics and the issues raised in environmental epidemiology. This book is intended to serve both as a reference compendium on environmental epigenetics for scientists in academia, industry and laboratories and as a textbook for graduate level environmental health courses. Environmental Epigenetics imparts integrative knowledge of the science of epigenetics and the issues raised in environmental epidemiology. This book is intended to serve both as a reference compendium on environmental epigenetics for scientists in academia, industry and laboratories and as a textbook for graduate level environmental health courses.
Book Synopsis Engaging Privacy and Information Technology in a Digital Age by : National Research Council
Download or read book Engaging Privacy and Information Technology in a Digital Age written by National Research Council and published by National Academies Press. This book was released on 2007-06-28 with total page 450 pages. Available in PDF, EPUB and Kindle. Book excerpt: Privacy is a growing concern in the United States and around the world. The spread of the Internet and the seemingly boundaryless options for collecting, saving, sharing, and comparing information trigger consumer worries. Online practices of business and government agencies may present new ways to compromise privacy, and e-commerce and technologies that make a wide range of personal information available to anyone with a Web browser only begin to hint at the possibilities for inappropriate or unwarranted intrusion into our personal lives. Engaging Privacy and Information Technology in a Digital Age presents a comprehensive and multidisciplinary examination of privacy in the information age. It explores such important concepts as how the threats to privacy evolving, how can privacy be protected and how society can balance the interests of individuals, businesses and government in ways that promote privacy reasonably and effectively? This book seeks to raise awareness of the web of connectedness among the actions one takes and the privacy policies that are enacted, and provides a variety of tools and concepts with which debates over privacy can be more fruitfully engaged. Engaging Privacy and Information Technology in a Digital Age focuses on three major components affecting notions, perceptions, and expectations of privacy: technological change, societal shifts, and circumstantial discontinuities. This book will be of special interest to anyone interested in understanding why privacy issues are often so intractable.
Book Synopsis Genetic Secrets by : Mark A. Rothstein
Download or read book Genetic Secrets written by Mark A. Rothstein and published by Yale University Press. This book was released on 1997-01-01 with total page 532 pages. Available in PDF, EPUB and Kindle. Book excerpt: The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise--from research and clinical settings to workplaces, insurance offices, schools, and the courts. The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.
Book Synopsis Capturing Social and Behavioral Domains and Measures in Electronic Health Records by : Institute of Medicine
Download or read book Capturing Social and Behavioral Domains and Measures in Electronic Health Records written by Institute of Medicine and published by National Academies Press. This book was released on 2015-01-08 with total page 287 pages. Available in PDF, EPUB and Kindle. Book excerpt: Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material. Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.
Book Synopsis Genetics and Life Insurance by : Mark A. Rothstein
Download or read book Genetics and Life Insurance written by Mark A. Rothstein and published by MIT Press. This book was released on 2004 with total page 320 pages. Available in PDF, EPUB and Kindle. Book excerpt: Experts discuss the economic, legal, and social issues surrounding the use of genetic testing in determining eligibility for life insurance. Insurance companies routinely use an individual's medical history and family medical history in determining eligibility for life insurance; this is part of the process of medical underwriting. Insurers have also long used genetic information, often derived from family history, in underwriting. But rapid advances in gene identification and genetic testing are changing the way we look at genetic information. Should the results of genetic testing (which might identify a predisposition toward disease not related to medical history) be available to life insurance medical underwriters? Few if any life insurers currently require genetic testing, but there are no laws or regulations prohibiting its use. Genetics and Life Insurance examines the complex economic, legal, and social issues surrounding the use of genetic information in life insurance underwriting. The contributors are legal scholars, representatives of the life insurance industry (including an actuary and an insurance physician), a geneticist, a genetic counselor, a philosopher, and a consumer advocate. They explore all aspects of an issue that has only recently drawn the attention of policymakers and the public. The book opens with a report on the results of a public opinion poll on genetics and life insurance. Succeeding chapters present the insurer perspective, a discussion of the economics of risk selection in life insurance, background information on the process of underwriting, a scientific analysis of genetic risks and mortality rates, a philosophical discussion of fairness and genetic underwriting, the viewpoints of consumers and genetics counselors, a comparison of different international policy approaches to the issue, and a legal analysis of antitrust implications when insurers collaborate in setting standards for medical underwriting. In the final chapter the editor addresses various policy options, examining the pros and cons of each one and assessing their political feasibility.
Book Synopsis How to Practice Academic Medicine and Publish from Developing Countries? by : Samiran Nundy
Download or read book How to Practice Academic Medicine and Publish from Developing Countries? written by Samiran Nundy and published by Springer Nature. This book was released on 2021-10-23 with total page 475 pages. Available in PDF, EPUB and Kindle. Book excerpt: This is an open access book. The book provides an overview of the state of research in developing countries – Africa, Latin America, and Asia (especially India) and why research and publications are important in these regions. It addresses budding but struggling academics in low and middle-income countries. It is written mainly by senior colleagues who have experienced and recognized the challenges with design, documentation, and publication of health research in the developing world. The book includes short chapters providing insight into planning research at the undergraduate or postgraduate level, issues related to research ethics, and conduct of clinical trials. It also serves as a guide towards establishing a research question and research methodology. It covers important concepts such as writing a paper, the submission process, dealing with rejection and revisions, and covers additional topics such as planning lectures and presentations. The book will be useful for graduates, postgraduates, teachers as well as physicians and practitioners all over the developing world who are interested in academic medicine and wish to do medical research.
Book Synopsis Evaluating Human Genetic Diversity by : National Research Council
Download or read book Evaluating Human Genetic Diversity written by National Research Council and published by National Academies Press. This book was released on 1998-01-19 with total page 101 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.
Book Synopsis Big Data, Health Law, and Bioethics by : I. Glenn Cohen
Download or read book Big Data, Health Law, and Bioethics written by I. Glenn Cohen and published by Cambridge University Press. This book was released on 2018-03-08 with total page 374 pages. Available in PDF, EPUB and Kindle. Book excerpt: When data from all aspects of our lives can be relevant to our health - from our habits at the grocery store and our Google searches to our FitBit data and our medical records - can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? This timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.
Book Synopsis The Digital Person by : Daniel J Solove
Download or read book The Digital Person written by Daniel J Solove and published by NYU Press. This book was released on 2004 with total page 295 pages. Available in PDF, EPUB and Kindle. Book excerpt: Daniel Solove presents a startling revelation of how digital dossiers are created, usually without the knowledge of the subject, & argues that we must rethink our understanding of what privacy is & what it means in the digital age before addressing the need to reform the laws that regulate it.
