Download or read book Genetic Discrimination and Genetic Privacy in a Comparative Perspective written by Janneke H. Gerards and published by Intersentia nv. This book was released on 2005 with total page 254 pages. Available in PDF, EPUB and Kindle. Book excerpt: During the last decades, a better understanding of the influence of genetic factors on the onset of illness and disease has evolved. Unfortunately, however, the information revealed by genetic tests is not always accurate and reliable and its probabilistic value is often limited. Throughout the world, the possibility of genetic testing and the availability of individual genetic information have therefore caused increasing social concern, especially since many actors outside the medical profession, such as health and life insurance companies and employers, have shown a growing interest in individual genetic information. In many states, as well as on the international level, there is an ongoing debate about the balance that should be struck between the protection of the individual against misuse of genetic information and the interests of social actors and genetic research institutes, and about the policy options that are at hand to reduce the risks that are created by the availability of genetic information. This book offers some clarity as to the choices that have been made in various legal systems, both national and international, with respect to the regulation of genetic information. On the basis of an elaborate analysis of relevant legislation, policy approaches and case-law in the United States, the various European states and on the international level, the book aims to provide insight in the issues that must be deemed relevant in considering and, eventually, introducing regulative measures with respect to genetic information.
Download or read book Privacy Confidentiality and Discrimination in Genetics written by United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy and published by . This book was released on 1998 with total page 120 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 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.
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.
Download or read book Genetic Discrimination written by Gerard Quinn and published by Routledge. This book was released on 2014-11-20 with total page 301 pages. Available in PDF, EPUB and Kindle. Book excerpt: As genetic technologies advance, genetic testing may well offer the prospect of detecting the onset of future disabilities. Some research also forwards that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed, or the propensity for risk-taking. As this technology becomes more prevalent, there is a danger that genetic information may be misused by third parties and that particular genetic profiles may be discriminated against by employers, by providers of social goods and services, such as insurance companies and even by educational facilities. This book explores the different forms and potential uses of genetic testing. Drawing together leading experts in disability law, bioethics, health law and a range of related fields, it highlights the ethical and legal challenges arising as a result of emerging and rapidly advancing genetic science. On examining transatlantic perspectives on the matter, chapters in the book ask whether the US Genetic Information Nondiscrimination Act (GINA) is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating fears of discrimination. The book also reviews what insights may be gained from GINA within employment and health insurance contexts, and asks how the UN Convention on the Rights of Persons with Disabilities (CRPD) may impact similar debates within the European Union. The book focuses particularly on the legislative and policy framework in the European Union, with an emphasis on the gaps in protection and the scope for specific legislative action in this area. This book will be of great interest to scholars and students of discrimination law, bioethics and disability law, and will be of considerable use to legal practitioners, medical practitioners and policy-makers in this area.
Download or read book Genetic Testing and the Governance of Risk in the Contemporary Economy written by Lara Khoury and published by Springer Nature. This book was released on 2020-10-01 with total page 354 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.
Download or read book Genetics Disability and the Law written by Aisling de Paor and published by Cambridge University Press. This book was released on 2017-09-21 with total page 335 pages. Available in PDF, EPUB and Kindle. Book excerpt: With genetic technologies advancing rapidly, Aisling de Paor examines the urgent need for an EU-level framework to regulate genetic information.
Download or read book Protecting Genetic Privacy in Biobanking through Data Protection Law written by Dara Hallinan and published by Oxford University Press. This book was released on 2021-03-11 with total page 305 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biobanks are critical infrastructure for medical research but they are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25th May 2018 the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking in Europe. Hallinan argues that the substantive framework presented by the GDPR already offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking. The book further argues that, whilst numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.
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.
Download or read book Genetics and Ethics in Global Perspective written by Dorothy C. Wertz and published by Springer Science & Business Media. This book was released on 2012-12-06 with total page 479 pages. Available in PDF, EPUB and Kindle. Book excerpt: Dorothy Wertz and John Fletcher pioneered the first international study of ethical and social issues in genetics in 18 nations. This book reports and discusses their second and more representative study in 36 nations. The survey focused on actual situations that occur in the practice of medical genetics, presented as case vignettes that can also be used in teaching and policy discussion. Among the issues discussed are privacy, prenatal diagnosis, patient autonomy, directiveness in counseling, sex selection, forensic DNA banking, "genetic discrimination," and "eugenics". This is Dorothy Wertz's final book, as she died in April, 2003. It is a one of a kind cross-cultural study of complex ethical issues in the uses of genetic information. No one else has attempted to look at the international aspects of medical genetics on such a broad scale. The results provide a resource for discussion both within and among nations. Much bioethical and policy discussion now occurs in an information vacuum. The survey showed that what people would do, and their reasons for doing it, differed considerably from what ethicists think they "should" do. Many will be surprised at the results, especially in nations where bioethical discussion is just beginning. Genetics and Ethics in Global Perspective is of interest to medical geneticists, genetic counselors, social scientists and anthropologists who study cross-cultural issues, bioethicists and bioethics centers and health policy makers.
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 Good Data written by Angela Daly and published by Lulu.com. This book was released on 2019-01-23 with total page 372 pages. Available in PDF, EPUB and Kindle. Book excerpt: Moving away from the strong body of critique of pervasive ?bad data? practices by both governments and private actors in the globalized digital economy, this book aims to paint an alternative, more optimistic but still pragmatic picture of the datafied future. The authors examine and propose ?good data? practices, values and principles from an interdisciplinary, international perspective. From ideas of data sovereignty and justice, to manifestos for change and calls for activism, this collection opens a multifaceted conversation on the kinds of futures we want to see, and presents concrete steps on how we can start realizing good data in practice.
Download or read book Routledge Handbook of Disability Law and Human Rights written by Peter Blanck and published by Routledge. This book was released on 2016-07-07 with total page 280 pages. Available in PDF, EPUB and Kindle. Book excerpt: This handbook provides a comprehensive and authoritative state-of-the-art review of the current and emerging research and policy on disability law. Bringing together a team of respected and experienced experts, the handbook offers a range of jurisdictional and multidisciplinary perspectives. The authors consider historical and contemporary, as well as comparative perspectives of disability law. Divided into three parts, the contributors provide a comprehensive reference to the theoretical underpinnings, ongoing debates and emerging fields within the subject. The study provides a strong basis for consideration of contemporary disability law, its research foundations, and progressive developments in the area. The book incorporates interdisciplinary and comparative country perspectives to capture the breadth of current discourse on disability law. This handbook provides a valuable resource for a wide range of scholars, public and private researchers, NGOs, and practitioners working in the area of disability law, and across national and transnational disability schemes. The work will be of important interest to those in the fields of sociology, history, psychology, economics, political science, rehabilitation sciences, medicine, technology, and law, among others.
Download or read book Perspectives on Genetic Discrimination written by Thomas Lemke and published by Routledge. This book was released on 2013-07-18 with total page 185 pages. Available in PDF, EPUB and Kindle. Book excerpt: Over the past 15 years, a series of empirical studies in different countries have shown that our increasing genetic knowledge leads to new forms of exclusion, disadvantaging and stigmatization. The spectrum of this "genetic discrimination" ranges from disadvantages at work, via problems with insurance policies, to difficulties with adoption agencies. The empirical studies on the problem of genetic discrimination have not gone unnoticed. Since the beginning of the 1990s, a series of legislative initiatives and statements, both on the national level and on the part of international and supranational organizations and commissions, have been put forward as ways of protecting people from genetic discrimination. This is the first book to critically evaluate the empirical evidence and the theoretical usefulness of the concept of "genetic discrimination." It discusses the advantages and limitations of adopting the concept, and offers a more complex account distinguishing between several dimensions and forms of genetic discrimination.
Download or read book An Introduction to Ethical Safety and Intellectual Property Rights Issues in Biotechnology written by Padma Nambisan and published by Academic Press. This book was released on 2017-06-21 with total page 392 pages. Available in PDF, EPUB and Kindle. Book excerpt: An Introduction to Ethical, Safety and Intellectual Property Rights Issues in Biotechnology provides a comprehensive look at the biggest technologies that have revolutionized biology since the early 20th century, also discussing their impact on society. The book focuses on issues related to bioethics, biosafety and intellectual property rights, and is written in an easy-to-understand manner for graduate students and early career researchers interested in the opportunities and challenges associated with advances in biotechnology. Important topics covered include the Human Genome Project, human cloning, rDNA technology, the 3Rs and animal welfare, bioterrorism, human rights and genetic discrimination, good laboratory practices, good manufacturing practices, the protection of biological material and much more. Full of relevant case studies, practical examples, weblinks and resources for further reading, this book offers an essential and holistic look at the ways in which biotechnology has affected our global society. Provides a comprehensive look at the ethical, legal and social implications of biotechnology Discusses the global efforts made to resolve issues Incorporates numerous case studies to more clearly convey concepts and chart the development of guidelines and legislation regulating issues in biotechnology Takes a straightforward approach to highlight and discuss both the benefits and risks associated with the latest biotechnologies
Download or read book Pediatric Epidemiology written by W. Kiess and published by Karger Medical and Scientific Publishers. This book was released on 2017-11-27 with total page 156 pages. Available in PDF, EPUB and Kindle. Book excerpt: Pediatric epidemiology differs substantially from general epidemiology especially when it comes to ethical, developmental and societal aspects. This unique book addresses biological considerations and ethical and legal questions in dealing with pediatric and adolescent populations. Classic topics, such as how to recruit representative samples, how to deal with confounding variables, and how to work with genetic information are the core areas of the book are also in focus. Last but not the least, this volume adds to the current understanding of global trends in occurrence, transmission, and control of epidemic pediatric diseases. This book not only serves as a textbook for epidemiologists, pediatricians, geneticists, and child and public health specialists but is also a key reference for those embarking on pediatric cohort studies and epidemiological studies involving the pediatric population.
