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Author: Janneke H. Gerards Publisher: Intersentia nv ISBN: 9050954529 Category : Cross-cultural studies Languages : en Pages : 254
Book Description
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.
Author: Janneke H. Gerards Publisher: Intersentia nv ISBN: 9050954529 Category : Cross-cultural studies Languages : en Pages : 254
Book Description
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.
Author: United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy Publisher: ISBN: Category : Law Languages : en Pages : 120
Author: Institute of Medicine Publisher: National Academies Press ISBN: 0309047986 Category : Medical Languages : en Pages : 353
Book Description
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: National Research Council Publisher: National Academies Press ISBN: 0309162165 Category : Medical Languages : en Pages : 106
Book Description
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.
Author: Mark A. Rothstein Publisher: MIT Press ISBN: 9780262182362 Category : Business & Economics Languages : en Pages : 320
Book Description
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.
Author: Lara Khoury Publisher: Springer Nature ISBN: 3030436993 Category : Law Languages : en Pages : 354
Book Description
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.
Author: Gerard Quinn Publisher: Routledge ISBN: 1135044619 Category : Law Languages : en Pages : 301
Book Description
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.
Author: Aisling de Paor Publisher: Cambridge University Press ISBN: 1107127572 Category : Law Languages : en Pages : 335
Book Description
With genetic technologies advancing rapidly, Aisling de Paor examines the urgent need for an EU-level framework to regulate genetic information.
Author: Dara Hallinan Publisher: Oxford University Press ISBN: 0192650394 Category : Law Languages : en Pages : 305
Book Description
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.
Author: Dorothy C. Wertz Publisher: Springer Science & Business Media ISBN: 9400709811 Category : Medical Languages : en Pages : 479
Book Description
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.
Author: Janneke H. Gerards
Author: Janneke H. Gerards
Author: United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy
Author: Institute of Medicine
Author: National Research Council
Author: Mark A. Rothstein
Author: Lara Khoury
Author: Gerard Quinn
Author: Aisling de Paor
Author: Dara Hallinan
Author: Dorothy C. Wertz