Download or read book Protecting Against Genetic Discrimination written by United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions and published by . This book was released on 2002 with total page 122 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 Privacy Issues in Biomedical and Clinical Research written by National Research Council and published by National Academies Press. This book was released on 1998-12-10 with total page 59 pages. Available in PDF, EPUB and Kindle. Book excerpt: After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.
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 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 Protecting Workers from Genetic Discrimination written by United States. Congress. House. Committee on Education and Labor. Subcommittee on Health, Employment, Labor, and Pensions and published by . This book was released on 2007 with total page 68 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 172 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 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.
Download or read book Genetic Discrimination written by Leana J. Albertson and published by Nova Publishers. This book was released on 2008 with total page 124 pages. Available in PDF, EPUB and Kindle. Book excerpt: Genetic information can be misused. It can be used to discriminate against people in health insurance and employment. People known to carry a gene that increases their likelihood of developing cancer, for example, may get turned down for health insurance. Without health insurance, it may be impossible for some people to get treatment for a disease that could be fatal. This may lead some people to decide against genetic testing for fear of what the results might show, and who might find out about them. It also could lead some people to decline participation in biomedical research such as studies of gene mutations associated with certain diseases that examine the history of families prone to those maladies. This new book examines some of the hot areas of research in the field.
Download or read book Section 1557 of the Affordable Care Act written by American Dental Association and published by American Dental Association. This book was released on 2017-05-24 with total page 10 pages. Available in PDF, EPUB and Kindle. Book excerpt: Section 1557 is the nondiscrimination provision of the Affordable Care Act (ACA). This brief guide explains Section 1557 in more detail and what your practice needs to do to meet the requirements of this federal law. Includes sample notices of nondiscrimination, as well as taglines translated for the top 15 languages by state.
Download or read book Dictionary of Global Bioethics written by Henk ten Have and published by Springer Nature. This book was released on 2021-05-26 with total page 1063 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Dictionary presents a broad range of topics relevant in present-day global bioethics. With more than 500 entries, this dictionary covers organizations working in the field of global bioethics, international documents concerning bioethics, personalities that have played a role in the development of global bioethics, as well as specific topics in the field.The book is not only useful for students and professionals in global health activities, but can also serve as a basic tool that explains relevant ethical notions and terms. The dictionary furthers the ideals of cosmopolitanism: solidarity, equality, respect for difference and concern with what human beings- and specifically patients - have in common, regardless of their backgrounds, hometowns, religions, gender, etc. Global problems such as pandemic diseases, disasters, lack of care and medication, homelessness and displacement call for global responses.This book demonstrates that a moral vision of global health is necessary and it helps to quickly understand the basic ideas of global bioethics.
Download or read book Fulfilling the Promise of Genetics Research written by United States. Congress. Senate. Committee on Health, Education, Labor, and Pensions and published by . This book was released on 2001 with total page 68 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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
Download or read book Genetic Information written by Nancy Lee Jones and published by Nova Publishers. This book was released on 2005 with total page 52 pages. Available in PDF, EPUB and Kindle. Book excerpt: On June 26, 2000, in a special ceremony at the White House, the completion of the 'rough draft' of the human genome was announced. This milestone, which has been compared to the discoveries of Galileo, and other advances in genetics have created novel legal issues relating to genetic information. The Human Genome Project, with its goal of producing detailed maps of the 23 pairs of human chromosomes and sequencing the three billion nucleotide bases that make up the human genome, has been instrumental in the identification of genes implicated in various diseases including glaucoma, colon cancer, and cystic fibrosis. With the identification of these genes comes the hope of genetic therapies to cure disease but this scientific accomplishment is not without potential problems. For instance the presence of a cancer causing gene may indicate a predisposition but does not guarantee that the person will contract the disease: How should an employer or insurer respond? The ethical, social, and legal implications of these technological advances have been the subject of significant scrutiny and concern. This new book discusses federal law, state statutes and legislation related to genetic information.
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 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 Data and the Law written by Mark Taylor and published by Cambridge University Press. This book was released on 2012-03-08 with total page 247 pages. Available in PDF, EPUB and Kindle. Book excerpt: Mark Taylor demonstrates how research using genetic data can be reconciled with proper privacy protection.