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Perspectives On Genetic Discrimination
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Book Synopsis Perspectives on Genetic Discrimination by : Thomas Lemke
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.
Book Synopsis Perspectives on Genetic Discrimination by : Thomas Lemke
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.
Book Synopsis Genetic Discrimination by : Gerard Quinn
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 282 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.
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.
Book Synopsis Genetic Discrimination and Genetic Privacy in a Comparative Perspective by : Janneke H. Gerards
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.
Book Synopsis Genetics and Ethics in Global Perspective by : Dorothy C. Wertz
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 2004-11-04 with total page 494 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.
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 Privacy Issues in Biomedical and Clinical Research by : National Research Council
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.
Book Synopsis Disability, Difference, Discrimination by : Anita Silvers
Download or read book Disability, Difference, Discrimination written by Anita Silvers and published by Rowman & Littlefield. This book was released on 1998 with total page 358 pages. Available in PDF, EPUB and Kindle. Book excerpt: How should we respond to individuals with disabilities? What does it mean to be disabled? Over fifty million Americans, from neonates to the fragile elderly, are disabled. Some people say they have the right to full social participation, while others repudiate such claims as delusive or dangerous. In this compelling book, three experts in ethics, medicine, and the law address pressing disability questions in bioethics and public policy. Anita Silvers, David Wasserman, and Mary B. Mahowald test important theories of justice by bringing them to bear on subjects of concern in a wide variety of disciplines dealing with disability. They do so in the light of recent advances in feminist, minority, and cultural studies, and of the groundbreaking Americans with Disabilities Act. Visit our website for sample chapters!
Book Synopsis Contemporary Bioethics by : Mohammed Ali Al-Bar
Download or read book Contemporary Bioethics written by Mohammed Ali Al-Bar and published by Springer. This book was released on 2015-05-27 with total page 267 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book discusses the common principles of morality and ethics derived from divinely endowed intuitive reason through the creation of al-fitr' a (nature) and human intellect (al-‘aql). Biomedical topics are presented and ethical issues related to topics such as genetic testing, assisted reproduction and organ transplantation are discussed. Whereas these natural sources are God’s special gifts to human beings, God’s revelation as given to the prophets is the supernatural source of divine guidance through which human communities have been guided at all times through history. The second part of the book concentrates on the objectives of Islamic religious practice – the maqa' sid – which include: Preservation of Faith, Preservation of Life, Preservation of Mind (intellect and reason), Preservation of Progeny (al-nasl) and Preservation of Property. Lastly, the third part of the book discusses selected topical issues, including abortion, assisted reproduction devices, genetics, organ transplantation, brain death and end-of-life aspects. For each topic, the current medical evidence is followed by a detailed discussion of the ethical issues involved.
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.
Author :Royal Society of Canada. Symposium Publisher :McGill-Queen's Press - MQUP ISBN 13 :0773537805 Total Pages :341 pages Book Rating :4.7/5 (735 download)
Book Synopsis Challenging Genetic Determinism by : Royal Society of Canada. Symposium
Download or read book Challenging Genetic Determinism written by Royal Society of Canada. Symposium and published by McGill-Queen's Press - MQUP. This book was released on 2011 with total page 341 pages. Available in PDF, EPUB and Kindle. Book excerpt: Compelling essays on understanding the interplay of genes in society.
Book Synopsis Understanding Racial and Ethnic Differences in Health in Late Life by : National Research Council
Download or read book Understanding Racial and Ethnic Differences in Health in Late Life written by National Research Council and published by National Academies Press. This book was released on 2004-09-08 with total page 184 pages. Available in PDF, EPUB and Kindle. Book excerpt: As the population of older Americans grows, it is becoming more racially and ethnically diverse. Differences in health by racial and ethnic status could be increasingly consequential for health policy and programs. Such differences are not simply a matter of education or ability to pay for health care. For instance, Asian Americans and Hispanics appear to be in better health, on a number of indicators, than White Americans, despite, on average, lower socioeconomic status. The reasons are complex, including possible roles for such factors as selective migration, risk behaviors, exposure to various stressors, patient attitudes, and geographic variation in health care. This volume, produced by a multidisciplinary panel, considers such possible explanations for racial and ethnic health differentials within an integrated framework. It provides a concise summary of available research and lays out a research agenda to address the many uncertainties in current knowledge. It recommends, for instance, looking at health differentials across the life course and deciphering the links between factors presumably producing differentials and biopsychosocial mechanisms that lead to impaired health.
Book Synopsis Cells and Surveys by : National Research Council
Download or read book Cells and Surveys written by National Research Council and published by National Academies Press. This book was released on 2001-01-19 with total page 388 pages. Available in PDF, EPUB and Kindle. Book excerpt: What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.
Book Synopsis Genetics and Ethics in Global Perspective by : Dorothy C. Wertz
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 474 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.
Book Synopsis Genetic Data and the Law by : Mark Taylor
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.
Book Synopsis The Immortal Life of Henrietta Lacks by : Rebecca Skloot
Download or read book The Immortal Life of Henrietta Lacks written by Rebecca Skloot and published by Crown. This book was released on 2010-02-02 with total page 386 pages. Available in PDF, EPUB and Kindle. Book excerpt: #1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
