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Privacy Confidentiality And Discrimination In Genetics
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Author :United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy Publisher : ISBN 13 : Total Pages :112 pages Book Rating :4.0/5 ( download)
Book Synopsis Privacy, Confidentiality and Discrimination in Genetics by : United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy
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 112 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 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 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 281 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 Genetic Privacy: An Evaluation Of The Ethical And Legal Landscape by : Terry Sheung-hung Kaan
Download or read book Genetic Privacy: An Evaluation Of The Ethical And Legal Landscape written by Terry Sheung-hung Kaan and published by World Scientific. This book was released on 2013-07-04 with total page 412 pages. Available in PDF, EPUB and Kindle. Book excerpt: Privacy is an unwieldy concept that has eluded an essentialised definition despite its centrality and importance in the body of bioethics. The compilation presented in this volume represents continuing discussions on the theme of privacy in the context of genetic information. It is intended to present a wide range of expert opinion in which the notion of privacy is examined from many perspectives, in different contexts and imperatives, and in different societies, with the hope of advancing an understanding of privacy through the examination and critique of some of its evolving component concepts such as notions of what constitute the personal, the context of privacy, the significance and impact of the relational interests of others who may share the same genetic inheritance, and mechanisms for the protection of privacy (as well as of their limitations), among others. More specifically, the discussions in this volume encourages us to think broadly about privacy, as encompassing values that are entailed in the sociality of context and of relations, and also as freedom from illegitimate and excessive surveillance. A long-standing question that continues to challenge us is whether genetic information should be regarded as exceptional, as it is often perceived. A conclusion that could be derived from this volume is that while genetic information may be significant, it is not exceptionally so. The work presented in this volume underlines the continuing and growing relevance of notions of privacy to genomic science, and the need to take ownership of a genetic privacy for the future through broad, rigorous and open discussion.Contributors: Alastair V Campbell, Benjamin Capps, Jacqueline JL Chin, Oi Lian Kon, Kenji Matsui, Thomas H Murray, Nazirudin Mohd Nasir, Dianne Nicol, Anh Tuan Nuyen, Onora O'Neill, Margaret Otlowski, Yvette van der Eijk, Chunshui Wang, Ross S White.
Book Synopsis Genetic Testing and the Use of Information by : Clarisa Long
Download or read book Genetic Testing and the Use of Information written by Clarisa Long and published by American Enterprise Institute. This book was released on 1999 with total page 168 pages. Available in PDF, EPUB and Kindle. Book excerpt: In this study, leading scholars confront the question: should individuals be allowed personal property rights to their DNA, cells, or tissues?
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 Policy Report by : Alissa Johnson
Download or read book Genetics Policy Report written by Alissa Johnson and published by . This book was released on 2002 with total page 68 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Privacy, Confidentiality & Discrimination In Genetics... 105-T... Committee On Commerce... U.S. House Of Reps... 105th Congress, 2nd Session, April 1998 by : United States. Congress. House. Committee on Commerce
Download or read book Privacy, Confidentiality & Discrimination In Genetics... 105-T... Committee On Commerce... U.S. House Of Reps... 105th Congress, 2nd Session, April 1998 written by United States. Congress. House. Committee on Commerce and published by . This book was released on 1998* with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis 105-2 Committee Print: Privacy, Confidentiality and Discrimination in Genetics, Committee Print 105-T, July 22, 1997, April 1998 by : United States. Congress. House. Committee on Commerce
Download or read book 105-2 Committee Print: Privacy, Confidentiality and Discrimination in Genetics, Committee Print 105-T, July 22, 1997, April 1998 written by United States. Congress. House. Committee on Commerce and published by . This book was released on 1998* with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Book Synopsis Conducting Biosocial Surveys by : National Research Council
Download or read book Conducting Biosocial Surveys written by National Research Council and published by National Academies Press. This book was released on 2010-10-02 with total page 124 pages. Available in PDF, EPUB and Kindle. Book excerpt: Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light. In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis-all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing. Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.
Book Synopsis Genetic Information by : Nancy Lee Jones
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.
Book Synopsis Privacy Issues in Biomedical and Clinical Research by : Board on Biology
Download or read book Privacy Issues in Biomedical and Clinical Research written by Board on Biology and published by National Academies Press. This book was released on 1998-11-24 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 The New Genetics: From Research into Health Care by : Irmgard Nippert
Download or read book The New Genetics: From Research into Health Care written by Irmgard Nippert and published by Springer Science & Business Media. This book was released on 1999-07-15 with total page 190 pages. Available in PDF, EPUB and Kindle. Book excerpt: The ultimate goals of human genome research are the treatment, cure and eventual prevention of genetic disorders but treatment and cure lag behind the ability to detect disease or increased suceptibility to disease. Most genetic services today deliver diagnosis and counseling, effective treatment is rare. As more genes are identified there is growing pressure to implement new testing programs or broaden existing programs and otherwise increase both the number of available genetic tests and the amount of genetic information. The main issues concerned among others are: voluntariness of services, freedom of choices, patient autonomy, informed consent, confidentiality of genetic information, privacy, testing of minors, social discrimination and stigmatization.
Book Synopsis Genetic Discrimination by : Leana J. Albertson
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.
Book Synopsis The Right to Know and the Right Not to Know by : Ruth Chadwick
Download or read book The Right to Know and the Right Not to Know written by Ruth Chadwick and published by Cambridge University Press. This book was released on 2014-09-04 with total page 231 pages. Available in PDF, EPUB and Kindle. Book excerpt: The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others' genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media.
Book Synopsis DNA Technology in Forensic Science by : National Research Council
Download or read book DNA Technology in Forensic Science written by National Research Council and published by National Academies Press. This book was released on 1992-02-01 with total page 199 pages. Available in PDF, EPUB and Kindle. Book excerpt: Matching DNA samples from crime scenes and suspects is rapidly becoming a key source of evidence for use in our justice system. DNA Technology in Forensic Science offers recommendations for resolving crucial questions that are emerging as DNA typing becomes more widespread. The volume addresses key issues: Quality and reliability in DNA typing, including the introduction of new technologies, problems of standardization, and approaches to certification. DNA typing in the courtroom, including issues of population genetics, levels of understanding among judges and juries, and admissibility. Societal issues, such as privacy of DNA data, storage of samples and data, and the rights of defendants to quality testing technology. Combining this original volume with the new update-The Evaluation of Forensic DNA Evidence-provides the complete, up-to-date picture of this highly important and visible topic. This volume offers important guidance to anyone working with this emerging law enforcement tool: policymakers, specialists in criminal law, forensic scientists, geneticists, researchers, faculty, and students.
