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Author : United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy
Publisher : Unknown
Page : 112 pages
File Size : 41,6 Mb
Release : 1998
Category : Law
ISBN : PSU:000032133899
Author : Gerard Quinn,Aisling de Paor,Peter Blanck
Publisher : Routledge
Page : 281 pages
File Size : 41,9 Mb
Release : 2014-11-20
Category : Law
ISBN : 9781135044602
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 : Mark A. Rothstein
Publisher : Yale University Press
Page : 532 pages
File Size : 40,8 Mb
Release : 1997-01-01
Category : Medical
ISBN : 0300080638
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.
Author : Janneke H. Gerards,A. W. Heringa,Heleen L. Janssen
Publisher : Intersentia nv
Page : 254 pages
File Size : 53,6 Mb
Release : 2005
Category : Cross-cultural studies
ISBN : 9789050954525
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 : Terry Sheung-Hung Kaan,Calvin Wai-Loon Ho
Publisher : World Scientific
Page : 412 pages
File Size : 46,5 Mb
Release : 2013-07-04
Category : Medical
ISBN : 9781783263073
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. Contents:The Notion of Genetic Privacy (Calvin WL Ho and Terry SH Kaan)Can Data Protection Secure Personal Privacy? (Onora O'Neill)Navigating the Privacy Complex of Self, Other and Relationality (Calvin WL Ho)Privacy and Biomedical Research: A Role-based Approach (Anh Tuan Nuyen)Socio-political Discourses on Genetic Privacy in Japan (Kenji Matsui)Genetic Privacy: A Challenge to Genetic Testing in China (Chunshui Wang)Don't Ask, Don't Tell: Exploring the Limits of Genetic Privacy in Singapore (Terry SH Kaan)Privacy, Rights and Biomedical Data Collections (Benjamin Capps)Individual Right vs. Public Interest: The Role of the Islamic Religious Council of Singapore in Bioethics Consultation on Genetic Privacy (Nazirudin M Nasir)What — If Anything — Is Special about “Genetic Privacy”? (Jacqueline JL Chin and Alastair V Campbell)Genetic Privacy in the United States: Genetic Exceptionalism, GINA, and the Future of Genetic Testing (Thomas H Murray and Ross S White)The Regulatory Framework for Protection of Genetic Privacy in Australia (Margaret Otlowski and Diane Nicol)Privacy Matters in Nicotine Addiction (Yvette van der Eijk)Human Genomics and Privacy (Oi Lian Kon) Readership: Students and professionals in medical law and medical ethics, public policy, Asian studies and public health. Keywords:Bioethics;Biotechnology;Genetics;Policy;Public;Trust;Regulation of Research;Singapore;Privacy
Author : Institute of Medicine,Committee on Assessing Genetic Risks
Publisher : National Academies Press
Page : 353 pages
File Size : 44,8 Mb
Release : 1994-01-01
Category : Medical
ISBN : 9780309047982
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 : Alissa Johnson,Cheye Calvo
Publisher : Unknown
Page : 68 pages
File Size : 47,5 Mb
Release : 2002
Category : Human genetics
ISBN : CORNELL:31924089573590
Author : Clarisa Long
Publisher : American Enterprise Institute
Page : 168 pages
File Size : 42,5 Mb
Release : 1999
Category : Law
ISBN : 0844741094
In this study, leading scholars confront the question: should individuals be allowed personal property rights to their DNA, cells, or tissues?
Author : Lara Khoury,Adelle Blackett,Lukas Vanhonnaeker
Publisher : Springer Nature
Page : 354 pages
File Size : 41,8 Mb
Release : 2020-10-01
Category : Law
ISBN : 9783030436995
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 : Board on Biology,Commission on Life Sciences,Division on Earth and Life Studies,National Research Council
Publisher : National Academies Press
Page : 59 pages
File Size : 42,7 Mb
Release : 1998-11-24
Category : Medical
ISBN : 9780309520966
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.
Author : Irmgard Nippert,Heidemarie Neitzel,Gerhard Wolff
Publisher : Springer Science & Business Media
Page : 190 pages
File Size : 52,9 Mb
Release : 1999-07-15
Category : Medical
ISBN : 354065920X
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.
Author : National Research Council,Commission on Behavioral and Social Sciences and Education,Committee on Population
Publisher : National Academies Press
Page : 388 pages
File Size : 41,5 Mb
Release : 2001-01-19
Category : Social Science
ISBN : 9780309171434
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.
Author : National Research Council,Division of Behavioral and Social Sciences and Education,Committee on Population,Committee on National Statistics,Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys
Publisher : National Academies Press
Page : 124 pages
File Size : 53,7 Mb
Release : 2010-10-02
Category : Computers
ISBN : 9780309157063
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.
Author : Michela Betta
Publisher : Springer Science & Business Media
Page : 296 pages
File Size : 49,9 Mb
Release : 2006-07-14
Category : Law
ISBN : IND:30000121275436
This is a dynamic book that successfully combines global and local thinking with regard to an emerging technology that will contribute to the expansion of proteomics and pharmacogenomics, the science of tailored healthcare and treatments. Genetic testing and screening will change the way people understand health, diagnostic knowledge, illness but also crime, databases and private information, paternity, and self-knowledge. In addition to giving individuals the opportunity to think differently about their well-being, it installs a new taxonomy in terms of illness, because its probabilistic effects will introduce a new narrative in the health discourse of 21st century society. While in the past people could be classified as being healthy or sick, now, through genetic testing and screening, adults can be classified as being healthy, predisposed to an illness, probably at risk, at risk, or carriers of certain risks. The effects of this taxonomy do not remain confined to the individual who is tested but extends to an entire family, as genetic knowledge is family knowledge. But the technology of genetic testing and screening installs a second dramatic register in the prenatal phase when cells and embryos are tested and subsequently altered in order to hit targets of perfection. However, this technology can also be seen as a strategy for the acquisition of new knowledge about oneself, as it instigates a different attitude towards ourselves in a scenario in which the notion of life as a singular noun is seriously questioned by cultural practices that make it necessary to speak of forms of life. The complexity of the Self resulting from this epistemological shift evoke the ancient Greco-roman practices of the care of the self leading to self-knowledge. Genetic testing and screening could therefore be understood as a form of self-quest, and attempt to discover what we are beyond our wishes and desires - beyond what we would like to be.
Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity
Publisher : National Academies Press
Page : 101 pages
File Size : 45,5 Mb
Release : 1998-01-19
Category : Science
ISBN : 9780309184748
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.