Assessing Genetic Risks

Assessing Genetic Risks PDF

Author: Institute of Medicine

Publisher: National Academies Press

Published: 1994-01-01

Total Pages: 353

ISBN-13: 0309047986

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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.

Genetic Secrets

Genetic Secrets PDF

Author: Mark A. Rothstein

Publisher: Yale University Press

Published: 1997-01-01

Total Pages: 532

ISBN-13: 9780300080636

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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.

Genetic Discrimination

Genetic Discrimination PDF

Author: Gerard Quinn

Publisher: Routledge

Published: 2014-11-20

Total Pages: 301

ISBN-13: 1135044619

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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.

Genetic Privacy: An Evaluation Of The Ethical And Legal Landscape

Genetic Privacy: An Evaluation Of The Ethical And Legal Landscape PDF

Author: Terry Sheung-hung Kaan

Publisher: World Scientific

Published: 2013-07-04

Total Pages: 412

ISBN-13: 1783263075

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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.

Genetic Testing and the Use of Information

Genetic Testing and the Use of Information PDF

Author: Clarisa Long

Publisher: American Enterprise Institute

Published: 1999

Total Pages: 168

ISBN-13: 9780844741093

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In this study, leading scholars confront the question: should individuals be allowed personal property rights to their DNA, cells, or tissues?

Genetic Discrimination and Genetic Privacy in a Comparative Perspective

Genetic Discrimination and Genetic Privacy in a Comparative Perspective PDF

Author: Janneke H. Gerards

Publisher: Intersentia nv

Published: 2005

Total Pages: 254

ISBN-13: 9050954529

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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.

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