Genetic Privacy

Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Board on Biology
Publisher : National Academies Press
Page : 59 pages
File Size : 43,8 Mb
Release : 1998-12-10
Category : Medical
ISBN : 9780309063289

Get Book

Privacy Issues in Biomedical and Clinical Research by National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Board on Biology Pdf

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 : Graeme Laurie
Publisher : Cambridge University Press
Page : 363 pages
File Size : 50,7 Mb
Release : 2002-05-16
Category : Law
ISBN : 9781139431538

Get Book

Genetic Privacy by Graeme Laurie Pdf

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine.

Author : Institute of Medicine,Committee on Assessing Genetic Risks
Publisher : National Academies Press
Page : 353 pages
File Size : 53,8 Mb
Release : 1994-01-01
Category : Medical
ISBN : 9780309047982

Get Book

Assessing Genetic Risks by Institute of Medicine,Committee on Assessing Genetic Risks Pdf

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 : Mark A. Rothstein
Publisher : Yale University Press
Page : 532 pages
File Size : 50,8 Mb
Release : 1997-01-01
Category : Medical
ISBN : 0300080638

Get Book

Genetic Secrets by Mark A. Rothstein Pdf

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 : United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy
Publisher : Unknown
Page : 112 pages
File Size : 52,8 Mb
Release : 1998
Category : Law
ISBN : PSU:000032133899

Get Book

Privacy, Confidentiality and Discrimination in Genetics by United States. Congress. House. Committee on Commerce. Task Force on Health Records and Genetic Privacy Pdf

Author : Mark Taylor
Publisher : Cambridge University Press
Page : 247 pages
File Size : 45,7 Mb
Release : 2012-03-08
Category : Computers
ISBN : 9781107007116

Get Book

Genetic Data and the Law by Mark Taylor Pdf

Mark Taylor demonstrates how research using genetic data can be reconciled with proper privacy protection.

Author : Terry Sheung-Hung Kaan,Calvin Wai-Loon Ho
Publisher : World Scientific
Page : 412 pages
File Size : 42,7 Mb
Release : 2013-07-04
Category : Medical
ISBN : 9781783263073

Get Book

Genetic Privacy by Terry Sheung-Hung Kaan,Calvin Wai-Loon Ho Pdf

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 : Janneke H. Gerards,A. W. Heringa,Heleen L. Janssen
Publisher : Intersentia nv
Page : 254 pages
File Size : 47,6 Mb
Release : 2005
Category : Cross-cultural studies
ISBN : 9789050954525

Get Book

Genetic Discrimination and Genetic Privacy in a Comparative Perspective by Janneke H. Gerards,A. W. Heringa,Heleen L. Janssen Pdf

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 : Dara Hallinan
Publisher : Unknown
Page : 305 pages
File Size : 41,7 Mb
Release : 2021-03
Category : Electronic
ISBN : 9780192896476

Get Book

Protecting Genetic Privacy in Biobanking Through Data Protection Law by Dara Hallinan Pdf

Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.

Author : I. Glenn Cohen,Nita A. Farahany,Henry T. Greely,Carmel Shachar
Publisher : Cambridge University Press
Page : 303 pages
File Size : 40,5 Mb
Release : 2021-09-16
Category : Law
ISBN : 9781108836616

Get Book

Consumer Genetic Technologies by I. Glenn Cohen,Nita A. Farahany,Henry T. Greely,Carmel Shachar Pdf

Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.

Author : Ruth Chadwick,Mairi Levitt,Darren Shickle
Publisher : Cambridge University Press
Page : 231 pages
File Size : 46,9 Mb
Release : 2014-09-04
Category : Law
ISBN : 9781107076075

Get Book

The Right to Know and the Right Not to Know by Ruth Chadwick,Mairi Levitt,Darren Shickle Pdf

This book considers the right to know and the right not to know about your own and others' genomes, discussing new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity.

Author : National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law
Publisher : National Academies Press
Page : 106 pages
File Size : 50,8 Mb
Release : 2011-01-16
Category : Medical
ISBN : 9780309162166

Get Book

Direct-to-Consumer Genetic Testing by National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law Pdf

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.

Author : Privacy Commissioner of Canada
Publisher : Commissaire à la protection de la vie privée
Page : 256 pages
File Size : 44,7 Mb
Release : 1992
Category : Civil rights
ISBN : UIUC:30112001300224

Get Book

Dépistage Génétique Et la Vie Privée by Privacy Commissioner of Canada Pdf

This report gives a simplified description of the scientific fundamentals of genetic testing and describes its present applications; establishes broad privacy principles to guide both the public and private sectors on testing matters; examines specifically how the Privacy Act regulates genetic testing by government institutions; and addresses the growing need to consider regulating private sector genetic testing. A summary of positions taken by other countries and international organizations on privacy and genetic testing is also included.

Author : Akrivopoulou, Christina M.
Publisher : IGI Global
Page : 301 pages
File Size : 41,5 Mb
Release : 2015-02-28
Category : Science
ISBN : 9781466681545

Get Book

Protecting the Genetic Self from Biometric Threats: Autonomy, Identity, and Genetic Privacy by Akrivopoulou, Christina M. Pdf

Privacy is a fundamental concern of all individuals in the modern information-driven society, but information security goes beyond digital and data-oriented approaches to include the basic components of what makes us human. Protecting the Genetic Self from Biometric Threats: Autonomy, Identity, and Genetic Privacy considers all aspects of privacy and security relating to an individual’s DNA. With a concentration on fundamental human rights as well as specific cases and examples, this essential reference brings pertinent, real-world information to researchers, scientists, and advocates for greater security and privacy in the modern world.

Author : Sheldon Krimsky,Tania Simoncelli
Publisher : Columbia University Press
Page : 426 pages
File Size : 52,6 Mb
Release : 2012
Category : Law
ISBN : 9780231145213

Get Book

Genetic Justice by Sheldon Krimsky,Tania Simoncelli Pdf

Explores how the United States and other countries have balanced the use of DNA databanks in criminal justice with the privacy rights of their citizenry, arguing that collecting DNA from those who are arrested, but not charged, can infringe on their constitutional rights and debunking the myth that DNA profiling is infallible.