Genetic Testing Policy Issues for the New Millennium

Genetic Testing Policy Issues for the New Millennium
Author: OECD
Publisher: OECD Publishing
Total Pages: 79
Release: 2001-01-11
Genre:
ISBN: 9264188576

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This report provides a state-of-the art review of advances in genetic testing and of main international policy concerns drawing from the OECD workshop on "Genetic Testing: Policy Issues for the New Millennium", held in Vienna on 23-25 February 2000.

Genetics Testing in the New Millennium

Genetics Testing in the New Millennium
Author: Constance A. Morella
Publisher: DIANE Publishing
Total Pages: 126
Release: 2001
Genre:
ISBN: 0756705487

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Hearing held by the Subcommittee on Technology. Witnesses include: Raymond G. Kammer, Director, National Institute of Standards and Technology; Dr. Francis S. Collins, Director, National Human Genome Research Institute, National Institutes of Health; Dr. William F. Raub, Deputy Assistant Secretary of Science Policy, Department of Health and Human Services (HHS); and Dr. Michael Watson, Professor of Pediatrics and Genetics, Washington University School of Medicine, Co-Chair, NIH-DoE Task Force of Genetics Testing.

Genetic Testing

Genetic Testing
Author: Amanda K. Sarata
Publisher:
Total Pages: 0
Release: 2015
Genre:
ISBN:

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Quality Issues in Clinical Genetic Services

Quality Issues in Clinical Genetic Services
Author: Ulf Kristoffersson
Publisher: Springer Science & Business Media
Total Pages: 400
Release: 2010-06-25
Genre: Medical
ISBN: 9048139198

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Initially genetic disorders were all considered as rare diseases. At present, in the mid of 2009, the OMIM catalogue contains information on more than 12 000 entries of which about 2500 are available for clinical testing based on the identification of the responsible gene defect. However, altogether it has been estimated that about 8 percent of a population in the economically developed countries will during their lifetime suffer from a disease mainly as the result of their genetic constitution. Adding to that, it is estimated that all diseases have a genetic component, which will determine who will be at a higher than average risk for a certain disorder. Further it is postulated that in the near future, this genetic profiling could become useful in selecting an appropriate therapy adapted to the genetic constitution of the person. Thus, genetic disorders are not rare. Measuring quality of health care related processes became an issue in the 1990s, mainly in laboratory medicine, but also for hospitals and other health care systems. In many countries national authorities started to implement recommendations, guidelines or legal procedures regulating quality of health care delivery. In laboratory medicine, in parallel, the use of accreditation as a method assuring high quality standards in testing came in use. With the increasing possibilities of performing molecular genetic testing, genetic laboratories needed to become involved in this process. As many genetic disorders are rare, most laboratories worldwide offered analysis for a specific set of disorders, and, therefore, very early on a transborder flow of samples occurred. While international quality criteria (ISO) have been in existence for a number of years, the regulation of quality issues still may differ between countries. Based on their personal experience in the varying fields of quality research and clinical implementation of quality criteria in genetic services the authors of this book share their experience and give examples of the implementation of quality issues in national quality systems worldwide. This book, which is the result of the effort of many persons, is destined to aid laboratory managers and counsellors, health care managers and other stakeholders in national or international health care service to improve the services to the benefit of patients with suspected genetic disorders.

Genetics, Health Care and Public Policy

Genetics, Health Care and Public Policy
Author: Alison Stewart
Publisher: Cambridge University Press
Total Pages: 291
Release: 2007-05-17
Genre: Medical
ISBN: 1139463292

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Genetics, Health Care and Public Policy is an introduction to the new discipline of public health genetics. It brings together the insights of genetic and molecular science as a means of protecting and improving the health of the population. Its scope is wide and requires an understanding of genetics, epidemiology, public health and the principles of ethics, law and the social sciences. This book sets out the basic principles of public health genetics for a wide audience from those providing health care to those involved in establishing policy. The emphasis throughout the text is on providing an accessible introduction to the field. The content moves from the basic concepts, including definitions and history, through chapters on genetics, genetic technology, epidemiology, genetics in medicine, genetics in health services, ethical, legal and social implications, to the implications for health policy. It provides one-stop, introductory coverage of this rapidly developing and multidisciplinary field.

Am I My Genes?

Am I My Genes?
Author: Robert L. Klitzman M.D.
Publisher: Oxford University Press
Total Pages: 376
Release: 2012-03-01
Genre: Medical
ISBN: 0190207671

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In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center