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.
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.
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
The first decade of the new millennium has been an exciting time for the family historian. The increasing availability of online resources has transformed the genealogical research process. DNA testing and the new generation of social networking websites have developed in parallel and are becoming increasingly useful tools. DNA testing can now be used to prove or disprove genealogical connections and will put you in touch with your genetic cousins around the world. It can also take you back beyond the paper trail into your pre-surname history. Social networking tools can help you to find and stay in touch with friends and relatives, and provide new ways to share and collaborate with other researchers. This book looks at all the latest advances in DNA testing from the Y-chromosome tests used in surname projects through to the latest autosomal DNA tests. Debbie Kennett explores the use of new social media, including Facebook, Twitter, blogs and wikis, along with more traditional networking methods. DNA and Social Networking is an indispensable guide to the use of twenty-first-century technology in family history research.
DNA testing is now being used by thousands of genealogists around the world. DNA and Family History is the first guide to this pioneering subject, designed for family historians and surname study organizers at any stage in their research. In simple language aimed at non-scientists, Chris Pomery examines the background and the issues.
Based on research by leading medical anthropologists from around the world, this book examines such issues as local practices detrimental to safe pregnancy and birth; conflicting reproductive goals between women and men; and miscommunications between pregnant women and their genetic counselors.
Genetics and Genomics in Medicine is a new textbook written for undergraduate students, graduate students, and medical researchers that explains the science behind the uses of genetics and genomics in medicine today. Rather than focusing narrowly on rare inherited and chromosomal disorders, it is a comprehensive and integrated account of how geneti
This report presents the results of a survey of over 800 genetic testing laboratory directors in 18 OECD countries. It provides the first detailed overview of the availability and extent of molecular genetic testing across OECD member countries.
