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To date, no central database captures information about stored tissue samples. This handbook serves as a national resource, to bring together for the first time, in a single document, information about tissue storage in the United States. It provides information about several aspects of stored tissue samples, such as how many samples exist in the United States, where they are, who has access to them, and for what purposes they are used. A conservative estimate from the tissue collections described in this book is that more than 307 million specimens from more than 178 million cases are stored in the United States, accumulating at a rate of more than 20 million per year. This handbook will be a valuable resource for researchers who require tissue samples for studies in genetics, cancer, immunology, physiology, and cell biology, among many other disciplines. In addition, it should be useful to policymakers, physicians, and other professionals in fields realated to health care.
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One aspect of the recent and rapid advances in biological and medical research is that human tissue is being used in an increasing variety of new ways. Now that techniques exist to extract DNA from minuscule archival samples, including frozen blood or tissue samples and even paraffin-embedded tissue blocks, genetic tests could potentially be performed on virtually any size stored tissue sample. These technological advances, which have been so instrumental in recent biomedical discoveries, have also raised several legal, ethical, and societal issues, including concerns about privacy and informed consent.To assist in their examination of the issues associated with the use of stored tissue samples, the National Bioethics Advisory Commission (NBAC) requested information about the magnitude of the existing archives of tissues in the United States from the Science and Technology Policy Institute at RAND. The commissioned report represented the first inventory of stored tissue sample repositories in the United States. The report provided information about major tissue storage facilities and information about several aspects of stored tissue samples, such as how many tissue samples exist in the United States, where they are, who has access to them, and for what purposes they are used. This handbook is an extension of the NBAC-commissioned report and represents a comprehensive inventory of stored human biological materials in the United States. The handbook is the first of its kind and should be extremely useful to scientific researchers throughout the world.Originally created by Congress in 1991 as the Critical Technologies Institute and renamed in 1998, the Science and Technology Policy Institute is a federally funded research and development center sponsored by the National Science Foundation and managed by RAND. The institute's mission is to help improve public policy by conducting objective, independent research and analysis on policy issues that involve science and technology. To this end, the institute Supports the Office of Science and Technology Policy and other Executive Branch agencies, offices, and councils Helps science and technology decisionmakers understand the likely consequences of their decisions and choose among alternative policies Helps improve understanding in both the public and private sectors of theways in which science and technology can better serve national objectives.Science and Technology Policy Institute research focuses on problems of science and technology policy that involve multiple agencies. In carrying out its mission, the institute consults broadly with representatives from private industry, institutions of higher education, and other nonprofit institutions.Inquiries regarding the Science and Technology Policy Institute or this documentmay be directed to:Bruce Don, Ph.D.Director, Science and Technology Policy InstituteRAND1333 H Street, N.W.Washington, D.C.About the Author:
Elisa Eiseman (Ph.D., Human Genetics from the Medical College of Virginia, Virginia Commonwealth University) is a researcher at the Rand Science and Technology Policy Institute (S&TPI) whose policy interests include the areas of biotechnology, biomedicine and bioethics.
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