What if your father had Alzheimer's disease? And what if there was a test to tell you if, as you grew older, you might develop it, too? Would you have the test? And if you did, how would the results affect the way you live your life? How would they affect your family? Your job? Your medical insurance?
Breast cancer, sickle-cell anemia, Huntington disease, muscular dystrophy--every day, people have to face the fact that a hereditary disorder runs in their family. The painful knowledge that they or their children might be at risk for a genetic disorder influences all their decisions about the future. They ask, "Is there a genetic test to let us know if we are really at risk? If there is such a test, do we really want to have it done?"
For an ever-growing number of disorders, testing is possible--but the existence of a test can raise new and troubling questions. In this book, geneticist and science policy expert Doris Teichler Zallen explains clearly and sympathetically how genetic disorders are passed along in families; which hereditary disorders can be tested for using genetic technology; how the new DNA tests for genetic disorders work; what genetic tests can and can't reveal, and why the tests often do not give clear-cut answers; what questions one should ask doctors and genetic counselors; how the health care system, government policies, and insurance companies influence our options; and what the resources are for obtaining more information and counseling.
Through the stories of real families and the choices they made about genetic testing, Zallen helps readers think through their own alternatives and discuss them with relatives. Does it Run in the Family? is essential reading for every family coping with inherited medical conditions and for the medical and genetics professionals involved in their decisions. It will also interest all readers who seek a clear explanation of the new DNA tests and the issues surrounding them.
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DORIS TEICHLER ZALLEN is a professor of Science and Technology Studies at Virginia Tech's Center for Interdisciplinary Studies. An expert in genetic technologies and bioethics in medicine, Zallen has served as a member of the NIH Recombinant DNA Advisory Committee and the Subcommittee on Human Gene Therapy, and works to develop policies and guidelines for human genetics research and its clinical applications.
In this slim but admirable volume, Zallen, an expert in genetic technologies and bioethics, has done a terrific job of explaining the basics of genetics, outlining likely scenarios for individuals and families who suddenly (often through prenatal testing or with the birth of a child with a genetic disorder) or eventually (as a possible carrier or family member) need more information on the potential uses of genetic tests. Zallen is clear, concise, and sensitive to the difficult decisions that families will have to make. She explains the current limited number of direct DNA tests and the more elaborate, complex linkage tests. She is particularly good on the degree to which diagnostics has outstripped therapeutics, emphasizing that tests cannot reveal everything and that uncertainty will always be present. The glossary is helpful, without being oversimplified or overly technical, and a useful list identifies resources, organizations, and several website URLs that can provide additional (and updated) information. Highly recommended for all libraries.?Mary Chitty, Cambridge Healthtech, Newton, Mass.
Copyright 1997 Reed Business Information, Inc.
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