BLACKSBURG, Va., Aug. 14, 1997--To know or not to know. That is the medical question that faces some people today as the technology for DNA testing sometimes outstrips the ability to treat any disorders that may be discovered. Is it better to know and not be able to do anything about it or to be ignorant of one's predisposition for a genetic illness?
In Does It Run in the Family?, Virginia Tech Professor Doris Teichler Zallen gives people the knowledge with which to make decisions concerning genetic testing for such disorders as Alzheimer's, breast cancer, sickle-cell anemia, Huntington disease and muscular dystrophy. More and more, people are asking if there is a test to predict their risk for a disorder and whether they really want to have the test done.
In a case profiled in the book, for example, a woman called Sophie Baldwin (fictitious name used to protect her privacy) has a family history of breast cancer. Almost every female relative had died of that disease, and she is convinced she has inherited the disease. Although she is eager to be tested for breast cancer, she decides against doing so because she is afraid her insurance company might cancel her policy, raise her rates, or consider breast cancer a pre-existing condition. "Once this information gets out, there might be other people interested in it," Zallen said.
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. She works to develop policies and guidelines for human-genetics research and its clinical applications.
While tests are available for many disorders and can provide information that was not available before, they can raise new and troubling questions, said Zallen, a geneticist and science policy expert in Science and Technology Studies at Virginia Tech's Center for Interdisciplinary Studies. "Will that information affect the way we live our lives? Will we stop eating high-fat foods to ward off heart disease? Or will we worry over every ache and pain? Should we share the knowledge with other family members? Do we really want to know?"
In her book, Zallen explains how genetic disorders are passed along in families, which disorders can be tested for, how DNA tests work, what such tests can and cannot reveal, and why the tests often do not give clear-cut answers. For example, Zallen said, if a person has the gene for certain single-gene diseases, such as Huntington's and sickle-cell, he or she will definitely get the disorder--but when it will appear and how severe it will be is not shown just by the presence of the gene. In other, more complicated diseases, such as breast cancer and Alzheimer's, environmental influences play an important role in whether the person possessing the gene gets the disease. "A person may have the gene that predisposes him to heart disease, but if he has a good lifestyle, he may not get it," Zallen said. A person thinking about being tested needs to know all the relevant facts.
The book also explains what 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.
By presenting stories of real families and the choices they made, Zallen helps readers think through their own alternatives and discuss them with relatives. "Does It Run in the Family? is a must for anyone considering genetic testing, and facing its personal, familial, and societal implications," said Joan O. Weiss, founding director of the Alliance of Genetic Support Groups.
"The best protection against the misuse of genetic information and genetic testing is an informed consumer," said Kimberly A. Quaid, professor of medical and molecular genetics at the Indiana University School of Medicine. "Dr. Zallen has provided us with a comprehensive book that covers not only the scientific aspects of genetic diseases but the emotional and social implications of testing that must be considered as well, and has done so in a clearly written fashion suitable for the general public."
The Library Journal said Zallen "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 through 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 fmailies will have to make."
Does It Run in the Family is published by Rutgers University Press and is available through bookstores.