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.
Tests are a standard part of modern medicine. We willingly screen our blood, urine, vision, and hearing, and submit to a host of other exams with names so complicated that we can only refer to them by their initials: PET, ECG, CT, and MRI. Genetic tests of our risks for disease are the latest trend in medicine, touted as an approach to informed and targeted treatment. They offer hope for some, but also raise medical, ethical, and psychological concerns for many including when genetic information is worth having.
To Test or Not to Test arms readers with questions that should be considered before they pursue genetic screening.
Am I at higher risk for a disorder?
Can genetic testing give me useful information?
Is the timing right for testing?
Do the benefits of having the genetic information outweigh the problems that testing can bring?
Determining the answers to these questions is no easy task. In this highly readable book, Doris Teichler Zallen provides a template that can guide individuals and families through the decision-making process and offers additional resources where they can gain more information. She shares interviews with genetic specialists, doctors, and researchers, as well as the personal stories of nearly 100 people who have faced genetic-testing decisions. Her examples focus on genetic testing for four types of illnesses: breast/ovarian cancer (different disorders but closely connected), colon cancer, late-onset Alzheimer's disease, and hereditary hemochromatosis. From the more common diseases to the rare hereditary conditions, we learn what genetic screening is all about and what it can tell us about our risks.
Given that we are now bombarded with ads in magazines and on television hawking the importance of pursuing genetic-testing, it is critical that we approach this tough issue with an arsenal of good information. To Test or Not to Test is an essential consumer tool-kit for the genetic decision-making process.