To Test or Not to Test

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.

"Doris Teichler Zallen provides readers with a refreshingly honest and carefully researched up-to-date discussion about the utility and limitations of predictive genetic testing. Seamlessly woven throughout the book are candid first-person accounts from diverse men and women--individuals who vividly describe both their positive and negative experiences associated with genetic testing--making this a captivating book that broadens our minds while touching our hearts."--Elizabeth M. Petty, MD "University of Michigan Medical School", "Dr. Zallen has a unique talent for translating complicated scientific and ethical matters around genetic screening into understandable concepts that families and individuals can use to make decisions about risk and testing."--Abbey S. Myers "founder and former president of the National Organization for Rare Disorders", "New genetic tests are being developed and offered at a dizzying pace, considerably outstripping the ability of most practicing physicians, let alone the general public, to understand how best to use them. Doris Teichler Zallen here offers a valuable guide, informed by both a thorough grasp of the underlying genetic science as well as the actual experiences of others who have faced difficult decisions to be tested or not."--Howard Brody, MD, PhD "University of Texas Medical Branch-Galveston", "The book's rich discussion of ethical issues will provide a sound knowledge base for readers ranging from patients and their families to advanced undergraduated to health care providers. This is an exceptional resource that this reader could not put down. Highly recommended."-- "Choice", "With rapidly changing developments in genetic resesarch, new information is needed on a regular basis, and Zallen's well-written, reasonably priced volume is the perfect answer. The guidance here will go a long way toward helping individuals make the choice that is right for their own personal circumstances. Essential."--Tina Neville "Library Journal"

Doris Teichler Zallen is a professor of science and technology studies at Virginia Tech. She has served on the National Institutes of Health Recombinant DNA Advisory Committee and is the recipient of awards for her research, teaching, and public-outreach activities. She is also the author of Does It Run in the Family?: A Consumer's Guide to DNA Testing for Genetic Disorders (Rutgers University Press).