To Test or Not To Test: A Guide to Genetic Screening and Risk

by Doris Teichler Zallen

Overview

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 decisionmaking 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 genetictesting decisions. Her examples focus on genetic testing for four types of illnesses: breast/ovarian cancer (different disorders but closely connected), colon cancer, lateonset 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 genetictesting, 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 toolkit for the genetic decisionmaking process.

Product Details

ISBN-13:	9780813545806
Publisher:	Rutgers University Press
Publication date:	09/29/2008
Sold by:	Barnes & Noble
Format:	eBook
Pages:	232
File size:	636 KB

About the Author

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 publicoutreach 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).

Table of Contents

List of Figures and Tables ix Preface xi Important Note xvii Chapter 1 Introduction: Genetic Tests Are Different 1 Chapter 2 A Brief Overview of Susceptibility-Gene Testing 12 Chapter 3 Am I at a Higher Risk for This Disease than Other People? 19 Chapter 4 Will the Test Give Me Useful Information? 39 Chapter 5 Is This the Right Time in My Life to Be Taking This Test? 62 Chapter 6 Will the Advantages Gained from Having the Genetic Information Outweigh the Disadvantages? 73 Chapter 7 Decisions, Decisions 108 Chapter 8 Deciding about Other Types of Genetic Tests 119 Chapter 9 The Future of Genetic Medicine 138 Appendix A Brief Introduction to Genetics 151 Glossary 173 Resources 181 Index 191

Editorial Reviews

"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

"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."

University of Texas Medical Branch-Galveston - Howard Brody

"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."

founder and former president of the National Organization for Rare Disorders - Abbey S. Myers

"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."

University of Michigan Medical School - Elizabeth M. Petty