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

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 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).