Description: This is an extended discussion of the results of semistructured interviews with persons at risk for three genetically-linked diseases: breast/ovarian cancer, Huntington's disease, and alpha-1 antitrypsin deficiency.
Purpose: The book shows the variety of ways that the interviewees deal with decision-making related to their risk for disease and the results of their choices. Though somewhat successful, the author is overly ambitious with his project: each chapter could easily be a book in itself.
Audience: Although the frequent references to scholarly work on the issues as well as to philosophical and psychological traditions indicate an intention to appeal to a scholarly audience, this book does not engage the issues with sufficient rigor or depth to appeal to this audience. On the other hand, it is a novel resource for patients and practitioners who are entering into the world of genetic testing and want an introduction to the types of issues that arise and the different ways that people deal with them.
Features: The book proceeds roughly chronologically, from the initial decisions to test, to the understanding of what the results mean, to treatment decisions, to decisions about with whom to share the information, to implications of these decisions for communities, and policy. What this book does best is put each often-discussed issue into the patient's own words. The quotes are often insightful, sometimes sad, and frequently illuminating. The other strength of this book, which is also a weakness, is its breadth. Although the author at times refers to his data as "contradicting" or "undermining" prevailing views, and he indeed questions the accuracy of many theories, he has lost the ability to show patterns sufficient to challenge theories due to this breadth.
Assessment: While the unique approach of presenting patients' views in their own words is laudable, the patients themselves often get lost in the vast scope of the book and the author is forced to remind readers constantly of patients' identities with macabre cocktail party introductions. The book would have been better broken out into a series, with more focus in each one, rather than a compendium that overwhelms readers with its mass of information and complexity. This being said, the book provides a novel window into the world of regular people facing unprecedented problems in the new world of genetic technologies, and the author is correct in noting that we have a lot to learn from these pioneers.