Book Review

Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene

N Engl J Med 2008; 358:2416-2417May 29, 2008

Article

Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene
By Masha Gessen. 321 pp. Orlando, FL, Harcourt, 2008. $25. ISBN: 978-0-15-101362-3

This book, written by a Moscow-based journalist, is hard to classify. It is largely a personal and intimate story of the author's struggle to make decisions after she was identified as a carrier of a BRCA mutation — a mutation associated with a high risk of breast cancer — but the story is interwoven with a more general commentary on the difficult dilemmas that the rapidly growing field of genetic identification poses, both for individual patients and for society at large. The author's experience led her to an insightful examination of the many social and medical consequences of identifying people who have a form of a gene that is associated with an increased likelihood of becoming ill or dying early.

Gessen was a war correspondent, and this interesting book reads rather like dispatches from the altered world of someone identified as “at risk.” She writes movingly of the difficulty of interpreting the statistical risks of dying when they apply to you personally, especially when you have seen breast cancer change the lives of family members. She writes compellingly about life as a BRCA mutation carrier: “I would always be ill until proven healthy, and then I would have to prove it all over again in a month or two.” She is a good storyteller, using vivid phrasing to bring home the probabilistic nature of most current genetic testing — “I had my fortune told by a genetic counselor at a hi-tech medical centre in Boston” — and she unflinchingly captures the often agonizing personal effects of the uncertainty that comes with identification as a carrier. She notes that being identified “combines science that is staggeringly precise with what are at best decent estimates and respectable probabilities.”

The book explains some genetic concepts, such as selective advantage and genetic drift, in a readable and accessible way, and it clearly outlines the experiences of Jewish population groups in whom genetic testing has been used. However, in later chapters the strong story line is lost, and the book meanders into a miscellany of topics. Gessen arrives at no particular position on how we might best deal with this rapidly growing new field.

Who should read this book? It does not plow any new ground — all the issues and dilemmas discussed in it are well recognized in the literature of genetics and bioethics— so geneticists and genetic counselors are unlikely to learn anything new. Policy analysis and recommendations are absent, and the author's attitude toward genetic testing is ambiguous, so policymakers will not be helped by it. However, physicians who order genetic tests or people who are contemplating having these tests may find this cri de coeur helpful, and it is an interesting read that certainly will increase their understanding of what they may be getting into.

Patricia A. Baird, M.D., C.M., O.B.C., O.C.
University of British Columbia, Vancouver, BC V6T 1Z3, Canada