Just finished reading this excellent book; here’s my review.
BTW, I copied my review from my Goodreads page.
Masha Gessen, a journalist in her late thirties, discovers through genetic testing that she carries a gene that makes her likely to develop breast and/or ovarian cancer. To help her decide whether and how to act on this knowledge, Gessen researches the history of genetic disease and genetic testing, and visits many scientists, past and present patients, and their families.
The book is precisely written and gives a thorough, rigorously thoughtful take on heredity and what genetic testing means for us now and in the future. Gessen ably balances her reporting with her personal experience, using each to inform the other. She raises questions I had never thought of, but will probably have to deal with in my lifetime. She doesn’t always give answers, either; part of what makes the book so interesting is that it’s never clear that there are one-size-fits-all answers to the questions we have about genetic testing – making the pondering of the questions that much more important.
The book is divided into three sections: The Past, The Present, and The Future. In the first, Gessen describes her family’s challenges with their inherited diseases, and inquires how these hereditary diseases get passed down in the first place. Gessen is of Ashkenazi Jewish heritage, and this group has been particularly afflicted with hereditary disease; this seems particularly poignant since the topic of genetic testing immediately brings up distasteful connotations of eugenicism and Nazi thinking. “The Past” is a fascinating blend of scientific research and philosophical musings on family, relationships, and community.
In “The Present,” Gessen explores the current state of genetic testing, including how it developed, who has been affected, and how she came to her decision about how to act on her own genetic knowledge. In this section Gessen gets more deeply into the cruel variety of hereditary diseases and how these diseases shape the lives of those who have them. She also shows how the advent of genetic testing has completely altered these lives in ways that were previously unimaginable. This section is the longest and is densely packed with stories and information that help to round out whatever thoughts “genetic testing” already conjure up in our minds.
The final section, “The Future,” looks at where genetic testing is likely to take us in the future, and the fears this future evokes. Gessen very much argues that this future has already arrived, and therefore philosophical/ethical hand-wringing is of little use. Instead, she makes a compelling case that we need to look at what we already know and what testing could help us know, and start our thinking from there. The book ends rather abruptly and the reader is left to ponder her own philosophical/ethical questions without any recap or explicit guidance from the author.
I especially recommend this book if you, like me, are kind of uneasy about genetic testing without really knowing what it entails.
[This post was imported on 4/10/14 from my old blog at satsumabug.livejournal.com.]