BookBrowse Reviews Mercies in Disguise by Gina Kolata

BookBrowse:

Mercies in Disguise is a page-turning medical mystery involving the identification of a rare genetic disease and its impact on one family.

All 38 Bookbrowse readers who reviewed the book gave it either four or five stars for a total overall rating of 4.7.

What would you do if you knew that a genetically-transmitted, debilitating neuromuscular disease was lurking in your family and you had the opportunity to undergo testing to discover if the gene resided inside you? And if you learned that you carried the gene, what accommodations would you make to your life in preparation for what lies in your future? In Mercies in Disguise, Gina Kolata tells the story of an endearing family who faces the consequences of such decisions (Maribeth R). Science and family intersect through Amanda Baxley who has lost her grandfather to the disease and is watching her father and uncle succumb. She must decide whether she wants to know her future and if so, will she risk passing on the disorder to her hypothetical unborn children?

The sections of the book dealing with the scientific aspects were accessible, according to many readers:

The author does a masterful job introducing the reader to a little known genetically inherited disease with no cure (Barbara O). She writes in language that the average non-scientific reader can follow and understand (Caryl L). The difficult medical concepts were explained quite clearly (Janet P). I was totally fascinated by the unfolding of the medical discoveries and research that were occurring around the world. The author connected the pieces in a way that was both informative and understandable (Kathleen W). You don't have to be a science person to enjoy this book (Lynne S).

But the real highlight of the book was the author's focus on the family effected by the disease:

You will love and admire these people as you follow their story and their quest to diagnose the illness that has manifested itself in the family's patriarch. The resultant questions and the individual decisions and impact on each family member keep you engaged and emotionally invested in their story. I cannot say enough about the dignity and courage of this family as they make their decisions once they learn the identity of this disease and its physical impact on their loved ones (Barbara O). The decisions to be genetically tested seemed agonizing and the consequences of living with the outcome of the testing even more so. Adding the Baxleys' stories to the book made it so much more personal and human (Anne G). They became my friends and I was quite emotionally involved in their story (Sandra L).

The book caused many to ponder how they'd react in similar circumstances:

The haunting question that this book raises is, "If you had a 50/50 chance of carrying a gene that would result in your early death from a horrible disease that had no cure, would you take the test to find out?" (Kathleen W). Kolata made me really think, "What would I have done if in this family's shoes?" (Ruth H). The book is thought provoking, not only about the ethical questions raised regarding genetic testing for this rare disease, but for issues in in vitro fertilization and even breast cancer gene testing (Peggy H).  It should be a discussion starter for all of us as we face the expanding ability of medicine to answer questions that may be better unasked. This book will stimulate your thinking (Maribeth R). I was surprised at how strong my opinions were about the choices the different people in the book made: about getting tested or not, and having children or not. So I learned something about myself as well (Susan B).

Readers found Mercies in Disguise fast-paced:

I wasn't sure what to expect when I received this book, but I couldn't put it down. It was so intriguing and so fascinating, I found it hard to believe that it was true (Peggy H). I devoured this book in less than a day (Barbara O). The story grabbed me from the first page. The book read like a novel and haunts me now two weeks after I finished it (Janet P). Profoundly compelling (Beverly J).

Endorsed for a broad audience but especially those interested in medicine and science:

If you liked The Immortal Life of Henrietta Lacks you will enjoy Mercies in Disguise (Sandra L). I would recommend it to anyone who likes medical detective stories (Carm D). I heartily recommend it especially to anyone who is interested in medicine or science (Viqui G). I highly recommend this book for the use of book club discussions, as it presents a timely and real world dilemma for discussion: such as, do we really want to know the perils of our future? (Emily C).

This review was originally published in The BookBrowse Review in April 2017, and has been updated for the April 2018 edition. Click here to go to this issue.