Summary and book reviews of Mercies in Disguise by Gina Kolata

Mercies in Disguise

A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them

by Gina Kolata

Mercies in Disguise by Gina Kolata
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  • Published:
    Mar 21, 2017, 272 pages

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About this Book

Book Summary

The phone rings. The doctor from California is on the line. "Are you ready Amanda?" The two people Amanda Baxley loves the most had begged her not to be tested--at least, not now. But she had to find out.

If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you'd inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible?

In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution--not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma--fertility specialists had created a way to spare the children through an expensive process.

A work of narrative nonfiction in the tradition of the The Immortal Life of Henrietta Lacks, Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It's a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman--Amanda Baxley--who faced the future head on, determined to find a way to disrupt her family's destiny.

Please be aware that this discussion guide may contain spoilers!
  1. What is the meaning of the title, Mercies in Disguise? What mercies are apparent for the family members? Do the family members see different mercies?
  2. If you knew that you were at risk for a fatal genetic condition that had no cure, would you want to be tested for the genetic mutation? Why or why not? What if the person at risk were your child? Your spouse?
  3. Why do you think the history of the Fore in New Guinea was included? How did the discovery of Kuru lay a foundation for discoveries about GSS and other prion diseases?
  4. What role do chance or coincidence play in scientific discoveries discussed in the book? What role does scientific collaboration play?
  5. What role did each member of the family (Tim, Mike, Buddy, and the ...
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Reviews

Media Reviews

Kirkus Reviews

The panic is palpable in Kolata's moving depiction of a mysterious disease and its frightening consequences.

Publishers Weekly

Kolata’s book reads like a medical thriller and readers will be caught up in the lives of the protagonists.

Library Journal

Though at times the book adopts the tone of a Hallmark made-for-TV movie, its hopeful, struggle-against-the-odds story will find a library audience.

Author Blurb Dr. Abraham Verghese, author of New York Times bestseller, Cutting for Stone


Mercies in Disguise reads like a medical thriller; I simply couldn't stop once I began.

Author Blurb Sylvia Nasar, author of A Beautiful Mind, winner of the National Book Critics Circle Award for Biography
[An] extraordinary medical mystery, scientific history and, above all, human drama. Once I started reading, I couldn't stop. Then, when I finished it, I couldn't stop thinking about the Baxleys and the choices they faced.

Reader Reviews

Viqui G. (State College, PA)

Mercies in Disguise
Genetic diseases are very chilling since there is no medication or antibiotic to "cure" them. This book was a fascinating true story of a family unknowingly affected by a genetic neurological disorder that we learn later in the book is GSS (...   Read More

Janice C. (Hayward, CA)

Mercies In Disquise
Loved Henrietta Lacks. Loved Mercies In Disguise. Left me with the question ... what would I do?

Joan B. (Ellicott City, MD)

Mercies in Disguise
Gina Kolata successfully links scientific research with family challenges. I was particularly interested in genetic links to specific diseases.since I have lost two siblings to different forms of cancer. I am faced with the same illness in a ...   Read More

SusanS

Mercies in Disguise by Gina Kolata
"Mercies in Disguise" traces both science and human drama: Is prion disease real? Why is the medical establishment so skeptical? Assume it's real--how would a deeply religious Southern Baptist respond to caring for the disabled, warning ...   Read More

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