Reading guide for Mercies in Disguise by Gina Kolata

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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 X
Mercies in Disguise by Gina Kolata
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  • First Published:
    Mar 2017, 272 pages
    Paperback:
    Apr 2018, 272 pages

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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 others) play in uncovering the diagnosis? Would they have been likely to find a diagnosis without this collaboration?
  6. Why was it so difficult to obtain a diagnosis, even in a family with medical backgrounds and with access to expert neurologists?
  7. How does knowing that they have the mutation affect some of the individuals in the book? Are there unexpected consequences from knowing their diagnosis? How are individuals who learn they do not have the mutation affected by that knowledge?
  8. How do you feel about the choice of a family member who opts not to be tested? Can you understand their POV?
  9. Each individual makes their own decision to pursue genetic testing. How much do religious views versus scientific knowledge impact their decision? Are religious views necessarily at odds with scientific mindviews?
  10. How does our increasing ability to test for genetic illnesses before they occur affect your views on the importance of protecting the privacy of medical records?
  11. How did Bill Baxley, Sr.'s experience with the disease differ from that of his sons? Did knowing the name of the disease affect Billy and Buddy's hope as the illness progressed?
  12. Why did Amanda's mother, Kathy, ask her to wait to be tested until after her father had died? Do you believe her father, Buddy, wanted her to be tested? Why or why not?
  13. Which Baxley family member did you find yourself relating to the most? Why?
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Unless otherwise stated, this discussion guide is reprinted with the permission of St. Martin's Griffin. Any page references refer to a USA edition of the book, usually the trade paperback version, and may vary in other editions.

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