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A Reader's Guide to The Match by Beth Whitehouse

A Reader's Guide to The Match by Beth Whitehouse

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Published by Beacon Press

This is a reader's guide to The Match by Beth Whitehouse.

Katie Trebing was diagnosed at three months old with Diamond Blackfan anemia, a rare form of anemia that prevents bone marrow from producing red blood cells. Even with a lifetime of monthly blood transfusions, she faced a poor prognosis. Pulitzer Prize-winning journalist Beth Whitehouse follows the Trebings as they make the decision to create a genetically matched sibling using preimplantation genetic diagnosis (PGD) and in vitro fertilization, and proceed with a risky bone-marrow transplant that could kill their daughter rather than save her. The Match is a timely and provocative look at urgent issues that can only become more complex and pressing as genetic and reproductive technologies advance.

This is a reader's guide to The Match by Beth Whitehouse.

Katie Trebing was diagnosed at three months old with Diamond Blackfan anemia, a rare form of anemia that prevents bone marrow from producing red blood cells. Even with a lifetime of monthly blood transfusions, she faced a poor prognosis. Pulitzer Prize-winning journalist Beth Whitehouse follows the Trebings as they make the decision to create a genetically matched sibling using preimplantation genetic diagnosis (PGD) and in vitro fertilization, and proceed with a risky bone-marrow transplant that could kill their daughter rather than save her. The Match is a timely and provocative look at urgent issues that can only become more complex and pressing as genetic and reproductive technologies advance.

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Published by: Beacon Press on Nov 30, 2012
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09/29/2013

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Reader's Guide:
The Match
 
The MatchAuthor: Beth Whitehouse  Hardcover | $24.95 | Available NowPaperback  | $16.00 | On Sale April 4, 2011
Contents
 
 
 
 
 
About the Book
On her first day on earth, Katie Trebing underwent a blood transfusion that would become thefirst of an expected lifetime of them. Diagnosed with a rare form of anemia, she would require atransfusion every month-or she would die. But even with a steady supply of red blood cells, ironwould eventually accumulate in her heart and liver, potentially destroying her organs by the timeshe reached forty.Faced with their daughter's devastating prognosis, Stacy and Steve Trebing made the difficultdecision to pursue the only known cure: a bone marrow transplant from a genetically matchedsibling. Using preimplantation genetic diagnosis (PGD) and in vitro fertilization, they wouldcreate a "savior sibling" for Katie, a lengthy, complex, and emotional process. Here, BethWhitehouse follows the Trebings' journey and delves into the complex bioethics of PGD.
The Match
is a provocative look at bioethical problems that are certain to become more pressing asreproductive technologies advance.
Praise
"Whitehouse's nimble explanations of complex medical issues in laymen's terms and herpenetration of the Trebings' decision-making process will benefit other parents in similarcircumstances."
 — 
Publishers Weekly
 "
The Match
is a thought-provoking, extremely well-researched, and deeply personal account of one of the most controversial ethical dilemmas of our time. By allowing readers to walk beside
 
the Trebing family as their daughter's illness leads them to conceive a sibling who might save herlife, Beth Whitehouse takes us on a journey so rich in hope, commitment, and love that it forcesus to suspend any judgments we might have held. Instead, we root for this family, as they-aidedby their tireless relatives, dedicated friends, and team of exemplary medical professionals-stepright to the edge of contemporary science. The result is a great story, and a remarkable work of  journalism."
 — 
Rachel Simon, author of 
 Riding the Bus with My Sister 
 "In the quest to cure their daughter, Steve and Stacy Trebing made an enormous and potentiallydangerous medical decision-which inevitably led to another decision, and another, and another,as medical decisions tend to do in this day and time. Beth Whitehouse was there with them,witnessing their struggle and capturing it with accuracy and empathy.
The Match
is a riveting,vividly written tale of what happens when two powerful forces-parental love and modernscience-converge to try to help a very brave child through the deliberate conception of another."
 — 
Liza Mundy, author of 
 Everything Conceivable: How Assisted Reproduction Is Changing Our World 
 
About the Author
Beth Whitehouse is a Pulitzer Prize-winning reporter for
 Newsday
. Her five-part front-pageseries "The Match," which was the basis for this book, won numerous awards, including theAmerican Association of Sunday and Feature Writers First Place for Narrative Writing, aNational Association of Science Writers Award, and a Casey Medal for Meritorious Journalismin Service to Children. Whitehouse is an adjunct professor of journalism at Columbia University.
Questions for Discussion
1.
 
At one doctor's appointment, Stacy points to a sonogram image and says, "Look, Katie,there's your miracle baby. Say hi. That was made especially for you. With love" (p. 100).Christopher's being born to save his sister's life has a lot of implications for their futurerelationship. What are some of the possible problems or benefits of Katie's thinking of Christopher as being "made especially for [her]"?2.
 
Should anyone be born for a specific purpose, such as donating bone marrow to another?How might being conceived for a specific reason or objective affect a child's future andrelationship with his or her family? Do you think it is unethical? Or are some reasons justified, such as donating blood that will save someone's life, and others not, such as,say, donating an organ?3.
 
The Trebings' first child, Calvin, has clearly been deeply affected by Katie's illness, hisparents' focus on her treatment, and Christopher's special contribution to Katie's life. Howmight his understanding of the process his family undergoes differ from that of Katie's,Christopher's, or their parents'?4.
 
When Stacy and Steve arrive at Camp Sunshine, Stacy is surprised to learn that otherparents don't share their optimism about the bone marrow transplant they hope will saveKatie's life. Stacy asks herself, "Am I a bad mother that I want to do this?" (pp. 68-69).
 
How do you think it would feel to encounter this kind of opposition to a medicalprocedure you had firmly decided was best for your child? What would you do if youwere in Stacy's position?5.
 
Stacy and Steve decide that the 90 percent chance of a permanent cure for Katie is worththe risk of a bone marrow transplant, even though they are aware of stories like that of theZangrandos, whose son died of complications from his transplant (pp. 75-80). Withconflicting advice from doctors and other parents, do you think they made the rightchoice to perform the surgery on four-year-old Katie? Should Katie, now or in the future,have a say in what happens? What about Christopher?6.
 
The Trebings are told that a human leukocyte antigens (HLA) match sibling is the onlychance for a cure for Katie. If using PGD to conceive a "savior sibling" is ethical incertain last-resort cases, is it still ethical when other treatments are available? If usingPGD to create a "savior sibling" is not the only option, do parents have a responsibility toexhaust other options first?7.
 
The Trebings conceived Christopher believing that a transplant from his umbilical cordblood would be sufficient to save Katie. Later her doctor decided that using Christopher'sbone marrow would improve Katie's chances of recovery, something the Trebings hadwanted to avoid (p. 200). Do you think it was right to make Christopher undergo thepotential pain and medical risk of surgery? Where should the line be drawn as to whatcan be expected of donor siblings?8.
 
In the 2004 novel
 My Sister's Keeper 
, author Jodi Picoult tells the story of Anna, aPGD/IVF sibling conceived to save the life of her older sister, who suffers fromleukemia. Anna undergoes repeated medical procedures for her sister's benefit, andultimately decides to sue her parents for control of her own body when she is expected todonate a kidney. If you have read the novel, how do you feel it compares to the storyportrayed in
The Match
? Do you feel that
 My Sister's Keeper 
is too extreme a case toshed light on the ethics of PGD, or do you think it raises relevant questions about PGD?Would such a scenario ever be possible or likely in the future?9.
 
Stacy and Steve said they had always wanted to have a third child, even before Katiebecame ill (p. 22). However, Christopher was conceived especially for Katie's benefit.How might the parents' relationship with Christopher have been altered if his marrow hadfailed to save Katie?10.
 
In chapter 4, we learn that the fertility practice Reproductive Specialists of New York doembryo biopsies for medical reasons only. But some laboratories in the United Stateshave already started offering PGD for nonmedical reasons-for example, because theparents specifically want a boy or a girl (p. 27). Do you think it is wrong for parents toselect embryos for nonmedical traits, such as gender, intelligence, or sexual orientation?What about the case Whitehouse mentions, of the deaf couple that attempted to select fora deaf child in the IVF process (pp. 139-40)? Where exactly would you draw the linebetween proper and improper uses of PGD?

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