Contents
About the Book
On her first day on earth, Katie Trebing underwent a blood transfusion
that would become the first of an expected lifetime of them. Diagnosed with
a rare form of anemia, she would require a transfusion every month-or she would
die. But even with a steady supply of red blood cells, iron would eventually
accumulate in her heart and liver, potentially destroying her organs by the
time she reached forty.
Faced with their daughter's devastating prognosis, Stacy and Steve Trebing
made the difficult decision to pursue the only known cure: a bone marrow transplant
from a genetically matched sibling. Using preimplantation genetic diagnosis
(PGD) and in vitro fertilization, they would create a "savior sibling"
for Katie, a lengthy, complex, and emotional process. Here, Beth Whitehouse
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 as reproductive technologies advance.
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Praise
"Whitehouse's nimble explanations of complex medical issues in laymen's
terms and her penetration of the Trebings' decision-making process will benefit
other parents in similar circumstances."
—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 her life, Beth Whitehouse
takes us on a journey so rich in hope, commitment, and love that it forces us
to suspend any judgments we might have held. Instead, we root for this family,
as they-aided by their tireless relatives, dedicated friends, and team of exemplary
medical professionals-step right 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 potentially dangerous 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 modern science-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
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About the Author
Beth Whitehouse is a Pulitzer Prize-winning reporter for Newsday. Her
five-part front-page series "The Match," which was the basis for this
book, won numerous awards, including the American Association of Sunday and
Feature Writers First Place for Narrative Writing, a National Association of
Science Writers Award, and a Casey Medal for Meritorious Journalism in Service
to Children. Whitehouse is an adjunct professor of journalism at Columbia University.
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Questions for Discussion
- 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 future relationship. What are some
of the possible problems or benefits of Katie's thinking of Christopher as
being "made especially for [her]"?
- 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 and relationship 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?
- The Trebings' first child, Calvin, has clearly been deeply affected by Katie's
illness, his parents' focus on her treatment, and Christopher's special contribution
to Katie's life. How might his understanding of the process his family undergoes
differ from that of Katie's, Christopher's, or their parents'?
- When Stacy and Steve arrive at Camp Sunshine, Stacy is surprised to learn
that other parents don't share their optimism about the bone marrow transplant
they hope will save Katie'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 medical procedure you had firmly
decided was best for your child? What would you do if you were in Stacy's
position?
- Stacy and Steve decide that the 90 percent chance of a permanent cure for
Katie is worth the risk of a bone marrow transplant, even though they are
aware of stories like that of the Zangrandos, whose son died of complications
from his transplant (pp. 75-80). With conflicting advice from doctors and
other parents, do you think they made the right choice 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?
- The Trebings are told that a human leukocyte antigens (HLA) match sibling
is the only chance for a cure for Katie. If using PGD to conceive a "savior
sibling" is ethical in certain last-resort cases, is it still ethical
when other treatments are available? If using PGD to create a "savior
sibling" is not the only option, do parents have a responsibility to
exhaust other options first?
- The Trebings conceived Christopher believing that a transplant from his
umbilical cord blood would be sufficient to save Katie. Later her doctor decided
that using Christopher's bone marrow would improve Katie's chances of recovery,
something the Trebings had wanted to avoid (p. 200). Do you think it was right
to make Christopher undergo the potential pain and medical risk of surgery?
Where should the line be drawn as to what can be expected of donor siblings?
- In the 2004 novel My Sister's Keeper, author Jodi Picoult tells the
story of Anna, a PGD/IVF sibling conceived to save the life of her older sister,
who suffers from leukemia. Anna undergoes repeated medical procedures for
her sister's benefit, and ultimately decides to sue her parents for control
of her own body when she is expected to donate a kidney. If you have read
the novel, how do you feel it compares to the story portrayed in The Match?
Do you feel that My Sister's Keeper is too extreme a case to shed 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?
- Stacy and Steve said they had always wanted to have a third child, even
before Katie became 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 had failed to save Katie?
- In chapter 4, we learn that the fertility practice Reproductive Specialists
of New York do embryo biopsies for medical reasons only. But some laboratories
in the United States have already started offering PGD for nonmedical reasons-for
example, because the parents specifically want a boy or a girl (p. 27). Do
you think it is wrong for parents to select 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 for a deaf child in
the IVF process (pp. 139-40)? Where exactly would you draw the line between
proper and improper uses of PGD?
- PGD allows parents whose offspring will be at high risk for certain genetic
diseases to learn whether or not their embryos carry genetic mutations before
the beginning of pregnancy, potentially saving them from having to choose
an abortion (pp. 33-35). Dr. Hughes distinguishes between testing the embryos
for specific diseases carried by the parents, a more urgent need, and testing
for any and all diseases, saying PGD is a measure "for desperate couples"
(p. 39). But should PGD be used in more cases, for instance, to prevent diseases
doctors may not even be able to predict? If given the choice, do you think
more parents would use PGD if they could ensure that they would have healthy
children?
- Dr. Hughes first encounters the idea of using PGD to identify an HLA match
as a suggestion from a desperate parent. Later, he wonders if he is crossing
a line using PGD in this way (p. 40) but ultimately decides that the parents
"have pruned this disease from their family tree forever and also have
a baby that, when it's born, they have the cord blood and can give it to the
child that's sick. I don't know what's right for the general population, but
I knew what was right for them" (p. 42). Should the use of PGD be determined
on a case-by-case basis? If so, who should determine whether it is ethical
to use PGD?
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Further Reading
Fiction
My Sister's Keeper. Jodi Picoult, 2004.
Nonfiction
The Strongest Boy in the World: How Genetic Information Is Reshaping Our
Lives. Philip R. Reilly, 2006.
Saving Henry. Laurie Strongin, 2010.
Everything Conceivable. Liza Mundy, 2007.
Making Babies: Personal IVF Stories. Theresa Miller, 2008.
Journalism
"PGD: Fact vs. Fiction. Genesis Genetics Institute Sets the Record Straight
about PGD and Its Uses in HLA Matching," Genesis Genetics Institute,
http://www.genesisgenetics.org/docs/My_Sister's_Keeper.pdf .
A statement from Dr. Hughes's Genesis Genetics Institute on PGD and literary
license in the film My Sister's Keeper: "The Made-to-Order Savior"
by Lisa Belkin,
http://www.nytimes.com/2001/07/01/magazine/the-made-to-order-savior.html. This
2001 New York Times Magazine piece is about two DBA families, the Nashes and
the Strongin Goldbergs, who go through the process of PGD and HLA matching,
with drastically different results.
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