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Genetic Crossroads


The intersection of biotechnology, reproduction and society

by The Center for Genetics and Society

My Sister’s Keeper and Genetic Selection

What a movie can teach us about families and technology

Published on July 22, 2009 by
Jesse Reynolds

in
Genetic Crossroads


Works of speculative fiction, especially as portrayed in movies, often highlight the spectacular
potentials of technology for good and for ill. While technology’s benefits typically provide
backgrounds for Hollywood’s bright and shi
ny futures, its drawbacks often feature at the center
of plots. For example, the stories told both in the movie
GATTACA
and the novel
Brave New
World

itself set for a film production by the great science fiction director Ridley Scott

offer
striking dystopi
an visions of reproductive and genetic technologies.

My Sister’s Keeper
, the first movie based on a novel by best
-
selling author Jodi Picoult,
confronts more subtle challenges posed by contemporary genetic and reproductive techniques.
Instead of imagining
worlds transformed, it focuses on family dynamics. What damage, it asks,
can be wrought upon a child by
parents

with the best of intentions?

The story
revolves around 13
-
year
-
old Anna, a child created in order to serve as a matched tissue
donor for her older sister Kate, who suffers from leukemia. Anna’s umbilical cord blood is
harvested when she is born. As she gets older, she undergoes a series of prog
ressively more
invasive and risky procedures to provide bone marrow and other tissues for her sister.

But after a remission, Kate’s cancer returns. Now Kate needs a kidney, and Anna’s parents
assume she will make one of hers
available. But Anna has a different idea. She hires a lawyer to
help her become "medically emancipated" from her family.

The basic premise of
My Sister’s Keeper


families who decide to create "savior siblings" to try
to save an existing child


is not fic
tional. Technicians can screen the multiple embryos that are
typically produced with
in vitro
fertilization
and choose those that have the desired genetic
character
istics. The embryo selection procedure is known as
pre
-
implantation genetic diagnosis

(PGD).

Some of these families’ efforts seem to have had completely happy outco
mes, saving an older
child simply by using the umbilical cord blood of the tissue
-
matched newborn. There are no
reported cases in which a savior
sibling

has donated an organ. But as most observers
acknowledge and as
My Sister’s Keeper

dramatizes, the ethical ice can get pretty thin. What
happens if additional tissues are needed, and the savior sibling becomes a "spare parts baby?"

A British m
other who conceived a genetically matched child to treat an older son with a rare
form of life
-
threatening anemia recently discussed her reaction to
My Sister’s Keeper

with a
reporter. Her story is one of the happy ones. But,
she acknowledged
, "It never crossed my mind
that we would have to use Jamie again, and it was never mentioned to us, either." Asked what
she would do if her older child has a re
lapse, she said, "Well, I don't know. But that wouldn't be
our decision. It would be up to the courts. Not like in this film, where they just used that child for
everything without even consulting her."

To some people, using PGD to create a savior sibling
belongs in the same logical and ethical
category as using it to choose a child’s other characteristics. Jamie’s mother adamantly
disagrees. She rejects the notion that children like her son are "designer babies." "What did we
design about Jamie?” she asked
. "Not his eye color, his hair color, his IQ, his height."

This mother’s argument


and her family’s situation


are compelling. But in thinking about the
uses and regulation of PGD, it’s important to notice that some of the design practices to which
she r
efers are not far downhill on a very slippery slope. PGD was originally offered to prevent
the births of children with fatal
childhood

diseases like Tay Sachs. Soon it was being used to
screen out embryos with
genes

associated with far less serious conditions, including some that
may nev
er manifest themselves, never occur until
middle age
, or are treatable.

Now, not even 20 years after PGD was first introduced, many fertility clinics openly advertise
that they will use it to select the
sex

of future children. In 2006,

a survey found that
42% percent
of clinics offering PGD acknowledged providing the service for non
-
medical sex selection
.

And earlier this year, Los Angeles fertility specia
list Jeffrey Steinberg announced that his clinic
would soon offer PGD to choose future children’s eye color, hair color, and skin color. He
initially
dismissed the barrage of cri
ticism that ensued
, arguing that what he's offering is little
different from existing procedures for adults: "I live in L.A. and everyone here wants to have a
straight nose and high cheekbones and are perfectly happy to pay for cosmetic surgery."

Steinberg eventually backed down
, at least for now, saying that he was "suspending" his offer.
But this episode and the growing use of PGD to select sex make concerns about children w
ith
pre
-
determined traits all too relevant. Increasing knowledge of genetic function means that ever
more features could potentially be selected, at least on a probabilistic basis.

Looking beyond selection to the genetically manipulated animals that now po
pulate laboratories
around the world, some enthusiasts have advocated the use of genetic modification techniques to
"redesign" and "enhance" future children and generations. This is especially troubling since the
US, has little meaningful public policy on
reproductive and genetic technologies. Instead, we
rely on non
-
binding guidelines drawn up by
representatives of the $3 billion fertility industry
.
And unlike nearly
every other industrialized nation
, we have
no federal laws

prohibiting genetic
modi
fication of future generations.

Some commentators are concerned that
My Sister’s Keeper
will encourage unthinking rejection
of a procedure that can save lives. But although the story it tells about a child expected to
uncomplainingly donate her kidney is e
xtreme, it is certainly worth careful consideration. Can
we rely on parents and doctors to protect savior siblings as fiercely as they fight for the siblings
their younger children were created to save? However much we assume their best intentions, we
shou
ld also notice the conflicting pressures and emotional
traumas

they would face. And we
need to acknowledge the substantial room for concern about already exi
sting and prospective
uses of PGD for non
-
medical purposes.

What’s needed are some basic and enforceable rules of the road for PGD and other high
-
tech
reproductive procedures


policies that would bring the US in line with other nations. Perhaps
My Sister’s Keeper
will catalyze some much
-
needed debate.