The Age of Biotech

And the challenges it presents.

My Sister’s Keeper and Genetic Selection

What a movie can teach us about families and technology.

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 shiny 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 dystopian 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 progressively 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 fictional. Technicians can screen the multiple embryos that are typically produced with in vitro fertilization and choose those that have the desired genetic characteristics. The embryo selection procedure is known as pre-implantation genetic diagnosis (PGD).

Some of these families’ efforts seem to have had completely happy outcomes, 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 mother 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 relapse, 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 refers 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 never 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 specialist 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 criticism 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 with 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 populate 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 modification 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 extreme, 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 should also notice the conflicting pressures and emotional traumas they would face. And we need to acknowledge the substantial room for concern about already existing 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.

Jesse Reynolds is a former researcher for the Center for Genetics and Society.

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