A Real-Life Version of “My Sister’s Keeper”

Posted by Marcy Darnovsky May 6, 2010
Biopolitical Times
"Savior siblings" – children created as genetic matches to provide tissues for a sick sister or brother – constitute a difficult ethical challenge. Who looks out for the so-called savior's best interests? What happens if the sick sibling needs tissues or even organs beyond the typically used umbilical cord blood or bone marrow? What conditions are serious enough to warrant creating a child for the purpose of providing tissues to someone else? In Kantian terms: Is it appropriate to bring a new child into the world as a means to an end, even an end as worthy as saving a life?

The need to consider such a move involves agonizing family deliberations. Parents desperate to treat a seriously ill or dying child are faced with momentous decisions about what they can and should do, about what and who they can live with. Should they put their sick child through a dangerous medical procedure that might allow her to lead a normal life – but that also might kill her? Can they bring another child into their family when their resources and emotions are already so stretched? How will they feel if the rescue operation fails and their ailing child dies in spite of – or because of – their efforts?

Many of these dilemmas were explored fictionally in Jodi Picoult's 2004 novel My Sister's Keeper and in the 2009 movie based on it. Now Pulitzer Prize-winning journalist Beth Whitehouse brings them to life in an intimate account of a real family in The Match: "Savior Siblings" and One Family's Battle to Heal Their Daughter.

The Match, based on a front-page series published by Newsday, follows the story of a couple whose infant daughter Katie is diagnosed with Diamond Blackfan anemia, a rare blood disorder that requires monthly blood transfusions and portends a truncated life expectancy. Doctors tell them about the option to have a genetically matched child via in vitro fertilization and pre-implantation genetic diagnosis. They also advise that 1) children with DBA now live well into adulthood with conventional treatments, albeit with an array of problems, 2) a bone marrow transplant from a genetically matched sibling has a high chance of helping or curing Katie, and 3) there's a ten percent chance that Katie won't survive the treatment.

Katie's parents decide to go the "savior sibling" route. Two cycles of IVF and PGD later, Baby Christopher is "born with a job-to-do." Doctors extract bone marrow from Christopher when he is a year old, and give it to Katie. Christopher recovers swiftly. Katie spends several nerve-wracking weeks in the hospital and months on medications; she is then pronounced cured.

The Match is based on in-depth reporting that is all too rare in our blog-soaked world, and gives a textured sense of context to ethical dilemmas that are too often approached in the abstract. It is a moving story with sympathetic characters and a happy ending. In the hands of a less skilled writer, its narrative arc could have precluded any consideration of the controversies posed by savior siblings and by the use of PGD for less compelling purposes.

But Whitehouse includes numerous reminders of the queasiness that many experience – and should experience – about creating a child so that its body can be mined to treat another, even if in some cases we agree that it should be done. She interviews reproductive endocrinologists who refuse to select embryos for "non-medical" reasons. She talks to bioethicists and social critics about the concerns posed by current and prospective uses of these powerful tools (including yours truly). She quotes the mother of a "savior sibling," herself concerned about the potential for abuse of PGD, who says, "The government should look at it and put some kind of boundaries and barriers." She explains what's problematic about using PGD for sex selection. She highlights the notorious 2009 fertility clinic offer to use PGD to select future children's eye color, hair color and skin color.

The Match invites us to identify with Katie and her family, to admire their fortitude, and to celebrate their success – while confronting head-on the social and ethical pitfalls on the road that reproductive and genetic technologies has built.