Monday, June 29, 2009

Having a Child to Save a Life

The movie “My Sister’s Keeper” opened this weekend — a tale about a family who conceives a second daughter in order to save the life of their first.

It begins based in fact — the family uses pre-implantation genetic diagnosis, or PGD, to create embryos that are each screened for their suitability as a bone marrow donor. Only those that are perfect matches are transferred back into the womb.

That first part of the story is one I know well. I wrote a magazine piece years ago about the families who seem to form the seed for this movie (and for the book, by Jodi Picoult, on which the movie is based.)

Called “The Race” my article was about two families whose children were both born with a rare blood disease called Fanconi anemia, and who both made the same desperate try for a baby — with very different results. The Nashes succeeded with the new technology — and their daughter, Molly, had a successful marrow transplant with cord blood from the placenta of her baby brother Adam (the baby himself was not touched during the procedure.) The Strongin-Goldbergs, in turn, had nine unsuccessful invitro attempts, and finally had to use marrow from an imperfectly matched unrelated donor to treat their son Henry, who was running out of time. He died of graft vs. host disease at the age of seven. (Allen Goldberg has written about Henry for Motherlode, and you can read his guest post here.)

So I know firsthand the lives that depend on this very real science. And it is why, if the movie follows the book, I worry about the part that comes next — the part that is fictional and false, that might taint how viewers come to feel about PGD.

As Picoult’s tale unfolds, increasingly intrusive sacrifices are asked of the youngest daughter. At first it is just her cord blood at birth, painless and, to my mind, completely justified. Eventually it is her kidney that is needed, and in a completely unbelievable turn of events, the parents go to court to demand this over the young girl’s objections.

One of the reasons that the Strongin-Goldberg family lost Henry was because research on PGD was stalled for a year and a half in the middle of their attempts to use it — stalled by government officials who called it stem cell research, and who feared a slippery slope, and designer babies, and parents who use their children for spare parts. Had this family not lost those 18 months of research time, their real life story might have had a different ending.

My fear is that “My Sister’s Keeper” might leave the impression that the possibility of misuse of this and similar technology is reason to object to its use entirely. There are any number of reasons that lead couples to have a child — to save a marriage, to make the grandparents happy, to perpetuate the family name, because birth control failed.

Saving a life, with a few ounces of cord blood that would otherwise be thrown away, sure sounds like a pretty good reason to me.