Thursday, August 12, 2010
This piece ran today in the Jewish Daily Forward.
By Laurie Strongin
Ten years ago, the first-ever bone-marrow transplant was performed using the umbilical cord blood of a baby deliberately selected and implanted through a combination of in-vitro fertilization and genetic testing to save the life of his older sibling.
The embryo-screening procedure known as pre-implantation genetic diagnosis, or PGD, had previously been used to enable parents who were carriers of deadly childhood diseases like Tay-Sachs to knowingly get pregnant with healthy babies. But the birth of Adam Nash in August 2000 marked the first time that the procedure was used to produce a disease-free baby who would also be a perfect bone-marrow donor. Adam saved his sister Molly’s life through the risk- and pain-free donation of stem cells from his umbilical cord, which would otherwise have been discarded as medical waste.
Reaction to the news of the first so-called “savior sibling” was swift and wide-ranging. Doctors, bioethicists and religious leaders, as well as families facing the premature death of their young children, voiced opinions ranging from enthusiastic support for this life-saving medical breakthrough, to concern over the potential for its abuse, to calls for it to be banned. Mine was among the voices of support. But it wasn’t the first time I had advocated for PGD.
My son Henry was born with a rare, inherited Jewish genetic disease, Fanconi anemia, which neither my husband, Allen Goldberg, nor I had ever heard of before. Among the first things we learned about FA was that it had the impossible-to-accept label “fatal.” The only hope for Henry was a bone-marrow transplant, which he was expected to need before he reached kindergarten. In 1995, when Henry was born and diagnosed with FA, transplant survival rates were dismal. In fact, no one with Henry’s type of FA — the type that occurs in the Ashkenazi Jewish community — had ever survived a transplant without a perfectly matched sibling donor.
Henry’s diagnosis was a shock. Like many Ashkenazi Jews, Allen and I underwent genetic testing prior to getting married to determine whether or not we were carriers of Tay-Sachs. We both tested negative. Since neither of us had any history of genetic disease in our families, we were unconcerned about passing along anything deadly to our children.
But that is exactly what we had done. We had unknowingly given FA to Henry at the same time we gave him brown hair, brown eyes and the absolute cutest dimples I had ever seen. Because Allen and I were both carriers, we had a 25% chance with each pregnancy that we would pass along the same death sentence. We wanted to have several children, but Fanconi anemia made family planning about a whole lot more than love and sex. All of a sudden, it was a complex puzzle of genes, statistical probability, prenatal testing and life-or-death decisions. It wasn’t just about creating life, but about avoiding certain death. Keep Reading