Delicate Decisions Assisted reproductive technologies raise complicated questions for Christians —about faith, about suffering, and about compassion. By Ellen Painter Dollar During her third summer of life, my oldest daughter had three broken bones—a broken arm in June, a broken tibia in July, and a broken femur in August. The thing we had most feared since Leah’s birth was now happening. I was simultaneously devastated and oddly relieved. I no longer had to wonder when my fragile girl would start breaking. Leah has osteogenesis imperfecta (OI), a dominant genetic disorder causing a collagen defect that leads to brittle bones and other musculoskeletal problems. I have OI too, and any child of mine has a 50 percent chance of inheriting the disorder. For her first two years, Leah had no fractures, although she had gross motor delays related to muscle weakness. On her second birthday, she broke her tibia while climbing on a childsized couch, purchased to give her a safer alternative to climbing on the regular couch. I could not make up a better introduction to the capricious nature of the disorder we live with. Then, when she was two-anda-half came our terrible summer of one fracture after another. We felt bulldozed by her genetic destiny, and my genetic legacy. Also during that difficult summer, my husband and I were contemplating whether to use preimplantation genetic diagnosis (PGD) to conceive another child. PGD involves doing a round of in vitro fertilization (IVF) and testing fertilized eggs for a particular mutation. We could test for my and Leah’s OI mutation, only select fertilized eggs that did not have the mutation, and thus guarantee a 14 GeneWatch
child with strong bones. Such a guarantee was appealing, especially given how we were captive to the pain of life with OI that summer. For many who debate the merits of rapidly evolving reproductive and genetic technology, PGD is a clear positive advancement. Two pioneers of PGD, Anver Kuliev and Yuri Verlinsky, labeled the technology a type of primary preventive medicine. For me, mired in caring for a fragile child spending her summer encased in various pink fiberglass casts, considering PGD as a straightforward means to rid my family of a painful malady was both appealing and practical. And yet I was haunted that summer, even when we actually began a cycle of PGD (three days after our daughter broke her femur), by the sense that PGD is not quite so straightforward, not quite such a clear and obvious good. I obsessed far more over ethical questions, many of them related to my Christian faith, than I did over the taxing logistics of an IVF/PGD cycle. And I found that few people in my Christian circles, including friends and pastors, had any idea what questions we should even be asking, much less how to answer them. In American Christianity, the Roman Catholic Church stands alone as having addressed the ethics of reproductive technologies—from contraception and artificial insemination to PGD and surrogacy—in depth. As I wrestled with our decisions around PGD, I corresponded with a good friend who is a Roman Catholic theologian specializing in sexual ethics. He introduced me to the essential
ideas behind Catholic rejection of nearly all reproductive interventions, including PGD. Put in simplest terms, Catholic reproductive ethics are based on a beautiful theology of marriage: When a man and woman become one flesh through marriage and conceive a child, their love is literally creating new life. Anything that interferes with or engineers this divinely given privilege is problematic. There is much more to Catholic reproductive ethics than that of course, including concerns over introducing third parties into the marriage contract (through gamete donation and surrogacy, for example), commodifying children (transforming them from gifts of God received with open arms to products manufactured by fertility clinics to meet parental standards), and manipulating or destroying human embryos. While many of my Catholic friend’s arguments (which were offered with an assurance that he would honor whatever decision we made) were appealing, my practical nature kept interfering. It’s lovely to imagine that all children are created in love and welcomed with open arms, but even lousy, adulterous, or criminal sex can lead to conception. And the desire to have a child or not, or to have a healthy child rather than one with a genetic disorder, often reflects pressing practical concerns (such as money) and/or an utterly human desire to spare one’s children from suffering, rather than parental wishes to order up a certain kind of baby when and how they want. Also, I’m not Roman Catholic. I August-October 2013