GENEWATCH
 
DELICATE DECISIONS
By Ellen Painter Dollar
 

from GeneWatch 26-4
Aug-Oct 2013

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 child-sized 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-and-a-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 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 am a lifelong Episcopalian who took a detour of about a decade into evangelical and nontraditional progressive churches. As I discovered while contemplating PGD, Protestant reproductive ethics are practically nonexistent, from a practical standpoint. Protestant theologians and ethicists have written extensively on issues such as prenatal testing and assisted reproduction, but they have largely done so in dense academic language. Such language is off-putting to a layperson like me, not only because it is hard to understand, but also because such language speaks largely to the head, not the heart. And when we are talking about people's babies, we must speak to the heart as well as the head.

Furthermore, in many less-formal conversations around reproductive ethics (for example, on Internet comment boards), many Protestants tend to focus overly on abortion, trying to transfer their pro-life or pro-choice views directly to other reproductive concerns. Decades of divisive, oversimplified debate around abortion have left Christians ill-equipped to engage in effective discourse and empathetic counsel around reproductive technologies such as IVF, prenatal testing, and PGD. They often fall back on well-worn abortion arguments around the appropriate limits on freedom of choice and the moral status of embryos, for example, which are relevant but incomplete.

As we cared for our daughter while undergoing PGD, my heart was hurting and my head reeling with questions that went far beyond the limits of choice and the status of embryos (although those concerns were there too). I was consumed with questions around suffering: Do I have a duty to spare our next child the suffering associated with OI? What about the core Christian idea that suffering (e.g., Christ's death on the cross) can be redemptive (bring about healing and wholeness)? I had questions around money and medicine: What values were driving my fertility clinic's desire for our IVF/PGD cycle to succeed? How did their values compare with ours? And then there were a host of questions around the nature of OI and, more broadly, disability itself: By screening for OI (essentially, rejecting any potential children who might have OI), was I saying that I and my daughter, as people with OI, are less valuable than people with healthy bones? Is OI primarily an illness in need of fixing (or preventing)? Or is it primarily an identity - a manifestation of human diversity that ought to be valued and accommodated, not fixed or prevented?

As we went through the physically, emotionally, and financially draining steps of our IVF/PGD cycle, such questions preoccupied me, but answers were elusive. The day before Leah got the cast for her femur fracture taken off, I took a pregnancy test and learned that our PGD cycle had failed. Two weeks earlier, my doctor had implanted one fertilized egg that tested negative for OI into my uterus, but it did not implant.

The weight of the ethical questions that haunted me, combined with the financial and emotional costs of PGD, was too much. We did not do another PGD cycle. Instead, we conceived another baby naturally. We had another daughter, and a little more than two years later, a son who was also conceived naturally. Neither of them inherited OI.

My Christian faith, and my experience living with OI and raising a beloved child with OI, tells me that suffering can indeed be redemptive. My faith teaches that light can overcome darkness, that life is stronger than death. Hard, painful things can lead to greater wisdom, more abundant compassion, and stronger relationships. But my Christian faith, and my experience, also tell me that illness, injury, disability, and pain can do real damage to the spirit.

I know, from the most strenuous sort of experience, that life with a broken body can be rich, full, and happy. I also know that little girls should not break their legs falling off a child's couch. OI is a menace. I will never stop feeling grateful that our younger two children escaped it. I will never stop grieving that our oldest daughter did not, even as I cannot imagine her being anyone other than the smart, lovely young woman she is becoming, and know that having OI has shaped her.

Since making our childbearing choices, I have told my story to all sorts of audiences, particularly to Christian ones. My husband and I were almost completely alone with the choices we made, not because our Christian friends and pastors didn't want to help us, but because they couldn't. They didn't know how.

I tell my story to raise questions and nurture conversation around the technologies that offer us the potential - a potential both promising and troubling - to bear children free of genetic disorders. I do not share my story in order to tell people the right answers to these hard questions, because I don't know what the right answers are. I do not know whether the choices we made were good or bad, right or wrong. We have the children we have - all three much-wanted, beautiful, imperfect, beloved. We made the choices we made. None of them were easy. 

 

Ellen Painter Dollar is author of No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction. She blogs about faith, disability, parenting, and ethics for Patheos, a web portal dedicated to religion and spirituality.


 
 
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