Why Episcopalians need to care about reproductive ethics: My story

By Ellen Painter Dollar

If the title of my post has you concerned that you will be subjected to a treatise on the politicized, polarizing topic of abortion, I hope you’ll stick with me anyway. Reproductive ethics go far beyond pro-life/pro-choice debates. They also address the rapidly expanding, increasingly accessible and highly lucrative field of reproductive and genetic technology. Beyond that—and the main reason Episcopalians and all Christians should pay attention to this topic—reproductive ethics touch on fundamental questions of our identity as human beings made in the image of God and loved by God just as we are, how our sacred and secular cultures provide (or don’t provide) hospitality to people made in God’s image, and how we welcome children into our families, churches and communities.

Still with me? Good! You may be wondering why I’m writing about this topic—who I am and my professional background. Pastor? Theologian? Ethicist? Doctor? Genetic counselor? Nope, nope, nope, nope, and nope. I am a writer who focuses on reproductive and genetic ethics on my Choices That Matter blog, and I am writing a book that will be published by Westminster John Knox Press in 2011. But though I have some skill at putting words to paper, I write about reproductive ethics primarily because I have a story—a story that led me to ask wrenching, sometimes unanswerable questions of myself and my God, and then led me to read everything I can get my hands on about how people of faith have answered those questions. So I’ll start there—with the story.

My 10-year-old daughter and I have had, between us, about four dozen broken bones. We have a genetic bone disorder called osteogenesis imperfecta (OI), which causes fragile bones, short stature, bone deformities, spinal curvature and generalized weakness. We have the mildest type of OI; babies with more severe types are often born with dozens of fractures, and one form is fatal shortly after birth. But even relatively mild OI is no picnic. In addition to about 35 broken bones, I’ve had more than a dozen surgeries to insert and replace metal rods to stabilize my leg bones, and now, at 41 years old, I live with chronic pain as my joint cartilage, worn down by years of my uneven gait, falls to pieces. My daughter Leah, who inherited OI from me, broke her first bone on her second birthday, and since then has had nine more fractures. Two resulted from a scooter accident, but the others came about in the most ridiculously mundane ways possible. She slipped on a piece of paper, fell while dancing in her sister’s room, even broke a leg mid-stride—the leg broke and then she fell, not the other way around.

Because OI is an autosomal dominant genetic disorder, any child of mine has a 50 percent chance of inheriting it. My husband and I started contemplating having another child just as Leah was going through a cycle of six fractures between her second and fourth birthdays. She was encased in a series of pink fiberglass casts for an entire summer. So while we knew we wanted more children, we were intimidated and heartsick at the idea of having another child who would suffer as she was suffering (and, let’s be honest, we were suffering too, and it was no fun). We decided to look into preimplantation genetic diagnosis (PGD), which is in vitro fertilization (IVF) with the added step of testing fertilized eggs for a particular genetic mutation.

In September 2002, three days after Leah broke her femur (thigh bone) when she slipped on a picture book left on the floor, I started injecting myself with hormones to launch our IVF/PGD cycle. About six weeks later, we learned that the cycle had failed. I was not pregnant. We planned to try another PGD cycle in a few months. But before we got the chance, I discovered in late January 2003 that I was already pregnant. Our second daughter, Meg, was born in October 2003, and we had a son, Ben, in 2006. Both were conceived naturally, and neither has OI.

But even before I discovered my unexpected pregnancy in January 2003, we were leaning toward abandoning the second PGD cycle. We were emotionally exhausted and financially drained. More important, I was increasingly uneasy with the ethical implications of our using reproductive technology to produce a child without my bone disorder. My brain was swimming with hard questions about using reproductive technology in light of my Christian faith: Was it ethical to spend thousands of dollars to prevent our child from inheriting a disabling but non-life-threatening disorder? By allowing embryos with my OI mutation to be destroyed, was I committing murder? By ensuring that my child would not be disabled, was I contributing to a culture that would eventually become intolerant of, and refuse to care for, children who are disabled? Was my sense that God was calling me to biological motherhood authentic, or just a way of cloaking my selfish desires in a spiritual mantle?

In my search for guidance and support, I discovered that the Episcopal Church, and Protestant Christianity in general, are not well-equipped to counsel someone like me. This is, of course, a generalization. There are certainly individual clergy who could provide excellent ethical discussion and pastoral support. Indeed, our own pastor asked some good questions of us. Though his knowledge of the ethical issues involved was limited, his pastoral concern and acceptance were abundant. But for the most part, the Protestant clergy and laypeople we talked with seemed uncertain of what questions we should even be asking about reproductive ethics, much less what the answers might be.

The progressive Religious Institute recently issued a report confirming that, due to lack of training and education, as well as discomfort with issues related to sexuality and the controversy they stir up, clergy and other religious leaders are often ill-equipped to engage topics of sexual justice and ethics, including reproductive ethics. In a 2009 report specifically addressing assisted reproduction, the Religious Institute noted that, “Unfortunately, these topics are usually not addressed in seminaries, and if they are, it is likely in the context of a medical ethics course that does not engage the pastoral issues that religious leaders will face.”

The exception to this is, of course, the Roman Catholic Church, which has plenty to say about reproductive ethics. In the past 18 months alone, the Catholic Church has released two major doctrinal statements clarifying and expanding on their opposition to all forms of assisted reproduction and genetic screening. The 2008 encyclical Dignitas Personae came directly from the Vatican, while last fall, the U.S. Catholic bishops released their own document, titled Life-Giving Love in an Age of Technology. Both documents provide extensive explanation of the theology, reasoning and ethical concerns behind the church’s position.

In contrast, the Episcopal Church has released three very brief, very general resolutions: A 1982 approval of the use of IVF to conceive children within a marriage; a 1991 resolution urging couples considering IVF to get counseling and consider adoption as an alternative; and a 2003 statement that genetic screening is appropriate for avoiding “clearly serious” disorders, and that human cloning is unacceptable. Well, I guess that’s something. But it’s not enough, given the complexity of reproductive ethics, and the fact that, as reproductive technology evolves, more and more people sitting in the pews of our Episcopal churches will be facing decisions about whether or not to use it.

As I research reproductive ethics for my book and blog, the most consistent and informed sources tend to be Roman Catholic. In fact, the person who ended up being most helpful to me and my husband in making our decisions was a good friend who also happens to be a Roman Catholic sexual ethicist. He and I disagree—vehemently in some cases—on the answers to some difficult ethical questions. But he, my other Catholic friends, and the Roman Catholic web sites and bloggers I follow have been my most valuable resource. I may not always agree, but because the Catholic Church gives priority to reproductive ethics, these resources are generally well-informed and thoughtful—two qualities especially important when discussing the emotionally charged questions of whether, why and how people should have babies.

In writing about reproductive ethics, I am not aiming to convince anyone of a particular position. In fact, I am still working out exactly what my position is. Rather, my aim is to convince people—especially my fellow Protestant believers—that reproductive ethics are worth talking about seriously so that people who have to make difficult reproductive choices do so with the guidance of their brothers and sisters in Christ, within a supportive community responding with common values.

In Part 2 of this series, I’ll review the Roman Catholic position—whether you agree with it or not, their position lays out some important questions and provides food for thought—as well as summarize both Protestant and Jewish approaches to reproductive technology. I’ll finish up in Part 3, with a brief discussion of the major ethical questions raised by reproductive technology, and recommendations for moving the discussion forward in our Episcopal congregations. I hope you’ll stick around, because all of us, both clergy and laypeople, are vital partners in providing loving, supportive, knowledgeable counsel to people struggling with complex reproductive decisions.

Ellen Painter Dollar is a writer whose work focuses on faith, parenthood and disability. She is writing a book on the ethics and theology of reproductive technology, genetic screening and disability, and she blogs at Choices That Matter and Five Dollars and Some Common Sense.

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