This morning, I linked to my post for her.meneutics in which I reviewed Ellen Painter Dollar’s No Easy Choice: A Story of Disability, Parenthood and Faith in an Age of Advanced Reproduction. As a follow up to that review, I asked Ellen to reflect upon some of the questions her book raised for me:
As No Easy Choice explains, many decisions regarding reproductive technology are not black and white ethical choices, but rather gray areas. Could you give one example of a gray area? Are there any areas within repro tech that you do see as black and white?
For me, the ultimate gray area is the one I focus on in my book—whether or not it is ethical to use embryonic genetic screening (called preimplantation genetic disgnosis or PGD) when a family, such as mine, has a history of a significantly disabling or fatal genetic disorder.
I think it is utterly reasonable and understandable for parents to want their babies to be healthy, particularly if they have firsthand experience of watching a beloved child suffer from and/or die from a genetic disorder. Some people say using this technology amounts to eugenics, the selective breeding of more “desirable” humans and eliminating of less “desirable” humans. That’s a terribly unfair accusation. One fascinating fact for me is that Jews, including many conservative and orthodox sources, largely support the use of PGD, especially given that Ashkenazi Jews are more susceptible than other populations to several devastating genetic disorders, such as Tay-Sachs. Jews, of course, understand all too well what it means to be the target of eugenic policies. Yet, they see a difference between large-scale, state-sponsored efforts to rid populations of “undesirables” and a particular couple’s desire to have a baby who won’t die.
On the other hand, I worry that using technology to ensure genetically healthy offspring will become yet another hard-to-resist pressure on modern parents to do everything in their power to produce children who meet cultural definitions of health, success, and productivity. I and my oldest daughter, who inherited my genetic bone disorder, along with millions of other people living with genetic disorders, prove that life can be rich and full even with such disorders. As Christians, of course, we believe that all human lives have value, including the lives of infants and young children who die too soon.
There is great tension between these two ways of viewing genetic screening of embryos. And I have found it impossible to decide that one perspective is clearly the better, more Christian, or more ethical one. The truths evident in both perspectives are too fundamental and significant for me to discard.
One use of reproductive technology that I do see as black and white is the use of PGD for gender selection purely for parental preference. PGD was not developed to create babies to conform to parental wishes. It was developed to free families of the terrible legacy of genetic disease. To me, there is no excuse for clinics to offer PGD for gender selection. Gender is not a disease.
I could be misremembering, but I don’t think you gave any examples in No Easy Choice of women (other than yourself) who opted out of reproductive technology for ethical reasons. Did you encounter women with stories about choosing to forego IVF, PGD, or other repro tech options based upon ethical convictions?
Yes, I’ve actually talked to many a number of women who have opted out of reproductive technology, such as forgoing extensive prenatal testing or choosing not to screen for a known genetic risk in their family. I’m in regular e-mail contact with a woman who has been struggling with infertility for several years. She and her husband are pretty clear that IVF is simply not an option they want to pursue, because of ethical concerns related to their Christian faith. Rather, they have focused on finding practitioners willing to work with them to do everything they can short of technological intervention. That’s not always an easy thing to find. Reproductive technology has become so ubiquitous that often the result of an initial appointment to discuss infertility is a prescription for a first round of fertility drugs and a plan to ramp up fairly quickly to other techniques such as IVF. My correspondent has told me how grateful she and her husband are when they meet with doctors who don’t offer drugs and technology as the first resort, but are rather willing to talk through all the options and take things more slowly.
Our culture highly values happiness and encourages us to do whatever we can to avoid or appease our suffering. Having a baby is a great source of happiness for many adults. Infertility and genetic disorders cause tremendous suffering. Technologies such as IVF and PGD are designed to alleviate suffering and bring about happiness. Many people therefore conclude that these technologies should be beyond question. Culturally, we are often guilty of overextending grace, essentially saying that people should be allowed to do whatever makes them happy, with few or no limits.
Conversely, individuals facing complex reproductive decisions often don’t receive the grace and understanding they so need from their loved ones and faith communities. Their suffering is written off with one of those horrible clichés such as “God won’t give you more than you can handle.” They are told that their infertility must be God’s will. They get unsolicited advice.
Procreative decisions can be extremely difficult and complex, and their consequences are largely lived out in the intimate confines of family homes and human hearts. The church and individual believers could do much better at being graciously present to people in those intimate places, by listening to their stories, praying for them, providing educated counsel, and helping them talk through difficult decisions without judgment.
Each chapter of your book provides questions for discussion, which suggests that this book could (perhaps should) be read in community. What would you recommend church leaders do to foster conversation and provide guidance surrounding reproductive technology and ethics?
First, pastors need to become much better informed about reproductive technology and associated ethical concerns. That needs to happen through a combination of self-education, and better seminary education on procreative issues (including such topics as parenthood as a vocation, adoption, and reproductive technology).
Second, there are many opportunities, through adult education classes, book groups, and speaker events, to engage congregations in conversation around these topics. People don’t need to be of childbearing age to care about reproductive ethics. In fact, some of my best discussions have been with church groups consisting mostly of older people.
Procreative decisions are some of the most personal, intimate decisions we can make. Yet how, when, and whether people have babies also affects the culture significantly (think of the Baby Boom and how it has influenced American culture over the past few decades). So fundamentally, the ethics of reproductive technology is a topic that we all need to care about and discuss, because it has tremendous potential to change our families, communities, and culture, for better or worse.