Ellen's Story
Ellen Painter Dollar has a compelling story to tell. Suffering from a genetic bone disease (Osteogenesis Imperfecta - OI) which has left her body twisted and scarred from numerous broken bones and surgeries for pins and plates, Dollar knew from an early age (8 years old) that motherhood had a deep call on her life. In the most affecting passage in the book, she displays a remarkable understanding of parenthood as a vocation and the responsibility of Christians:
Understanding parenthood as a vocation also means that Christians must consider bearing and rearing children within the context of God's intentions for marriage. In tradition Christian theology, sexual intercourse and procreation are God-given and necessary components of marriage. That sex and procreation were designed to go together may seem to be an obvious fact, not even worth mentioning, except when one considers what happens when sex and procreation are separated, as they are in assisted reproduction. (49)
The potential commodification of children that arises from the separation of sex and procreation is also a major concern, as is the Catholic Church's belief that from the moment of conception, embryos are fully human, with all the rights of a human being and created in God's image. (50)
Having a genetic mutation which leaves you with a body that betrays, one that breaks simply sitting down on the floor or stepping off a curb funny is not the way things are supposed to be. It is the natural wish of parents to spare their children known physical and emotional suffering. I applaud Dollar's courage in embracing her calling as a mother. There can be no doubt that it took tremendous courage to marry without considering surgical sterilization, and to welcome the possibility that she would find herself shepherding children through the same physical and emotional turmoil she faced.
She also showed a great deal of courage in choosing to tell her story publicly, on blogs and now in a book. She was going to be criticized no matter what choices she made about childbearing. Unfortunately, in between the choices she and her husband made to welcome children into their family who were conceived naturally, they made a detour into Assisted Reproductive Technology (ART). It is this journey and the choices they made that form the basis of the book and the reason she tells her story.
Choices Unmoored
Dollar presents herself as a narrative ethics writer and the book blurb says in part, "Dollar's story will help parents who want to understand and make good decisions about assisted reproduction as well as those who support and counsel them, including pastors and medical professionals." And yet Dollar's presentation of narrative ethics is idiosyncratic and the book utterly fails to provide any rubric for decision-making. In addition, medical professionals will find it fundamentally dishonest on key points.
In her explanation of narrative ethics, Dollar repeats last summer's theme that narrative ethics in accessible to the masses while more traditional ethical systems are only accessible to the professionals. In an effort to present narrative ethics to the average man, she creates her own version:
Narrative ethics strives less for a clear-cut decision about which choice is morally superior, and more for consensus on which choice seems best in the context of people's stories. (144-5)
There are inherent problems with such an approach: It is difficult to come up with a decisive answer about what is right, and those wrestling with an ethical question can be swayed by their personal feelings about the people involved. (145)
Deciding which story to believe requires an informed community of listeners who help the parents uncover their motives and assumptions. Narrative ethics is more about deliberate, informed , and supportive conversation than the dispensing of authoritative opinion. (146)
Instead of this view, Narrative Ethics at its best does aim at a normative way of life for individuals in the Christian community. Christ's story comes first and is the context through which our own stories are to be read and through which we come to understand their meaning. What Dollar presents here is dangerously close to situation ethics and might more accurately be termed an ethic of consensus. For a serious treatment of narrative ethics from a Christian perspective, see Richard Hays, The Moral Vision of the New Testament.
Because Dollar's use of narrative ethics is rather idiosyncratic, it leaves her untethered, unmoored from any transcendent ethic, no way to adjudicate between competing stories, there is no sense of any intrinsic limit to our use of ART and we are left with the sense that everything is permissible so long as we don't violate some imagined community consensus or breach an ethereal "ick" barrier. For instance, Dollar present us with no way to understand why her use of ART/PGD may have been acceptable while the use of an Indian woman as a gestational surrogate may not be.
Dollar denies the possibility of a metanarrative in her rejection of more juridically focused ethical systems, such as Catholic moral theology. In fact, much of the book seems to pay more attention to secular media and secular views than it does to Christian sources. At points it reads as if Christianity is simply one more source, one more tool for helping us make decisions that are good so long as we stop and think about it and don't violate that community consensus. While she pretends to have respect for Catholic teaching, she evinces little understanding of it and waves much of it away with a criticism about language and the use of words such as "illicit" (which word she dismisses as being more appropriate to the relationship between a Congressman and a highly paid escort!).
Eugenics Whitewashed
PGD doesn't cure genetic disorders; its successful use merely ensures that children with particular genetic disorders are not born, which is a significantly different endeavor. (148)
Indeed, it is.
Dollar asks if PGD is a new eugenics. In an effort to convince us that it is not, even though she does express some concerns about the devaluing of certain human lives, she engages in a bit of historical revisionism. Associating the practice largely with the Nazi regime, and ignoring that fact that Hitler learned about it from Margaret Sanger, she dismisses it as a pseudo-scientific practice which we can be assured is not the case with PGD because it relies on "scientific fact".
In fact, Eugenics is the practice of improving populations by controlled breeding. It can be practiced in two ways: Positive Eugenics is the increased reproduction of positive traits where Negative Eugenics works to reduce the reproduction of negative traits. While Dollar does try to discredit Eugenics as merely the pseudo scientific practice of the Nazi regime, it has a long and varied history. At times it garnered the support of luminaries such as Teddy Roosevelt and Winston Churchill. While early eugenicists such as Margaret Sanger may have been primarily concerned with race and social status, it has also long been concerned with the elimination of certain heritable diseases such as Huntington's and Sickle diseases.
But science progresses and a generation after the birth of the first "test tube" baby, the process of pre-implantation genetic diagnosis (PGD) is entering the public consciousness. PGD is a highly technical form of eugenics that can be used to promote positive eugenics (selecting for a desirable trait) or negative eugenics (selecting against an inherited disease such as OI).
Redefining Life
In her effort to help people tell and think through their stories, in spite of the book blurb which promises help in making good decisions, Dollar steadfastly refuses to give direction, to ascribe to any sort of metanarrative or foundational belief about life. She appears to be utterly ignorant of the necessary place anthropology plays in such conversations and even says the moral status of the embryo is not her primary concern. While I would certainly agree that it is not the only thing to consider, we simply cannot discuss the permissibility of various ART practices until we understand what it is we are discussing.
... I've concluded that making one's view of embryonic life the central concern in reproductive ethics is potentially misleading and overly simplistic ... (111)
Efforts to name embryos as fully human beings seem to ignore some of the fundamental truths of pregnancy and birth. Human technology has not yet found a way for even the healthiest fertilized eggs to become babies without a woman's womb. I wonder if this is not merely biological fact but also a hint that our human identity is rooted in relationship ... We can, literally, not become human without an early and fundamental connection to another person... (118)
When does life begin? We can't really know from a scientific perspective. (119)
On the contrary, we do know that at conception, at union of sperm and egg, a new genetically unique human person comes into existence. There is nothing else it can be but human, fully human. The only difference between the fertilized egg, the blastocyst, the embryo, the fetus, the infant, the child and the aged grandparent reminiscing about life in the old country is age and development. You are one unique human person from the moment of conception until your death.
Scientists and ethicists have long recognized this fact. For further information on this point see the document, When Does Life Begin? by the Association of Pro-Life Physicians and When Does Human Life Begin?, a white paper from the Westchester Institute.
Conclusions
Ellen Painter Dollar's story is deeply moving, but when she attempts to move into the sphere of ethics, her efforts are deeply and fatally flawed. She appears to want to dismiss some ethical principles because people don't consistently apply them. One example is her treatment of the way some ignore pregnancy loss, not treating the baby as fully human. Here she seems completely unaware of how some Christians and their communities are dealing with pregnancy loss. Although it happened after the book was written, the Duggar's funeral for their last baby was a very public example of a family mourning the loss of one of their own. Republican Presidential candidate Rick Santorum and his wife Karen have a similar story about the death of their son Gabriel and how they took him home so his brothers and sisters could meet him before he was buried. Even so, the inconsistent application of a moral principle does not negate the validity of that principle.
The book fails in its central purpose of offering guidance for the decision-making process. Couples looking for guidance will find none. At the point at which this guidance might be offered, Dollar retreats behind her conception of narrative ethics and wants us to believe a community can come to a better decision than individuals -- even though neither the individual or the community has a rubric through which to work their way toward making a wise decision.
After quoting from Psalm 139, Dollar writes this:
The idea that God has known and loved us always, from the moment we were conceived, can be tremendously comforting. (117)
If only Ellen Painter Dollar had owned that truth, had wrapped herself in its comfort, she might have pursued a different course with respect to PGD and the three embryos determined to carry OI. And she would have had a different story to tell.
For additional reading, I recommend:
Embryo: A Defense of Human Life 2nd edition by George and Tollefson
Humana Vitae, a foundational papal encyclical for understand issues of procreation. It is interesting to note that while Dollar refers to some Roman Catholic documents, she ignores this seminal work on the topic.
Addendum: My brother in the faith, Tim Bayly, has responded to No Easy Choice telling of his family's Simple Choices to embrace love and the children God sends.
1 comment:
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