Article: Savior Siblings: At What Moral Cost?

WASHINGTON, D.C., MARCH 23, 2011 (Zenit.org).- Here is a question on bioethics asked by a ZENIT reader and answered by the fellows of the Culture of Life Foundation.

Q: Could you please clarify the concept of a "savior sibling"? Some argue that a child conceived to save his older brother or sister is "conceived to be used." But the child per se is not used at all, only the child's umbilical cord. Please clarify. Sincerely, D.V.M -- Bellflower, California

E. Christian Brugger offers the following response:

A: Lisa Nash, mother of the world's first "savior sibling," said she would do "anything" to save her daughter's life.[1] Her daughter Molly was diagnosed at birth (in 1994) with Fanconi Anemia, a serious genetic disorder in which patients can suffer bone marrow failure, birth defects, developmental abnormalities, a heightened risk of leukemia and premature death. Lisa and her husband Jack were told that the best way to help Molly was to give her a blood and marrow transplant from a genetically matched sibling. But Molly was an only child. Her parents had been considering conceiving again, but decided against it because of the high probability -- about 25% -- that the child would suffer the same illness.

Then Lisa and Jack were told about pre-implantation genetic diagnosis (PGD), a screening procedure performed on embryos prior to implantation. Embryos are generated in a laboratory using in-vitro fertilization (IVF), then tested for the desired genetic traits; only those that are perfect matches are implanted into a female uterus. "Abnormal" embryos -- or in this case embryos not genetically matched to Molly -- are destroyed.

The Nashes agreed. After four agonizing trials, and the creation of 30 embryos, the Nashes finally got their disease-free child, Adam, an exact blood match for his sister Molly. He was born in October 2000 at Fairview Hospital in Minneapolis. Specialists successfully transferred tissue and blood from Adam's umbilical cord into Molly's body. And his sister's life was saved.

Adam is called a "savior sibling," not because -- as in the Christian use of the term -- he sacrificed his life for another, but rather because he was generated -- was brought into the world -- and selected to provide a life-saving remedy for another. His successful gestation meant the difference between life and death for Molly. After implantation, he was not subjected to disproportionately risky procedures for his sister's sake; his organs were not harvested and his body was not violated to save her; using his umbilical cord after birth was harmless to him. And although he was generated for his sister's sake, we cannot presume his parents do not love him today for his own sake, and care for him as best they can.

Yet the fact remains: 29 human embryos were sacrificed to save Molly. His mother, Lisa, stated in 2001 in an interview with CNN, "That's what we had to do for us; and I would hope that people who felt this was inappropriate would feel it was inappropriate for them and not judge me unless they've been where I've been."[2]

Now nobody would ever wish to be where the Nashes were with their daughter Molly; suffering with a child who suffers from a fatal condition such as Fanconi Anemia. Moreover, we cannot scrutinize the level of knowledge or measure of culpability of other people in doing the things they do. In this sense, we should not attempt to judge Lisa Nash's conscience.

But, we can and must make judgments about the objective morality of certain kinds of actions and condemn those actions that are objectively wrong. Moral disapproval of the eugenic selection of IVF embryos using PGD does not principally concern a 'feeling of inappropriateness.' It concerns a judgment that creating and killing human embryos for the benefit of others is always gravely wrong.

Dangerous road

All the endless rationalizing about embryos not being human, or not yet fully human, or not persons, or lacking moral worth, or not being 'like us,' have paved a dangerously tempting path for people in crisis situations to travel down. We unblinkingly focus on the benefits promised at the end of the path and avert our eyes from the monstrous injustices caused to human embryos.

Moreover, bringing a child into the world, not for his own sake but for the benefit of another treats him as a means to an end; it instrumentalizes him. This violates the moral requirement of the natural law (articulated in Kant's "Categorical Imperative" and Karol Wojtyla's "Personalistic Norm") directing that we treat other persons -- precisely because they are persons -- always as ends in themselves. The fact that a "savior sibling" may be loved and cherished after his utilitarian purpose has been served does not erase the wrong done to him in creating him for another's benefit.

Some believe this latter argument is speciously abstract. If parents intend to love the "savior sibling" as much as his older sibling, no harm, and therefore no wrong, is done to him. I would agree only this far: If parents already intended to have another child, conceived the child in licit ways, and then utilized the child's discarded umbilical cord to save another, then certainly there is no wrongdoing in this.

But parents who envisage another pregnancy precisely for the purpose of benefiting one of their other children; and who initiate the pregnancy for that purpose -- even aside from the problems of IVF and eugenic selection of embryos -- have harmed and done wrong to their child. They wronged him by not bringing him into the world as the subject of a loving communion between themselves and the child, but in the context of a relationship of "maker" to "thing made," as a useful (indeed very useful in the case of "savior siblings") instrument to serve their purposes. "But what noble purposes!" the Utilitarian always cries. Indeed, but at what moral cost?

Can anyone doubt that if after two week's gestation (or four, six, eight, 15, 22, etc.), the doctors told the parents that the only way to save the older sibling was to terminate the pregnancy and to culture the embryonic/fetal tissue for creating a life-saving serum, the parents -- having initiated the pregnancy for an instrumental purpose -- would seriously contemplate abortion. Is there any doubt that some, perhaps many, would -- in their desperation for results -- consent to the repugnant alternative? If embryos are considered disposable before implantation, what logic secures their inviolability after implantation?

Dead end

We've come a long way down this dead-end street. Today we generate embryos in vitro, grow them in Petri dishes, biopsy them, select the ones that please us most, mail them to India to be gestated, freeze them and earmark their frozen bodies for a variety of future uses; and when we no longer feel they are useful to us, we magnanimously donate them to science or flush them down the sink.

But since we all were once embryos, and in relation to the fullness of life in the Kingdom for which Christians hope, we are right now in an embryonic kind of existence; when we dehumanize them, we dehumanize ourselves and everyone else.

Can the genie ever get back in the bottle? Can we humanize the embryo in the minds of our neighbors and associates? Only with difficulty. If we've dehumanized the fetus to nine months, defending embryos will be onerous.

But encouraging signs are afoot. Just last week, the Oklahoma House passed a bill (HB 1442) that would prohibit embryo-destructive research in the state, and the Minnesota legislature is moving ahead with a bill to prohibit the cloning of human embryos, including so-called "therapeutic cloning."

In the meantime, we can always ask those tempted to run rough shod over our little brothers and sisters, "If you were an embryo, how would you want to be treated?" You know, the Golden Rule and all that.

NOTES

[1] For more information, see http://news.minnesota.publicradio.org/features/200010/18_scheckt_babies

[2] For more information, see http://articles.cnn.com/2001-06-27/health/embryo.testing_1_genetic-diagnosis-genetic-testing-genetic-defect?_s=PM:HEALTH

* * *

E. Christian Brugger is a Senior Fellow of Ethics and director of the Fellows Program at the Culture of Life Foundation; and the J. Francis Cardinal Stafford Chair of Moral Theology at St. John Vianney Theological Seminary in Denver, Colorado.