The undeniable beauty of some uses of technology can mask deep bioethical problems.A monstrous use of technology does not always yield monsters. A cloned human being can be just as beautiful, charming, and intelligent as one which nature produces. Alas, all the more easily can we be seduced by the powers of technology. As we see in the case of Amanda Kalinsky, her husband, Bradley, and their three children.
As reported earlier today by the New York Times, Amanda Kalinsky is dying of a rare neurological malady known as Gerstmann-Straussler-Scheinker disease (GSS), a horrific disorder that leads to a slow and painful death. GSS runs deep in the gene pool of Ms. Kalinsky’s family. Her great-grandfather, great-aunt, uncle, father, and cousins all died from it. As the Times describes the future effects of the disease upon Ms. Kalinsky: “Sometime between her mid-30s and her mid-50s, Ms. Kalinsky, who is now 30, will begin to stumble like a drunk. Dementia will follow, and possibly blindness or deafness. Five years after the onset of symptoms, she will most likely be dead.”
Upon first learning that she had inherited the disease, Ms. Kalinsky vowed that she would never have children. But then, after her marriage to Dr. Kalinsky, the prospect of being able to produce with him GSS-free children using in vitro fertilization (IVF) techniques, changed her mind. The process was the following: embryos were created in a petri dish using her eggs and her husband’s sperm, and the resultant embryos were then genetically tested to see which ones might be carrying GSS. Only those embryos judged to be GSS-free were implanted in Ms. Kalinsky’s uterus.
Today the Kalinskys are the happy parents of three lovely children: twin 3-year-olds, Ava and Cole, and 9-month-old Tatum.
But preimplantation genetic diagnosis–or what might better be called genetic “screening”–raises deep ethical questions. The Times article focuses on questions surrounding the discarding of embryos. “When are prospective parents justified in discarding embryos? Is it acceptable, for example, for diseases like GSS, that develop in adulthood? What if a gene only increases the risk of a disease? And should people be able to use it to pick whether they have a boy or girl?” David Wasserman, an ethicist at Yeshiva University and consultant to the department of bioethics at the National Institutes of Health, told the Times that “eliminating embryos with [genes carrying diseases that do not trigger until adulthood] is essentially saying someone like Ms. Kalinsky should never have been born.”
All told, the Kalinskys created 12 embryos through in vitro fertilization, discarding 6 that were failed the genetic screen for GSS. “That was a really hard thing to do,” Ms. Kalinsky told the Times. Yet she preferred destroying embryos in the lab than later by abortion. “For me, destroying a fetus that is already growing inside of me was much different than discarding embryos that had not yet implanted.”
No doubt, destroying a human embryo in a lab is far easier than by abortion, because the lab is that much further removed from the natural setting of human gestation: a mother’s womb. But either way, Ms. Kalinsky and her husband were prepared to destroy human embryos, beings with the same potential that Ms. Kalinsky once enjoyed, because they were no longer of any use to their plans to start a family. It will be argued: they were only saving these children from a life yoked to a dread disease. But the life of Ms. Kalinsky herself, however short it may be and painful in its ending, refutes this argument. As Professor Wasserman challenges us: even with a dire prospect before her, the world would not have been better if Ms. Kalinsky had never been born. Nor is the world better now that six of the Kalinsky children have been discarded.
What the Kalinskys have been pursuing is what the Catholic Church calls “homologous artificial insemination and fertilization” (homologous IVF). It is distinguished from “heterologous” IVF, which involves the dissociation of husband and wife by the interjection of a person other than the couple to donate a sperm, ovum, or surrogate uterus. The Catechism of the Catholic Church calls heterologous IVF “gravely immoral.” Homologous IVF it says is “perhaps less reprehensible,” but remains “morally unacceptable” (see Catechism, nos. 2376-2378).
The reason comes down to the sundering of the sexual act from the procreative act. As the Catechism explains it: “The act which brings the child into existence is no longer an act by which two persons give themselves to one another, but one that “entrusts the life and identity of the embryo into the power of doctors and biologists and establishes the domination of technology over the origin and destiny of the human person. Such a relationship of domination is in itself contrary to the dignity and equality of that must be common to parents and children.”” (The Catechism quotes here from Donum Vitae, a 1987 instruction by the Congregation for the Doctrine of the Faith, then headed by Joseph Cardinal Ratzinger, on the origins of human life).
Domination is the key word here. The children the Kalinskys have produced are undeniably in possession of full human dignity. As Donum Vitae affirms: “Although the manner in which human conception is achieved with IVF…cannot be approved, every child which comes into the world must in any case be accepted as a living gift of the divine Goodness and must be brought up with love.” And the desire the Kalinskys had to raise a family is certainly legitimate and understandable. But the way they chose to bring children into the world did not respect their children’s dignity, nor their own. The Kalinskys wanted children. They wanted children possessing no serious genetic defects. They found a technology that would help them achieve this, and they pursued it without appropriate concern for the nature of human sexuality and its relationship to children. Instead of regarding children as a gift, a gift no human being is ever owed, they took nature as raw material to be shaped to their ends, with the excess discarded.
Photographs of the Kalinskys at home with their children may not be chilling. But a closer look at what actually occurred to bring this family about most certainly is.
Daniel McInernyis the editor of the English edition of Aleteia. You are invited to contact him at daniel.mcinerny@aleteia.org, find him on Facebook, and follow him on Twitter: @danielmcinerny.
