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.