In a recent article in The New York Times, Gina Kolata profiled the story of Amanda Kalinsky, a 30-year-old with a rare and deadly neurodegenerative disease.
Gerstmann-Straussler-Scheinker syndrome (GSS) is inheritable and found in only a few families around the world. Onset of symptoms begins between the ages of 35 and 55 with ataxia (lack of muscle coordination). As this symptom worsens, dementia develops, often with concurrent blindness and deafness. On average, GSS leads to death within 5 or 6 years. There is no cure.
The horror of this disease is apparent and Amanda’s story is heartbreaking, but in her life there exists a beacon of hope—her children do not have GSS. For someone who has seen this disease affect multiple generations of her family, the prospect of having children that will be free from the pain and terror of GSS is beautiful.
An increasingly utilized technology called preimplantation genetic diagnosis (PGD) made this possible for Amanda’s children. A combination of reproductive and genetic technologies, PGD employs in vitro fertilization to form embryos, followed by genetic analysis to determine the presence of certain genes—in this case the GSS gene. The Kalinskys’ children are the result of the implantation of embryos without the GSS gene.
With a story like Amanda’s, it is easy to see the upside of PGD. Not only is Amanda able to be a mother to healthy children, but there is also one less family in the world that will keep the GSS gene in the gene pool.
But as with most medical technologies, PGD comes with ethical implications.
Since its inception in the early 90s, PGD has primarily been used for severe and irreversible genetic conditions (like GSS). With an increased knowledge of the human genome, however, has come expanded employment of PGD.
As mentioned in the article, bioethicist Janet Malek takes the radical stance of the moral necessity, not just the moral permissibility, of PGD. She argues that the law should impose a “duty on IVF-reproducing parents to maximize the well-being of their future offspring by all reasonable means.”
Few bioethicists take this stance. Rather, many take a more cautious approach and attempt to appreciate the nuances of individual situations.
For example, what about genes that increase the likelihood of breast cancer? Often it will be 40 or 50 years before diagnosis, and even then breast cancer is not guaranteed. Would PGD be appropriate in that situation? The British Human Fertilization and Embryology Authority (HFEA) thinks so—it approved this case in 2007. In The Washington Post Ronald Green points out that this distinction of likelihood vs certainty represents a “bright line” for medical ethics. It just might be the line that separates legitimate medicine from the morally problematic quest for the “perfect baby.”
It is misleading, however, to call this distinction a “bright line.” It is rather a dim, blurry line that separates the use of PGD for severe medical conditions and PGD for diseases with varying degrees of susceptibility.
Green doesn’t think there is a problem with this expanded utilization of PGD, and he even gives hypothetical examples of the selection for embryos without obesity genes or dyslexia genes.
This freer reign to genetic manipulation alarms some, including William Saletan over at Slate. Commenting on the article about Amanda, he says that personal experience often teaches us valuable lessons about ethics that mere theorizing never can. But he was perturbed when he read the following in the article:
Dr. Tur-Kaspa said that after having done the procedure a thousand times, he cannot think of a gene he would not test for if a patient requested it.
Says Saletan, “Experience teaches. And then, after a while, experience numbs. Beware.”
Saletan is right to encourage caution. If a blurry line separates severe medical disorders from late-onset and susceptibility disorders, an even blurrier line separates these disorders from non-medical conditions.
Another ethical quandary inherent in PGD has yet to be mentioned: the discarding of unwanted embryos. Whether they are embryos with a deadly GSS gene or embryos with a dyslexia gene, these embryos represent unique DNA that, with a simple change of scenery, will grow into a human being.
We can call it mercy, claiming that we are “maximizing the well-being” of future generations. But the assumption in this reasoning is that if we detect a certain unwanted gene, then it is better for a person never to live than to live with that gene. This logic implies that those already living with that gene would prefer not to have lived at all. This is problematic. Such flippancy with embryos, no matter one’s beliefs on when life begins, should be avoided.
—Ryan Slauer is a pre-med senior studying economics and Latin
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