A reader writes:
Thanks for posting on preimplantation genetic diagnosis (PGD). I’d like to offer my perspective as both someone who enjoys thinking about the social implications of technology (graduate degree in Technology & Policy, big Kurt Vonnegut fan), and as a parent who has used this technology. I have actually pondered for many years about the morality of choosing the sex of a child, or screening for diseases, or tailoring a child’s appearance and traits. The problem of course is that there is a slippery slope at work (which the Gattaca clip you posted makes very clear), and it seemed to me that it was not our place to play god. Not being a religious man, I tended to think of this more in terms of the risks to humanity from deliberately reducing the biodiversity of the gene pool, and what that might mean for the ability of the human race to evolve in response to changes in their environment.
Enter reality.
My wife is a carrier for X-linked retinitis pigmentosa, a more or less untreatable degenerative eye disease caused by a mutation on the X chromosome. Her father and her uncle both began to lose their eyesight at age three, and were legally blind by early adulthood. When we had our son three years, ago, we knew that my wife was an obligate carrier of the mutation and that our son had a 50% chance of inheriting the disease from her.
We began taking him to an ophthalmologist to monitor his eyesight. I can hardly express how painful it was to watch our little boy discovering the world and know that there was an even chance that he would soon be losing his sight. We soon learned that there are genetic tests for the two most common mutations that cause X-linked RP, and we proceeded to have my wife, her uncle, and our son tested. I recall getting the phone call from the geneticist with the good news and how I cried with relief when we learned that our son had tested negative for the mutation. Not only had we dispatched with the sword of Damocles, we could now forego many costly visits to the ophthalmologist for ongoing monitoring.
At the same time, we were having trouble conceiving our second child. We visited a fertility clinic, and in the process heard about PGD. At that point, all of the old hypotheticals, thought experiments, and moralistic navel-gazing went out the window. For us, it was a no-brainer. Since we were undergoing IVF anyway, we were more than happy to pay the extra few thousand dollars to ensure that our child would not suffer from this disease. We did not want him to deal with what his grandfather and great-uncle had dealt with, and we did not want to go through the stressful ophthalmologist visits again.
At the same time, we knew that by default we would also have the opportunity to choose the sex of our child. This gave us more pause, especially when considering that we might have to choose between an unaffected male and a carrier female. We wanted a girl, and while a carrier female would never be affected by the disease herself, like her mother she would have a 50% chance of passing the mutation on to her children. (In the end, we were spared this choice: all of the embryos for which they could get a clear PGD result were female.)
None of this obviates the moral questions in play here. I just mean to point out that as with so many contentious issues, where you stand depends on where you sit, and what seems mildly unsettling for society in the abstract can be a godsend for an individual family.
The Dish 