A Son with Down's Syndrome

From George Will's column about his son, Jon, who was born with Down's Syndrome:

Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing. [emphasis added]

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go.

Comments

[Philobite]

My wife became pregnant (to our delight) in the later years of her fertility. Because of her age she was assigned a category of higher risk of "birth defect" and so we were referred automatically to a clinic for high resolution ultrasound, genetic counseling and amniocentesis.

While we did do the ultrasound and received the genetic counseling we stopped the consultant when she encouraged us to do the amniocentesis. I asked her what the risk of spontaneous abortion or other damage from the amnio was. She gave us a percentage risk number. I then asked, what is the chance of our daughter being born with Downs or another detectable problem, given that we had a clean high-res ultrasound and good bloodwork numbers. It was a smaller number than the risk from the amnio!
I looked her in they eye and said, "So you want us to do a procedure that has a higher risk of killing our baby than the chance of delivering a live baby with Downs or other birth defect." She just stopped in her tracks, turned red, and then said, "But wouldn't you want to know? Wouldn't you want to be prepared?" I sat quietly and let her chew on things a bit, and then she pulled out the papers allowing us to sign to deny the amnio.

The doctor then tried but failed to hide his disdain for us when we reaffirmed our denial of the amnio.

It was very, very apparent that this was about money (they get lots of $ for amnio's), and it was about "trusting the experts" and it was apparent that no one in their experience turned down the amnio in our situation.

Then... it happened again. Exactly the same performance and attitudes when we were referred for our second daughter 18 months later. This time I had to be forceful in denying the amnio. They were quite pushy and I had to tell them in no uncertain terms that the risk of harm to the baby made the amnio a non-option, no matter what the test might show, and this despite the fact that this time the percentage risk of defect was only slightly higher than the risk from the amnio. I asked, "Is there a reason, given the risk profile of the procedure, to do the amnio, given that it would not alter our decision to have the baby?" She just sat like a deer in the headlights and finally mumbled, "No one has ever asked that before."

We now have two very healthy girls, 10 and 12 years old. I sometimes ponder that we might have killed them out of curiosity, or out of intimidation, or to put a few dollars in a doctor's pocket.

[dave]

It is not wise to lump the Baby Boomers together, like some do with Blacks, Hispanics, or any other group and then vent your bias against them, as a representative of Christ.

[Louis Kuhelj]

Philobite

Thanks for sharing the reality of what actually drives the advances in medicine. You have nicely illustrated how folks in general tend to hold the medical profession in a kind of priestly reverence and do not ask the tough questions of the profession that should be asked. That you are an exception is not much of a surprise to me, but it speaks well of the level of wisdom you have exercised in your particular situation. I think there is a certain medical liability to giving people financial incentives to do a particular medical procedure that should not be overlooked. To just make a general statement about the benefits of financial incentives without giving it a proper cost benefit analysis is reckless and I think this kind of recklessness pervades capitalism as a whole. It is only the wisdom model that can properly guide us through the shoals of this kind of dangerous system that puts health and lives at risk for the sake of a vacation homes of a few well to do and talented entitled elite and pampered people.

[Jesse]

I wonder, with these tests, what is the false positive rate? Even if eugenics were morally acceptable, would it be justified to kill a human being who will probably suffer from a birth defect?

[Louis Kuhelj]

Jesse

"Even if eugenics were morally acceptable"

Why did you say morally acceptable instead of morally right?

[Jesse]

Louis,

(Your question causes me to wonder if I adequately conveyed my point. ) By morally acceptable, I meant permissible, but not obligatory. I would have used "morally right" if I had meant morally obligatory. Maybe I'm not using terms correctly, but I hope that gives you an idea of what I intended.

[Louis Kuhelj]

Jesse

"(Your question causes me to wonder if I adequately conveyed my point. ) By morally acceptable, I meant permissible, but not obligatory. "

Ok. Then who grants the permission and what gives them the right to do so? Why should I not question their authority to give any such permission?

"I would have used "morally right" if I had meant morally obligatory."

Understood.

" Maybe I'm not using terms correctly, but I hope that gives you an idea of what I intended."

I think you cleared it up. To me it seems that the questions I just raised need an answer as another obligation has to be considered. Why should I be obligated to recognize the authority of those who claim it when it comes to their authority to grant permission for me to espouse eugenics.

I am reminded of the permission granted by Hitler to his underlings to do morally reprehensible acts and then assuring them that He would take all the moral responsibility for those actions, leaving them blameless. No one questioned where his authority came from. I will not be making that kind of mistake here. It is a mistake that has grave consequences and this is not just a guess on my part. It is punctuated by mass graves of the murdered in the third Reich death camps.

[Jesse]

Did you think that I claimed that someone can grant permission for eugenics, and that would just make the practice OK? I was trying to ask what follows if eugenics were by its nature morally acceptable/permissible/not immoral (for the sake of argument).