Friday, October 05, 2007

Testing, testing...

Guess what I’m doing right now? Yup I’m blogging from my couch!!! Isn ‘t it lovely? We finally got the wireless network up and running (again). Keep your fingers crossed that it lasts. Later today I will be attempting to get the CPU we’ve hooked up to the TV going so we can download our movies from netflix; then all will be right with the world.
Sorry, that’s just me geeking out a bit.
So anyway…..
Dutch listed a post about their recent prenatal screening test and boy has it lit up the wires.
It’s interesting to me how differently each of us will take something when we read it. Our personal experiences and the resulting prejudices that shape our opinions on a subjects define our reaction. All he really did was describe his experience and the conflicting emotions he had over the news he would get as a result of this test, good or bad. But many took offence at his perceived lack of empathy toward families with special needs kids. Then the comments started to get heated with the debate regarding “choice.” Poor Dutch, he was just writing about his experience and the internet attacked him. But that is how it goes with the internet, you think you’re writing about this amazing dinner you made and then suddenly PETA is sending you hate mail because you were eating animals. Your most mundane topics take on a life of their own because of the way people perceive you’re writing.
His post was intended to talk about the ethics of the way in which the test is presented to parents. In his case the test was not really treated as optional. It wouldn’t have mattered to them, but that’s not his point. He also discussed the ethics of having this information, in that we are potentially creating a world in which all babies that are born are “disability free”. Is this a world we really want to live in? And while he didn’t even get to this part, my mind went the direction of the ethics of things like choosing your child’s gender, height, hair & eye color. If you’re choosing for your child to be disability free when does that move into things like we only want blue eyed, blonde haired kids? (Personally I prefer my children to have very deep blue eyes, dark brown hair and olive colored skin, but that’s me & I didn’t really get a vote on the subject. Just got to buy the lottery ticket.) Do we circle back to certain hair, eye & skin colors becoming a “disability”?
Eventually, the topic turned back to his intended subject: our medical system. Maybe that’s not exactly what he meant, but that’s where it headed. Much of his concern related to the way in which the test is presented to parents as a standard test, when really it’s a screening. There’s a big difference, I know because I came back high risk for Down’s in a screening. But it isn’t presented that way. In fact, because it is a screening and not a true test of potential issues (a screening to determine if you need the actual test) the information you are provided with is really not complete. And the doctors who are delivering the news don’t really get any training in how to deliver less then great news, which is a large part of what he was driving at. How ethical is it for a doctor to tell you you’re high risk for Down’s or other chromosomal abnormalities when they really don’t know? How ethical is it for a doctor to tell you you’re high risk, but not inform you that what they are giving you is a score based on many factors including external ones (like your age) that existed before you ever walked through the door? How ethical is it for parents to make life changing decisions about their unborn child without being given all the information? Because that’s really what’s going on.

I know this post got a bit heavy, but when I have a few minutes I will write about our “scare” during my first pregnancy. It was pretty awful. Then I think you’ll understand why I feel compelled to comment in the first place.


kellyo75 said...

When I was pregnant, I opted not to have that "screening" done BECAUSE I knew far too many people who got all upset because it said they were at risk. BUT hey,GLAD you get to blog from your couch! My personal favorite place to blog, too!

Dutch said...

thank you for your sensitive treatment of my very controversial post.

I think when doctors get trained on how to interpret the results of this brand new, now-routine screening, they should also receive training in how to deliver results and discuss them with their patients. part of that needs to be explaining that the results have a very high risk of error and false positives. for example, my sister had an initial screening and was told her baby was dead. three weeks later, they found a heartbeat, and now I have a beautiful, healthy niece. technology is not infallible. doctors should be the first to admit it.