Saturday, 6 February 2010

"...don't want no short people round here..."

Dan Kennedy seems not to understand what is meant by ‘medical progress’, stemming from his own experience of having a achondroplastic child:
Following the examination, she sat us down and began speaking in her best concerned-doctor tone of voice. "I want you to know," she said, "that there really wasn't anything you could have done about this."

What she meant – and what we instantly knew she meant – was that there would have been no way of, and no reason to, screen for achondroplasia ahead of time. No way to terminate the pregnancy and try again, and to hope for something that she believed, or that she assumed we believed, would be better.
Well, there’s a lot of assumptions in there…
We were flabbergasted at the boldness with which she stated her case, but I suppose we shouldn't have been surprised.
Well, no, you shouldn’t.

She is, after all, a medical professional, and a human being, and no doubt couldn’t see (absent strict religious objections) any reason not to assume that new parents would not want a child with an inherited deformity if there’s any reason not to have one…
We have all been culturally conditioned to believe we are entitled to the perfect child. And a little girl who would grow up to be four feet tall with exceedingly short arms and legs does not fit that paradigm.
No. To be brutally honest, it doesn’t.

That doesn’t mean we should slaughter them out of hand wherever we see them, but what on earth is wrong with science trying to find a way for them not to be born in the future?

Because that seems to be exactly what has got Dan’s knickers in a knot:
Seventeen years later, we are on the verge of being able to do something when our image of perfection is threatened. The New York Times reports that a company called Counsyl has developed a genetic test for about 100 genetic conditions. And it's cheap: $349, or $698 for a couple.

The Counsyl test will not be given in utero. Rather, it's designed to determine whether prospective parents are silently carrying any genetic diseases that might convince them they'd be better off adopting, or trying in vitro fertilization, or not having kids at all. And there are some truly horrible genetic diseases on the list – diseases like Tay-Sachs, which leads to death in early childhood.
And no-one would argue that science, in seeking to rid us of these, isn’t doing its job. Would they?
But when I looked for what Counsyl rather ominously calls "preventable genetic diseases" that are covered by its test, I immediately saw two forms of dwarfism… What was on the list were two recessive forms of dwarfism, diastrophic dysplasia and cartilage-hair hypoplasia, both of which are perfectly compatible with a good quality of life. By way of illustration for you Little People, Big World fans, Matt Roloff has diastrophic dysplasia. His wife, Amy, and their son Zach have achondroplasia.

Moreover, the former head of our Little People of America regional group has cartilage-hair hypoplasia. He's a schoolteacher who rides a customised motorcycle and is married to a woman with achondroplasia.
Ah. Right. The appeal to naked sentiment. ‘Look, here’s some people living great lives and coping nobly with their disability! How awful it would be not to have them?’

Well, yes. But then, if we didn’t have them, we wouldn’t know how nobly they coped, would we?
In other words, these are not conditions that should be labelled as "preventable genetic diseases".
In your opinion…
You don’t get to speak for everyone else.
That they would be considered as such underscores our conflicted attitude toward difference. We celebrate it, but we fear it as well, and would stamp it out if given the chance.
We celebrate it because those people born with it have no choice; we can’t dispose of them, and wouldn’t want to.

But to say that we should not, therefore, seek to prevent more of them coming into being is getting perilously close to the approach of this charming fellow from last week, with his ‘suffering is noble’ schtick…
In the late 1990s Wertz had conducted a study of about 2,000 people – one-half genetics professionals, one-quarter primary care physicians and one-quarter patients. They were asked whether they would choose abortion if achondroplasia were detected in utero. Among the genetics professionals, 57% would opt for termination; among physicians, 29%; and among patients, 24%.
Not exactly surprising stats, when you stop to think about it…
The problem with such an attitude is that it could lead to the elimination of all sorts of genetic variations. Dwarfism isn't exactly a disease, but it does carry with it a variety of physical complications, mainly orthopaedic. Yet it's a normal part of the human spectrum. What implications might there be for the species if it were erased from our collective genome?
We wouldn’t have anyone to play the traditional roles at the Christmas Snow White panto? George Lucas wouldn’t be able to remake ‘Willow’?
And what about other types of human variation that may have some genetic basis, like bipolar disorder, associated with artistic creativity? What about homosexuality – not a disorder at all, but not exactly welcome in many families? Or why go for a kid with average intelligence when you can try again and maybe produce the next Einstein?
And maybe if everyone tried for an Einstein, we’d eventually run out of Tesco checkout operators

It always comes down to this, in the end; ‘I had a child with XXXX and now I think we should all realise that having a child with XXXX isn’t so bad, so I’ll make everyone else who doesn’t want to bring one into the world feel bad for that attitude…’
In 2010, and in the years and decades to come, we will not only be able to do something, but I fear we will be expected to do something as well. It's a chilling prospect, and one we haven't even begun to talk about. The time to start talking is now.
Indeed. But you may not like the answers.

Looking at the comments, there’s not a lot of agreement for your view, unless it’s amongst the people already dealing with these issues, or those who are plainly heavily invested in the ‘diversity’ message…


Mark Wadsworth said...

Agreed. It's best to leave it to the parents to decide what to do. In fact, that is the only thing we can do. So why bother trying to enforce anything else?

Anonymous said...

Khan Noonian Singh was unavailable for comment...

tolkein said...

So, you think killing the baby before its born is better for it than living with a disability. Why stop at birth, then?

The law at present doesn't let you kill a baby without two doctors signing to say that the risk to a woman’s physical or mental health will be greater if she continues with the pregnancy than if she ends it. Even today you can't just kill a baby because you want a better version. Except that doctors have shown that they don't pay much attention to this law. Are you happy that doctors in cases of life and death feel that complying with the law is optional?

Fat Hen said...

This calls for a song!
ent vegetarians use.


JuliaM said...

"It's best to leave it to the parents to decide what to do. In fact, that is the only thing we can do. So why bother trying to enforce anything else?"

Because we shouldn't make people like Dan feel they made the wrong choice. At least, I think that's what he really means...

"Khan Noonian Singh was unavailable for comment..."


"So, you think killing the baby before its born is better for it than living with a disability. Why stop at birth, then?"

The article is only tangentally talking about abortion; it's discussing new ways of testing for genetic abnormality before you even get down to the baby makin' process.

Isn't that what we hope for from science? Not perfection, but solutions?

"This calls for a song! "

Can't beat Randy for a tune that'll make you hum along, and words that'll make you think...

Anonymous said...

"‘Look, here’s some people living great lives and coping nobly with their disability! How awful it would be not to have them?’"

Quite, whatever would Discovery Channel do? These programs are nothing more than the modern day equivalent of the freak shows & circuses of 19th century America.