Sunday, November 20, 2005

As good as any, and better than most

A few weeks ago I discussed prenatal testing for disabilities such as Down syndrome, and considered the implications of being able to eliminate, before they are even born, people who have such conditions. Since then, a test has been developed to identify genetic defects even earlier during a pregnancy, when expectant parents have more time to consider their options--and when abortions are safer to perform.

Given that many parents will decide to terminate a pregnancy if they learn their child will have Down Syndrome or the other problems that can be discovered through prenatal testing, then earlier testing is a good thing. But it only sharpens the moral dilemma: Is it right to abort a pregnancy merely to spare a child--and ourselves--a life that we do not believe is worth living? And if you think it is, how do you explain it to those who already are living with these disabilities? Are you prepared to tell them it would have been better had they never been born?

An article in today's New York Times tackles these very questions, and raises the possibility of a future that we have seen in science fiction, in films and literature, from "Brave New World" to "Gattica":

Some bioethicists envision a dystopia where parents who choose to forgo genetic testing are shunned, or their children are denied insurance. Parents and people with disabilities fear they may simply be more lonely. And less money may be devoted to cures and education.

Is this likely? It's tempting to say no. But consider, as this article does, that $15 million was spent to develop the new test for Down syndrome. That father of one child with Down syndrome asks what else could have been done with that money:

Indeed, the $15 million spent on the new test for Down by the National Institute of Child Health and Human Development might have gone instead toward much-needed research on the biochemistry of people living with the condition, said Michael Bérubé, co-director of the disabilities studies program at Pennsylvania State University.

Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if fewer children are born with the condition, hard-won advances like including them in mainstream schools may lose support. "The more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you'll wind up with a society that doesn't welcome those people once they're here," he said. "It turns into a vicious cycle."

Which brings me to "Gattaca." It's about a future in which children are genetically engineered to perfection, and in which those who are born naturally or who otherwise develop disabilities are relegated to second-class status. The main character, Vincent, disguises his disabilities, which include a congenital heart defect and myopia. In one memorable scene, after Vincent had to discard his contact lenses, he must cross a busy road, and the movie does a decent job of conveying what it is like to be severely near-sighted. (Believe me, I know.)

When I first saw the film, I was facing what could have turned out to be a serious medical problem, and this movie seemed to ease my fears. Vincent falls in love with a woman named Irene, who is all too quick to believe what society has told her about her own "handicap", a heart defect. As Vincent tells her,

"You are the authority on what is not possible, aren't you Irene? They've got you looking for any flaw, that after a while that's all you see. For what it's worth, I'm here to tell you that it is possible. It is possible."

As humans, we are defined by our limitations, and our ability to overcome them. The irony of Vincent's words, however, is that what is possible is not always what's desirable.


Blogger Maria said...

I don't think you need to go too far to wonder what a world like this would be like. I understand that in China where one child is the rule, many test for sex now and abort the females as male children are more desirable.

2:09 PM

Blogger Jonathan Potts said...

I think that's been the case for some time. Or else girls are abandoned.

6:30 PM

Blogger Sherry Pasquarello said...

i can only relate my experiences, my thoughts. it's a really delicate subject with strong feelings and strong divisions. i think as with everything, genetic testing, prenatal testing things of that sort bring good and bad and sorrows. i do think any decisions, to have the tests or not, to abort or not is so very personal and heartbreaking that it is no one's business but those involved, especially the woman. i can not walk in another's shoes, understand their circumstances, personalities, their breaking points and mine or yours are probably very different as we all are different.

i have NF1, wrongly called elephant man's disease. (i do have a bit of a gallows humor, helps me cope, so the name doesn't bother me, i have elephants all over my home)

i wasn't properly diagnosed til i was 46 tho in hindsight after my medical records were reviewed it was obvious that is what i was born with.

it is a defect of the 17th chromosome. the disease can be mild to the point that one never knows they have it or it can be one of the most hellish rides imaginable. i have had a nasty brain tumor at the age of 2 1/2, grand mal seizures and water on the brain, made it through, was very lucky, have had health issues all my life plus some LD's that i deal with every day.
would i have chosen to be aborted. how would i know if i had been? really, how would i?
if my mother had, i think i would have understood.
i have a daughter, she is a bright, kind and giving human being.
she also knows that had i known that i had NF before i had her, that i would not have had her. i would have had my tubes tied so that i would not have had to make a choice as to abortion. the main thing is it is my body, my choice.
before i had my daughter, i had a pregnancy that became endangered. i spent a week in the hospital in bed, not moving, bleeding, hooked up to iv's only drinking water and celery broth( that is a real treat let me tell you!)i chose to try to save my pregnancy, i hemmoraged and really came close to not being here, but i was ok because i was in the hospital.i lost that, "almost my child."

again, it was my body, my choice.
no one had a gun to my head or threatened jail or the fires of hell if i had chosen to abort and not try to save my pregnancy. when i was pregnant with my daughter, i had to get steroid shots every other week, was on bed rest, considered a "high risk" had her by cesearian and was happy to go through what i did because i wanted to, i chose to. i can't imagine being forced to do what i did.

in the end, that's my point, i suppose.
everyone brings up downs during genetic/abortion debates. that isn't quite fair. downs kids and adults are generally happy, joyous people. i grew up with a boy around the corner from me that has downs. he was a joy moreso than a sorrow, except that his mom worried about how he would fare after she was gone.
much better to debate using a different example than downs.
as to china, most mothers there do not want to abort or abandon their daughters, but this is what can come of social and government pressures. many ladies go through great difficulties to travel to large cities to give birth and then make sure their infants are abandoned but placed so that a policeman or someone sees the child and turns it over to the athorities. i am grateful that the chinese government cares for these children and allows adoptions. i have a beautiful chinese, by birth, american now, grand daughter. she is the light of everyone's life and a blessing beyond belief.
just my take on things. i know there will be some that take issue with my thoughts because it is such a tender and important subject. i am happy and lucky to live in a country where, for the most part, people can discuss painful divisive things in a civil manner. please, no nasty e-mails. i respect your opinion. no one has ever changed anyone's mind with hatred and name calling.
use genetic testing if you want, if you don't, then let no one force you.
as to insurance companies, well, that as you can imagine with me, is another rant!

12:12 PM

Blogger Jonathan Potts said...

Thank you for that thoughtful and heart-felt response, and for your courage in sharing such a deeply personally matter.

5:27 PM

Blogger Sherry Pasquarello said...

thank you. i feel that it is important that people realize that tho some people see issues as either black or white, left or right, life is not that simple. when i read your post, i knew that this was an issue that i have some knowlege of. i get so tired of all the same old arguments. i've been through some stuff, i've lived long enough to have seen what happened before abortion was legal and before genetic testing was a reality, everyone is different. we tend to forget that. some people can deal better than others. i just think it is such a personal choice. i'm here, i deal, but i wouldn't want to take a chance on knowing that i brought a child into this world having to deal with some of the things that i have or worse. there are worse things. that is the tragic part. i'm me, warts and all as they say.
a wonderful organization to give to is ctf. org the children's tumor foundation. you might want to check out the site. neurofibromatosis is still a very misunderstood thing and is more common than cf and muscular dystrophy combined. 1 in every 4,000 births. thank you again for letting me have my say.

6:43 PM

Blogger Mark Rauterkus said...

You open a big ethical and legal set of questions. HUGE. These are the questions of our time, I dare say.

Of course, one blog mention just scratches the surface.

What about a genitic test for someone you are to hire? Insurance coverage says you can't work here as you're pre-determined for breast cancer. Such genes are identified.

How about -- I can't date you because you carry XYZ.

The child, in the womb, is one matter. But, the genetic make-up of the child to be (even just a possible child), resides with the mom and dad, long before marriage yet alone conception.

When we had our kids, FWIW, we didn't do many of the tests. Too many false positives. Too much stress. Didn't even care to know the gender of the kid.

I guess there are times in life when ignorance is bliss. But that is a personal choice. The science is going to roll and grow. Don't think we can expect -- nor try -- to curtail that quest for knowledge.

But, we need to have ethical individuals involved. We need to talk and study the philosophy of these efforts -- with lifelong learning and continual education among the professionals in research and healthcare.

10:34 AM

Blogger Sherry Pasquarello said...

yes, it is a very complex subject. as to insurance companies, i have a feeling that not many of us could afford the rates if the companies could has access to genetic testing. i was told years ago never to let my insurance lapse because it would be near impossible to get another policy because of my past medical history and now being diagnosed with NF1. well, you can imagine. when i was a toddler i had a nasty brain tumor and my parents couldn't get insurance on me for 5 years and that was back in the 50's. as with almost everything, there is good and bad. some testing can alert doctors that a problem exists that should be monitored and corrected at birth such as a hole in the heart etc.
i suppose we will see with the passage of time what will be. it is a really delicate and iffy discussion, especially for blogs. it's worth trying tho.

12:52 PM

Blogger djhlights said...

But, the genetic make-up of the child to be (even just a possible child), resides with the mom and dad, long before marriage yet alone conception.

Actually they have about 80%, the other twenty are divided between corporations and universities.

The new study reveals that more than 4,000 genes, or 20 percent of the almost 24,000 human genes, have been claimed in U.S. patents.

Of the patented genes, about 63 percent are assigned to private firms and 28 percent are assigned to universities.

The top patent assignee is Incyte, a Palo Alto, California-based drug company whose patents cover 2,000 human genes.

8:50 PM

Blogger Sherry Pasquarello said...

maybe they have a 17th chromosome that is without defect they can spare?? me, i keep checking e bay for one, but nope, only virgin mary grilled cheese sandwiches!!! ; )

12:56 AM

Blogger Jonathan Potts said...

I've enjoyed the lively discussion. For the record, I believe this decision belongs solely to the expectant parents, if I don't agree with the decision that some parents make.

2:15 PM

Blogger Jonathan Potts said...

I think I dropped the word "even" after "parents."

2:16 PM

Blogger Sherry Pasquarello said...

i think that you and i see some things basically the same. i too believe it is up to the truly was a very interesting discussion.

2:20 PM


Post a Comment

Subscribe to Post Comments [Atom]

<< Home