Strollerderby : prenatal screening

Morning News: Rare Baby Gorilla Born in D.C.

Shannon LC Cate — Mon, 12 Jan 2009 14:33:00 GMT

Upstaging the President-Elect and his little inauguration is an as-yet unnamed, as-yet, unsexed baby gorilla. Born to experienced mother, Mandara, the baby is a welcome arrival to a population of animals considered critically endangered. You know what I found odd about this story, though? Apparently, the zookeepers usually feed Mandara birth control pills. I can see that you wouldn't want babies born too close together, but her next one up is seven. Odd to me that they would use birth control for an endangered animal. But what do I know? Maybe gorillas nurse until they're six. Anyone out there a primatologist? More photos and a link to a video of mother and baby after the cut.

For that matter anyone out there a conflict-free doctor? It seems those are so few and far between that the FDA can't be bothered to sort them out when it comes to drug trials. Almost half of doctors participating in drug trials don't fill out paperwork indicating their conflicts of interest--their investments, for example, in the companies whose products they are supposed to be testing--and as for the doctors who do fill out the paperwork, the folks responsible for collecting the data don't bother to read about said conflicts.

That doesn't reassure me one bit about ethical quandries like the increasing "hope" for a prenatal autism screen. According to researchers, mothers who bear children later diagnosed with spectrum disorders tend to have higher than normal amounts of testosterone in their amniotic fluid. This leads them to think a screen for such disorders could be around the corner, as might in-utero treatment. If it's a matter of testosterone causing spectrum disorders, they might just block the hormone. Of course this is all completely dodgy guesswork at the moment. And autism advocates are concerned that selective pregnancy terminations could wipe out autism and its cousin, the autistic savant, which, as those of us who admire Albert Einstein can agree, can be pretty darned useful. As can folks with lesser gifts than Einstein's. Dare I say I'd rather have autism in the word than not have it, if it means I get to have the various autistic people in my life whom I love and enjoy--and who bring the human population a unique perspective on the meaning of our existence. Of course, the screen wouldn't only lead to terminations. And I'm sure parents of children with spectrum disorders would have been glad to have more knowledge, earlier on, so they could prepare the proper treatment and therapy for their children. And therein lies the ethical quandry.

Finally, as promised, Here's more of that baby gorilla. And here's the page with the video.Is it just me, or is this whole baby gorilla thing really awesome? I don't know about you, but I needed a bit of happy news.

images: washingtonpost.com and nationalzoo.si.edu

Critical Health Information or Designer Babies? Where Will New Genetic Testing Lead?

Shannon LC Cate — Mon, 27 Oct 2008 19:00:00 GMT

As prenatal DNA tests become better and more widely available many worry that their benefits are outweighed by their dangers. A lengthy article in the Washington Post takes up this discussion in some depth. It seems that while new and better testing at the level of DNA is a great tool to help women carrying pregnancies in risky circumstances (advanced maternal age, previous history of genetically abnormal pregnancies or births, unclear ultrasound results, etc.) some ethicists still fear the tests could be misused. Says the Post:

"Some worry that the technique could be used to hunt for the rapidly growing list of genetic markers that merely signal an increased risk for cancer, diabetes, mental illness, obesity, addiction and other conditions later in life. Someday, similar tests could perhaps even vet fetuses for traits associated with beauty, personality or intelligence."

And in a broader look at concerns I expressed here recently, disabled rights groups worry that insurance companies may start refusing to cover treatment for conditions discovered through this testing, pressuring women to terminate pregnancies they might otherwise desire to continue:

"We want disabled children to be welcomed into the world. My fear is we're moving in the opposite direction," said Andrew Imparato, president of the American Association of People With Disabilities. "If we decide to use prenatal testing to eliminate gene-based disabilities, that's what the Nazis were trying to do, in their own crude way. I think we're saying that certain types of lives aren't worth living."

The old anxiety about "designer" babies comes up again in the article. I am of two minds about it. On the one hand, I think this fear is overblown--most parents will probably not be interested in screening for eye color or other meaningless traits. But on the other hand, the grey area the article mentions--genetic markers for a "tendency" to traits like obesity, certain cancers or other health problems or socially undesirable features may make it to the routine list someday. And at this point the technology is a dull enough instrument that many gene "markers" leave much unknown about what exactly their effects are in a real, live person. As a lesbian, I personally worry about parents terminating fetuses with genetic markers for same-sex orientation--that holy grail so many gay rights acitvists hope for but that I hope fervantly against.

As with any tool, it is imperitive that people be properly educated and trained to use it. The answer is not to refuse such new technologies, but to step up the education people receive about how to understand what it tells us.

More bioethics from this writer:

In Which I Find Myself in Rare Agreement with Sarah Palin (sort of)

Redefining Death to Preserve Life

In Which I Find Myself in Rare Agreement with Sarah Palin (sort of)

Shannon LC Cate — Tue, 07 Oct 2008 22:54:00 GMT

Researchers at Stanford University are working on a new prenatal screen for Down's Syndrome that would be based on a maternal blood test rather than amniocentesis, taking the risk to the fetus out of the process. I fully support women having as much prenatal information as they can get. I fully support a woman's right to decide whether or not to carry any pregnancy to term. So this new test is good news.

But I wish that good information about and services for people with Down's Syndrome was growing as fast as technology to test for it prenatally. I worry not that "unborn children" will be aborted, but that fear about Down's, leading to fewer Down's births will in turn lead to less exposure to people with Down's in society, leading to...less understanding about and more fear of Down's.

The easier it becomes for typically abled people to avoid getting to know people with disabilities, the less understanding there will be of them, the less accommodation will be made for them and the smaller the range of human experience society will find acceptable. While it is every woman's personal decision to raise a child with a known disability or not, I think more would probably choose to do it if we as a culture were not so filled with fear and loathing of anyone with physical or mental ability that falls outside an ever narrower range of "normal."

I may be in the minority, but I believe people with Down's Syndrome are part of a complex range of human variance and humankind would be poorer if no more people with Down's Syndrome were ever born. Medical testing is helpful. But I hope that as a society we can expand our understanding of who is fully human to include those people with Down's who end up in our midst anyway.

Image: Huffington Post

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