Sunday, February 24, 2008

If someone in your life has Down's Syndrome or another genetic disability...

"We don’t want a world where parents feel driven to justify their children’s existence."

Sorry to venture away from "house blog" topics but I'm trying to help gather signatures for an important petition in support of a legislation that would require physicians to provide appropriate education to expectant parents about the realities of prenatally-diagnosed conditions, instead of the too-common practice of simply dumping the results of an imperfect test onto the parents without any real education about the realities of living with that condition, along with an implied expectation that the parents should choose to abort now that they know that their child is not "perfect."

This petition and legislation came about because the American College of Obstetricians and Gynecologists (ACOG) now instructs their doctors to recommend diagnostic testing for all pregnant women, regardless of age, for Down syndrome. Yet they have provided no resources or guidelines to the doctor's as to how to make it clear to parents that testing is an option and not a requirement, how to present the news of a positive result from the test, how to properly support the parents in making a fully informed decision, or how to help parents who choose not to abort to emotionally and logistically prepare to raise a child who has Down's Syndrome.

Not only that, most expectant mothers would not get amniocentesis with genetic testing, but a first-trimester blood test and ultrasound which is known to result in false positives, and which has led to a number of families choosing to abort healthy fetuses who are then found to not have Down's Syndrome.

The petition is located here:

The legislation is here:

My personal view is that to push this imperfect testing, or any kind of testing, without any education for the doctor or the patient, and with the clearly implied expectation that the parents would choose to abort if the results were positive, is sliding down the slippery slope of eugenics, and creates an assumption that we should only allow "perfect" children to be born. Raw information without substantial education as to how to process that information goes firmly against a physicians oath of "first do no harm." While I am someone who supports freedom of choice overall, to put expectant parents in a situation where they are essentially being pressured to choose to abort, even just by virtue of leaving them to make that decision without any substantive education of what life is really like as a person with DS or as a parent to a child with DS, is morally appalling to me.

Thanks in advance to anyone who signs their name to this petition.

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