- Associated Press - Wednesday, August 20, 2014

PHILADELPHIA (AP) - Pennsylvania has joined a small but growing number of states requiring that a Down syndrome diagnosis be accompanied by useful, accurate information about the genetic disorder.

The Down Syndrome Prenatal and Postnatal Education Act, effective Oct. 1, mandates that medical practitioners give expectant or new parents “informational publications,” to be provided online by the state health department.

The Down syndrome advocates behind such state laws - five in the last two years, including in Delaware and Maryland - promote them as a way to give unbiased information to pregnant women at a momentous, stressful juncture.

“This isn’t a partisan law. It’s not a pro-choice or pro-life law. It’s a pro-information law,” Kurt Kondrich, 51, of Upper St. Clair, said of the Pennsylvania bill he helped craft.

No doubt, though, advocates hope the information will discourage women from aborting affected fetuses now that noninvasive genetic testing is making diagnosis easier, earlier, and more accurate.

In recent years, articles in popular media and even scholarly journals have carried such ominous titles as “Is Down syndrome doomed?” and “With new prenatal testing, will babies with Down syndrome slowly disappear?”

Kondrich has blogged about his fears of a “silent eugenic movement” against children like his daughter Chloe, 11.

“As prenatal genetic testing advances,” he wrote, “I challenge people to ask the question, ‘Who will be next to be identified … and eliminated because they don’t meet cultural mandates for perfection?’ “

Pennsylvania’s legislation was introduced in March by Rep. Jim Marshall (R., Beaver Falls), passed with almost no opposition, and was signed by Gov. Corbett - and Chloe - on July 18. Its track was quickened partly because medical groups such as the state chapter of the American College of Obstetricians and Gynecologists (ACOG) were not asked to weigh in.

The law “may be well-intended, but it clearly interferes with the physician-patient relationship, and ACOG opposes (it),” said Owen Montgomery, chair of ob-gyn at Drexel University College of Medicine.

Advocates for other genetic disorders may demand me-too laws, he said. “And what’s the penalty for non-enforcement?”

The Pennsylvania Department of Health cannot make sure all practitioners print out or give links to the publications, acknowledged spokesman Wesley Culp. The department is now working to select appropriate publications, which must include “physical, developmental, educational, and psychosocial outcomes” and contacts for support services.

That choice could be tricky because of a question that has divided the Down syndrome community: Can information be considered unbiased if it doesn’t mention the abortion option?

The issue came to a head in 2008. Anticipating the debut of new noninvasive genetic tests, experts from major advocacy and medical organizations, including geneticist groups, developed an unprecedented guide called “Understanding the Down Syndrome Diagnosis,” available free online at lettercase.org. The booklet was supposed to become the resource to give parents.

But the next year, the two advocacy groups withdrew their backing rather than endorse two paragraphs on pregnancy termination. In 2012, they produced their own, briefer pamphlet, without mention of abortion.

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