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Death panels for Down’s syndrome and the disappearing population

Posted in Politics, Screening by Matt at WelcometoIllinois on September 19, 2009

Congresswoman Cathy McMorris Rodgers gained a lot of respect from me for her involvement in the Congressional Down Syndrome Caucus and its role in promoting the US Prenatally and Postnatally Diagnosed Conditions Awareness Act.

However, McMorris-Rodgers has blown it by jumping on the Sarah Palin’s “death panels for Down syndrome” bandwagon.

According to CNN: “Surrounded by a group of parents clutching pictures of their special needs children, two Republican members of Congress stood in front of the Capitol on Tuesday and warned that President Obama’s proposed health care system will lead to a rationing of care for children with disabilities.”

Like Logan at Disposable Brain, I would like to draw your attention to the following:

“McMorris-Rodgers could not point to any specific language in the legislation currently before Congress that would deny health care to disabled children.”

I cannot believe that people like Palin and McMorris-Rodgers are not being held responsible for wasting people’s time by misdirecting such an important debate despite having no evidence for their claims whatsoever.

I previously noted that the US National Down Syndrome Congress is in favor of health care reform, noting that the current system does not adequately serve people with Down’s syndrome.

Meanwhile Brian Skotko, clinical genetics fellow at Children’s Hospital Boston, has expressed concern about new non-invasive pre-natal testing techniques for Down’s syndrome and other conditions, asking: “As new tests become available, will babies with Down syndrome slowly disappear?”

“Research reviewed by Skotko showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. In the absence of prenatal testing, researchers would have anticipated the opposite – a 34% increase in births – due to the trend of women waiting longer to have children; known to increase the chances of having a baby with Down syndrome.”

Skotko also suggested some practical steps that could be taken to help reverse this situation, such as “Develop guidelines around how health professionals should deliver a diagnosis of Down syndrome” and “assemble information packets that give accurate, current information on Down syndrome”.

The second of this is of course one of the major deliverables of the Prenatally and Postnatally Diagnosed Conditions Awareness Act, and the Science Daily report notes that such an information pack has recently been selected by the National Down Syndrome Society and the National Down Syndrome Congress.


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