CDC and WHO slammed for perpetuating Down syndrome ‘misinformation’

Actress Lauren Potter, center, appears alongside other people with Down syndrome in ‘Not Special Needs’, a 2017 short film that questions whether the needs of people with Down syndrome are really ‘special “. (Publicis New York)

Down syndrome advocates want the Centers for Disease Control and Prevention and the World Health Organization to rethink their classification of the chromosomal disorder.

Currently, health agencies have grouped Down syndrome alongside other birth defects. That’s a problem, according to the National Down Syndrome Congress.

“It shouldn’t be classified as a birth defect by anyone,” said Jordan Kough, executive director of the nonprofit, which recently posted a declaration chastising what the advocacy group calls “Down syndrome misinformation” from prominent health organisations.

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“It’s a genetic condition and often people with Down’s syndrome have other birth defects or other issues like congenital heart disease, which is very common in people with Down’s syndrome, but by labeling all of Down syndrome as a birth defect in its own right, we believe is completely inappropriate and completely inaccurate and potentially leads to harmful perceptions of people with Down syndrome in the wider community,” Kough said.

The issue was raised earlier this month when the World Health Organization posted World Birth Defects Day on social media. the assignment included a list of several common serious birth defects, including Down syndrome.

Parents and other advocates quickly applauded the inclusion of Down syndrome in the list, and the World Health Organization updated the posting.

“WHO edited its original post which, by confusing two separate posts, unintentionally implied that Down syndrome was preventable through antenatal and neonatal care,” the organization wrote in the update.

However, the information remains on the World Health Organization website.

“The most common serious birth defects are heart defects, neural tube defects, and Down syndrome,” reads one. fact sheet on congenital malformations on the site.

In a statement to Disability Scoop, the World Health Organization said it was aware of the controversy.

“The current WHO definition of birth defects is broad and includes congenital and chromosomal conditions such as Down syndrome that are present at birth,” the statement said. “However, we have listened to the concerns raised on terminologies and are committed to reviewing the language used around this issue for the future.”

Although the CDC’s website does not specifically classify Down syndrome as a birth defect, the agency lists the condition under this category.

“In the broadest sense, the term ‘birth defect’ can encompass a diversity of conditions, including physical malformations, sensory deficits, chromosomal abnormalities, neurodevelopmental disorders, among others. All types of chromosomal abnormalities are included in this category,” the CDC said in a statement to Disability Scoop.

“The CDC understands that parents and community members work hard to reduce the stigma that can accompany physical differences. We recognize that the word ‘defect’ can evoke a negative perception,” the CDC statement continues. “The National Birth Defects Prevention Network (NBDPN) and other partners engage in ongoing conversations about the use of the term ‘birth defects’ and value the perspectives of community members most affected by this. problem.

The National Down Syndrome Congress has also called on the March of Dimes, a non-profit organization that works to promote healthy outcomes for mothers and babies. The organization lists down syndrome under ‘birth defects and other health conditions’. March of Dimes did not respond to a request for comment.

“These misrepresentations by global influence organizations are not without consequences; they have the power to perpetuate an already widespread misunderstanding about people with Down syndrome,” reads the recent statement from the National Down Syndrome Congress.

The advocacy group urges the CDC, WHO and March of Dimes to ensure “their online resources reflect accurate information about populations like those living with Down syndrome.”

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