Down syndrome advocates want the Centers for Disease Control and Prevention and the World Health Organization to rethink how they’re classifying the chromosomal condition.

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

“It should not be classified as a birth defect by anyone,” said Jordan Kough, executive director of the nonprofit, which recently put out a statement rebuking what the advocacy group calls “misinformation on Down syndrome” from prominent health organizations.

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

The issue stirred up earlier this month when the World Health Organization posted on social media about World Birth Defects Day. The posting included a list of several common severe birth defects that included Down syndrome.

Parents and other advocates quickly clapped back over the inclusion of Down syndrome in the list and the World Health Organization updated the posting.

“WHO has edited its original post which, in conflating two distinct messages, unintentionally implied that Down syndrome was preventable through antenatal and newborn care,” the organization wrote in the update.

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

“The most common severe birth defects are heart defects, neural tube defects and Down syndrome,” reads a fact sheet about birth defects on the site.

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

“WHO’s current 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 concerns raised on terminologies and commit to reviewing language used around this issue for the future.”

While the CDC website does not expressly label Down syndrome as a birth defect, the agency lists the condition under that category.

“In the broadest sense, the term ‘birth defect’ may 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.

“CDC understands that parents and community members work hard to reduce the stigma that may come with physical differences. We acknowledge that the word ‘defect’ may connote 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 closely affected by this issue.”

The National Down Syndrome Congress also called out the March of Dimes, a nonprofit that works to promote healthy outcomes for mothers and babies. The organization lists Down syndrome under “birth defects & other health conditions.” The March of Dimes did not respond to a request for comment.

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

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

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