Educate, legislate, fund: three responses to Down syndrome

Washington D.C., Oct 27, 2014 / 01:06 am

In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts said.

"In a sense, Down syndrome is the canary in the coal mine, it's the test case of how we in a society will deal with difference in disability," said Mark Bradford of the Jerome Lejeune Foundation.

"Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?"

The March for Life hosted a panel discussion on the theme for the upcoming march "Every Life is Precious," to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event commemorated Down syndrome Awareness Month.

According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted.

However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy.

"We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome," Bradford said.

According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy.

"Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives," the report stated, but since most parents still choose abortion, that "raises critical questions" about how medical professionals deliver the diagnosis.

In fact, Bradford added, according to a study "one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy." And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis.

"We can see that the medical community is still behind the curve in terms of what parents' understanding is," Bradford stated.

More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, "the only way to save them is to cure them."

Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added.

"NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person," he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person.

"So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio," he remarked.

And much progress has been made with research for the disease, the Lozier report claimed.

"Medical research has made incredible strides toward improving the lives of those
living with Down syndrome, but even more exciting are advances that have taken
place in investigating prenatal therapies to improve birth outcomes," the report stated.

"Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion."

Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress.

The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability.

In September, the Senate Finance Committee announced it had agreed to move the bill forward.

"Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act," the committee said Sept. 22 in a statement.

"Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President's desk in the lame duck session."

This article was originally published Oct. 27, 2016.