Study urges education about Down syndrome, to further acceptance

Washington D.C., Jul 8, 2014 / 11:02 am

A new study examines society's response to Down syndrome and offers recommendations, particularly education in the medical field, to improve the lives of individuals with the genetic condition.

"Ninety-nine percent of individuals diagnosed with Down syndrome report being happy with their lives. Studies also show that their joy has a ripple effect in their families and communities," said Chuck Donovan, president of the Charlotte Lozier Institute, which published the study.

"The impact of these unique men and women has recently been spotlighted in the media – everywhere from the King's ice rink in Los Angeles to the Reds' on-deck circle in Cincinnati," Donovan said in a July 1 statement.

In the institute's new study, "Improving Joyful Lives: Society's Response to Difference and Disability," author Mark Bradford offers recommendations to improve the lives of individuals living with Down syndrome, while tackling the mostly negative societal reaction to the condition, especially in the medical community.  

Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives, according to Dr. Brian Skotko's research at the Down Syndrome Program at Massachusetts General Hospital.

However, there remains a discrepancy between these positive statistics, and the rise in disability-selective abortions following a prenatal diagnosis of Down syndrome.

This tendency toward abortion of those with disabilities is one of the biggest challenges facing the Down syndrome community today, Bradford believes.

His research not only found that most prenatal diagnoses are met with immediate abortion, but also discovered a serious lack of information about Down syndrome accompanying these results.

The new study shows that the little information which is given following prenatal testing is often biased, outdated, narrow and inaccurate, given by medical professionals who prefer abortion in the case of disability.

Furthermore, according to Bradford's research, most terminations are due to a misunderstanding of Down syndrome, chosen often out of fear or grief.

His study offers various solutions to change the way society views Down syndrome, which could subsequently improve the already joyful lives of individuals living with the condition.

Bradford suggests that "advocates should work to expand the prenatal nondiscrimination legislation with other federal laws intended to protect the disabled."

Along with legislative measures, he believes medical professionals need to be re-trained on how to deliver prenatal and postnatal diagnosis of Down syndrome. Accurate and evidence-based information regarding delivering a child with Down syndrome should also accompany prenatal testing.

"Those living with Down syndrome have mild to moderate intellectual disability," Bradford explained. "It may soon be possible to improve cognition in those living with Down syndrome enough to ensure employment and independence for many. It may also soon be possible to restore neurological development before birth, radically changing even the best story that can now be given to women who receive an unexpected prenatal diagnosis of Down syndrome."

"It is critical that NIH funding levels be increased to support science that is just now translating into therapeutic trials to improve the lives of those living with Down syndrome."

Although challenges remain to change the socially negative misunderstanding of Down syndrome, research continues to improve the lives of those living with Down syndrome, ensuring their independence and growth in society, he stressed. This research has improved birth outcomes and quality of life, which may consequently improve the negative Down syndrome stigma and discourage Down syndrome abortions.

It is Bradford's hope to "create a future where true acceptance and inclusion may be realized for all those conceived with Down syndrome – not just the current minority who are allowed to live."