A new paper authored by Mark Bradford, president of the Jérôme Lejeune Foundation USA and released today by the Charlotte Lozier Institute, examines societal response to individuals diagnosed with Down syndrome (Trisomy 21) and makes policy recommendations to further improve their lives.
“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. 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,” said Chuck Donovan, president of the Charlotte Lozier Institute.
“Tragically, the majority of babies diagnosed prenatally with Down syndrome are aborted. Mark Bradford and the Lejeune Foundation, along with other disability advocates, ardently believe that this does not have to be. With Down syndrome, as with any other difference or disability, we must respond with knowledge, understanding and compassion.”
In the age of sophisticated prenatal screening, babies diagnosed prenatally with Down syndrome are often targeted for abortion. Bradford writes that, though abortion may not be the parents’ preferred option, “It is chosen because of fear of an uncertain future, grief over the loss of an image parents had in mind for their child and their family, concern that their child will suffer, concern over a lifetime of managing health issues, and other similar concerns, most of which can be dispelled by the experiences of families living with Down syndrome.”
Bradford continues:
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“…Advocates should work to expand prenatal nondiscrimination legislation that is consistent with other federal laws intended to protect the disabled. While research to improve the lives of those living with Down syndrome has progressed rapidly, federal funding for Down syndrome research lags considerably behind other similar genetic disorders. Research to improve birth outcomes and quality of life over the lifespan will certainly improve the message given with a prenatal diagnosis and discourage the termination of Down syndrome pregnancies.
“Those living with Down syndrome have mild to moderate intellectual disability. 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.”
