Recent advances in genetics and understanding how the brain works raise the possibility that intellectual developmental disabilities are treatable and some actually may be reversible.
“That is just mind-boggling and it is dazzling,” Elisabeth Dykens, Ph.D., director of the Vanderbilt Kennedy Center for Research on Human Development, said last week during the Kennedy Center’s annual Science Day.
Yet “families struggle to obtain services,” said Dykens, Annette Schaffer Eskind Chair and professor of Psychology & Human Development, Psychiatry and Pediatrics. “Stigma is still rampant … (There are) enduring health and mental health disparities and few opportunities for employment.”
What are the ethics of increasing the cognitive abilities of people with Down syndrome, for example, “when we don’t also improve their life circumstances?” she asked. “If they remain isolated at home, without a job and depressed, what have we done?”
Nearly 200 people listened to scientific presentations and viewed dozens of research posters at the Student Life Center during the Jan. 15 event, organized by a committee chaired by Kennedy Center investigator Jennifer Blackford, Ph.D., assistant professor of Psychiatry.
Dykens’ theme of progress amidst challenge was echoed by a new Kennedy Center video produced by center investigator Blythe Corbett, Ph.D., assistant professor of Psychiatry, and shown at Science Day.
In the video, Alan Guttmacher, M.D., director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, predicted that “genomic approaches and other powerful new tools … will allow progress that was previously beyond our reach.”
“Having a mutation doesn’t mean we can’t influence it,” continued Karoly Mirnics, M.D., Ph.D., James G. Blakemore Professor of Psychiatry and associate director of the Vanderbilt Kennedy Center.
“We can. We can manipulate the environment and we can actually change the outcomes and influence the outcomes.”
These advances have “been an enormous breakthrough, an epochal breakthrough,” added Tim Shriver, Ph.D., chairman and CEO of Special Olympics and a member of the Vanderbilt Kennedy Center’s national scientific advisory board.
“I only hope that all of the science will be marshaled in an unconditional way to support the quality of life of people with intellectual and developmental disabilities and forever open our eyes to the goodness, hopefulness (and) happiness of these important and unique citizens,” Shriver said.
To see the video and Dykens’ keynote address, go to http://kc.vanderbilt.edu/site/newsandevents/podcastandvideo.
The Vanderbilt Kennedy Center is supported by major grants from the National Institutes of Health, including 5P30 HD015052.