‘If there were a cure for your child that would fundamentally change who they are, would you welcome it?’

Lisa Belkin, writing in the New York Times Motherlode blog, wonders what parents think of recent research news out of Stanford University that offers the eventual possibility of enhancing cognition for their children with Down syndrome.

She quotes Jenn Power, a Canadian mother of twin boys with Down syndrome writing on the Contrarian website, as saying she greeted the Stanford announcement with tears. Power says she feels people with intellectual disabilities play an “irreplaceable” role in creating a “more humane, compassionate and hospitable society,” and she worries that cognition research encourages society to overlook the value of her children’s lives.

An excerpt from Power’s post:

In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet … these people have Down syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual ‘impairment’ gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society.

Reader comments are critical of Powers, saying she is guilty of “the worst type of paternalism and selfishness” for suggesting she would deny her sons access to medications that might enhance their intellectual capabilities.

Earlier post: Parents divided on hypothetical cure for Down syndrome

This entry was posted on Monday, January 11th, 2010 at 3:27 pm and is filed under Down syndrome, NOT2BEMISSED, public attitudes, research news. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.