The Impact of "KIDS"

The Impact of "KIDS"   I can't read something like "Testing Curbs Some Genetic Diseases," which ran in the Associated Press this morning, without thinking back to last January 22. The manner in which some genetic diseases has been "curbed" is through a vast expansion of genetic testing and aborting almost every child identified to have genetic mutations--or, in the case of Down syndrome, an extra chromosome. For the second year in a row, the NRLC offices were graced by the presence of a large contingent from "KIDS" (Keep Infants with Down Syndrome). And for the second year in a row Rep. Cathy McMorris Rogers (R-Wa.), who has a son with Down syndrome, met with and spoke to the group. I asked KIDS co-founder Eileen Haupt, who is the alternate director to the NRLC board from Vermont, to summarize the time together. Eileen wrote, "Congresswoman Cathy McMorris Rodgers of Washington State's 5th congressional district was the special guest at the KIDS event, bringing her 3-year-old son Cole, who has Down syndrome. Rodgers is the founder and co-chair of the Congressional Down Syndrome Caucus. The caucus educates members of Congress about Down syndrome and promotes policies that would enhance the quality of life for individuals with Down syndrome." "Rogers spoke about legislation in Congress affecting individuals with Down syndrome and others with special needs. She mentioned the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which was signed into law in the Fall of 2008. This legislation requires families who have received a diagnosis of Down syndrome or other conditions be given up-to-date information, but now requires funding. Another piece of legislation that has been introduced is the ABLE (Achieving a Better Life Experience) Act of 2009, which establishes tax-exempt accounts for the care of family members with disabilities." My extended family is very familiar with children born with devastating genetic anomalies. I also have friends whose children have Down syndrome. So I know of what I speak and know how couples might be tempted to abort children found to have something like cystic fibrosis or thought to have Down syndrome. Those who fought their through these doubts and difficulties did so in no small reason because of their faith and because they were blessed with a support system of relatives, friends, and something like KIDS. God bless them all. Finally, what does it say to the children who evaded the screening? This is no small issue, both for it does to the children and how it coarsens us as a people. The Associated Press story I alluded to at the beginning includes a quote from Dr. Barron Lerner, a Columbia University medical historian, who wrote an article that appeared in the October 22, 2009, edition of the New England Journal of Medicine. "If a society is so willing to screen aggressively to find these genes and then to potentially have to abort the fetuses," he observed, "what does that say about the value of the lives of those people living with the diseases?" Contact: Dave Andrusko Source: NRLC Publish Date: February 17, 2010 Link to this article.   Send this article to a friend.