This week at CWR we’re featuring two articles on closely related topics: the spread of non-invasive, highly accurate prenatal testing for Down syndrome (and the expected increase in abortion of unborn babies diagnosed with Down syndrome) and recent advances in the search for improved therapies to treat—and possibly reverse the effects of—the chromosomal disorder. We think the two pieces—both interesting and worthwhile on their own, and particularly illuminating when read together—shed light on different aspects of the complicated subject of how individuals with Down syndrome are viewed and treated by our society today.
Yesterday we published “Putting a Face on Down Syndrome” by Leslie Fain. It offers an overview of the latest prenatal tests used to diagnose Down syndrome, which are growing in popularity and are expected by many to lead to increased abortion rates for babies diagnosed with Down syndrome. In light of this growing threat, many families with children who have Down syndrome are seeing the importance of keeping the real face of Down syndrome in the public eye:
So what has contributed to putting a face on Down syndrome in the cultural imagination? For Van Waites, a Mississippi native whose 11-year-old son, Cole, has Down’s syndrome, inclusion, education, and technology can be credited with much of it.
“Children with any disability are being more included in school, sports. Kids with disabilities, any disabilities, are not being shoved in a corner anymore,” said Waites. In the past, there was not information available to people about Down syndrome, he said. “Just 20 years ago, Down syndrome kids were institutionalized. [Today there are] so many special therapies out there to help kids.” …
Amy Julia Becker, who has three children, including an eight-year-old daughter named Penny who has Down syndrome…said she can see both positive and negative aspects to highlighting the accomplishments of those with Down syndrome. “I was thrilled to see a person with Down syndrome run a marathon, but at the same time, the fact these things make news [bothers me.] They are just like other kids,” said Becker. “This isn’t exceptional.”
Technology has shown itself to be a blessing and a curse for those with Down syndrome, according to Becker. “It’s a better time than ever to bring a child into the world with Down syndrome, if you choose to bring that child into the world,” she said, citing the technologies and therapies that are now available. “The flip side is that because of advances, people can abort them more readily.”
Our second article on Down syndrome, published today, is “Prospective Chromosome Therapy for Down Syndrome: Hopes, Fears, and Ethics,” by Sister Renée Mirkes, OSF, PhD. Sister Mirkes, who is the director of the Center for NaProEthics at the Pope Paul VI Institute for the Study of Human Reproduction, analyzes research reported this summer by a team of scientists at the University of Massachusetts Medical School, research they believe may lead to therapies capable of reversing some or all of the effects of Down syndrome.
[Researcher Jeanne] Lawrence points out: “The silencing of trisomy 21 by manipulation of a single gene in laboratory cells surmounts the first major obstacle to development of potential ‘chromosome therapy.’” Her hope is that “for individuals living with Down syndrome, this proof-of-principle opens up multiple exciting new avenues for studying the disorder now and brings into the realm of consideration research on the concept of ‘chromosome therapy’ in the future.” …
Lawrence also forecasts the development of drug therapies modeled on her research. Relying on her team’s greater understanding of what goes wrong with trisomic cells, drug researchers should be able to expedite the development of pharmaceuticals that duplicate corrective genome editing. A future drug, for example, could target the neurons of DS patients. With its corrective mechanism, the drug could help to raise IQ enough to allow these individuals sufficient mastery of the “3 Rs,” as well as reasoning and social skills, to enable them to, say, drive a car or to live and work independently. …
Professor Lawrence, revealing the personal moral values that guide her DS research , states that, of all the rewards she has reaped from the long years invested in DS research, the greatest is hope. Hope that the therapeutic possibilities of chromosome therapy might discourage abortions as it encourages pregnant women to bring their babies diagnosed with DS to term.