Dr. Brian Skotko specializes in Down syndrome, and was interviewed for a recent Time magazine article. He welcomes the new test, but is also concerned about the potential downside. "81% of medical students reported they get no medical education about people with intellectual disabilities," says the article. Shotko wonders how doctors will counsel an expectant mother after a positive test result for trisomy 21. His own research has found that incidence of the condition dropped significantly with improved screening options, when projections based on maternal age show there should have been many more babies born with Down syndrome in recent years.
Could universal access to a safer screening mean the eventual elimination of all Down syndrome children? “As a clinician," he says, "I raise it as an open question. It's a question of which forms of life are valuable.”
As the mother of a child with autism I have been confronted with a similar question: if current DNA research led to gene therapy that could "cure" autism, would I want my son to receive the treatment? It is tough not to want the very best for our kids, and reducing the challenges they face in life is certainly an attractive proposition. But would he still be the same boy afterwards? I wonder if he would, or whether it would change him forever. Autism is part of what makes my child who he is: it is part of his world view and it has shaped his personality since he took his first breath in this world. Could I bear for him to lose something that integral to his very being? Could he?
