Published On February 17, 2016
IN 2003 KURT KONDRICH WAS TOLD THAT HIS NEWBORN, CHLOE, HAD DOWN SYNDROME. In the years that followed, Kondrich felt that much of what he learned from medical practitioners about his daughter’s condition was in stark contrast to what he observed at home. Chloe was healthy, attentive and even mentally advanced enough to read as a preschooler. “These children were labeled retards and mongoloids in past medical literature,” says Kondrich. “Chloe is anything but.”
Kondrich, his wife, Margie, and son, Nolan, have become advocates for people with Down syndrome, and their work led to “Chloe’s Law,” which requires medical providers in Pennsylvania to give more information about the condition when they deliver that diagnosis to an expectant mother.
Currently, when the parents hear that the child will have Down syndrome—the most common genetic abnormality found during prenatal testing—many choose to end the pregnancies. Kondrich and the law’s other supporters wanted to make sure that parents considering an abortion hear a more positive story—what a child with Down syndrome might experience physically, mentally and socially, and what resources are available to assist them. A child growing up with the condition in 2016, says Kondrich, might go on to live a comparatively normal life and, in some cases, might even attend college or get married.
As of last October, 11 more states have adopted similar laws, and others are considering them. But while the letter of these laws is straightforward—more information for expectant mothers—their implications are complicated, and the fights to pass them have become mired in controversy.
Can a state discourage abortion after a diagnosis of Down syndrome? Those modelling their laws after 2012 legislation in Massachusetts more or less sidestep the issue. That law calls for the patient to be presented with resources and information about the condition, updated by medical experts and Down syndrome organizations every year. “This bill wasn’t pro-life or pro-choice—it was pro-information,” says Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital.
Other states, including Indiana, Louisiana and Texas, call for the woman to receive information and resources, but stipulate in the law that materials should not present abortion in a positive light. Such an approach, critics argue, aims more to prevent abortions than to accurately counsel the patient.
Arthur Caplan, director of Medical Ethics at the Langone Medical Center of New York University, believes that the laws are morphing into “a pro-life movement at the local level.” In Ohio, which passed a version of Chloe’s Law in 2014, lawmakers are now considering legislation that outlaws abortion outright if it stems from a positive test result for Down syndrome.
A danger of such laws, says Caplan, is that they could insert politically motivated information into the conversation between physician and patient at a critical time—a dangerous precedent, he says, as more and more genetic prenatal tests become available. “The type of information and the manner in which it is delivered should be the physician’s domain,” says Caplan.
Caplan believes that, despite their good intentions, legislative attempts to script what a physician says could pose a sleeping threat to physician neutrality. In fact, he says efforts such as these laws may be “one of the most important events in the history of genetic testing and counseling.”