Is Down Syndrome counseling inadequate?


The vociferous response to my post Should we lament the disappearance of Down Syndrome? advocating choice in terminating a Down Syndrome pregnancy alerted me to an organized effort by DS parents to “educate” everyone else. It reminds me of, and shares many characteristics in common with, efforts by pregnancy “crisis centers” to “educate” women experiencing unwanted pregnancies. In both cases, the efforts are rather transparent attempts to get women to change their minds.

The movement was profiled in a 2007 piece in The New York Times.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

Their concern is hardly selfless:

A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain…

“If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,” said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.”

Interestingly, the vast majority of parents who elect to terminate are not complaining about being “uneducated” either at the time of termination or years later. And certainly no one in the community of DS parents is complaining about the “education” of those who were encouraged to continue the pregnancy. In fact, the only complaint emanating from the community of DS parents appears to be that people who make different decisions must be receiving inadequate education.

The approach, on view in the comments section of my previous DS post, is fairly formulaic:

… [T]he richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.

The effort to “educate” other is remarkably intrusive:

… [P]arents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results.

The medical community has been unimpressed. They understand that their obligation is to present unbiased information, not to present false hope in an effort to sway their patients’ choices.

Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision…

There is certainly no objective evidence that Down Syndrome counseling is inadequate. There is only the conviction of some DS parents that people who make a different choice are making the wrong choice. Their effort to “educate” other parents is nothing more than an attempt to pressure them, and, as such, it is wrong.