New Tests, Same Old Bias and Misinformation

October is National Down Syndrome Awareness Month, a time to recognize the accomplishments of people with Down syndrome and advocate for better resources, services, and research. And so the timing of Jane Brody's lazy and poorly researched piece on "Breakthroughs in Prenatal Screening" was particularly unfortunate.
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October is National Down Syndrome Awareness Month, a time to recognize the accomplishments of people with Down syndrome and advocate for better resources, services, and research into improving the health and wellbeing of people with Down syndrome and their families. And so the timing of Jane Brody's lazy and poorly researched piece on "Breakthroughs in Prenatal Screening" was particularly unfortunate.

The essay begins with an anecdote about a friend who, more than 30 years ago, was advised that amniocentesis was "too dangerous" and ended up giving birth to a child "severely affected" by Down syndrome. "Today," Brody continues, "my friend's story would have a different trajectory." Thanks to the availability of safer and less expensive screening tests, she would have known her fetus had Down syndrome and "given the option to abort the pregnancy."

Brody goes on to sing the praises of the latest developments in prenatal screening. She could not have done it better if she were being paid directly by the pharmaceutical corporations pushing these products, some of which are not yet approved for safety and effectiveness by the Food and Drug Administration. Brody's primary source is Dr. Diana W. Bianchi, hardly an objective observer since she serves on the advisory board of a company selling fetal DNA tests. Bianchi's partisan views are rounded out by information lifted directly from the March of Dimes website.

Although she focuses on Down syndrome -- a condition caused by an extra copy of the twenty-first chromosome -- the screenings Brody is writing about are capable of detecting more than 800 genetic disorders. Readers who wade far enough into the essay will learn that the latest test can screen for such lethal conditions as Trisomies 13 and 18, as well the relatively inconsequential, such as a missing sex chromosome. By lumping these conditions together, Brody fails to discriminate between conditions that cause suffering and death, and those, like Down syndrome, that result in livable disabilities.

Like so many other popular science writers, obstetricians, and genetic counselors, Brody returns so incessantly to Down syndrome that it comes to seem the exclusive target of a search-and-destroy mission. As author Michael Berube writes, our public conversation on genetic testing fixates on Down syndrome "as if that were the one card in Fate's arsenal about which every prospective parent must learn as soon as possible." Berube published these words nearly 20 years ago. It is discouraging to realize how little has changed, despite efforts to raise awareness that many people with Down syndrome are capable of living full, satisfying, and relatively independent lives.

Brody appears to lack an understanding of the difference between a genetic condition and a disease. Recently I have written about the category of "healthy disabled," which refers to those people who live with disabilities like deafness, blindness, autism, and Down syndrome, without other medical complications. Down syndrome results from a chromosomal anomaly (and it does increase the likelihood of certain disease), but it is not itself a disease. To link Down syndrome so persistently to a language of disease, defect, deficiency, and risk, as Brody does, creates an implicit negative bias, despite her acknowledgment that some women may choose to continue pregnancy following a diagnosis.

Let me be clear here that I am not against prenatal testing. I am not opposed to research to improve the health and cognitive functioning of people with Down syndrome. I believe all women have the right to end a pregnancy for any reason. But I'm also aware of the way that language has very real consequences for how expectant parents understand a Down syndrome diagnosis and whether people with Down syndrome are understood as deserving of the same rights and opportunities as their fellow citizens or unfortunates afflicted with a condition that is slated for extinction.

Brody ends her piece with a litany of medical advice, all lifted directly from the March of Dimes website. Much of the advice is questionable, especially for expecting parents who might want to experience childbirth as something other than a routine, highly medical procedure. Her last recommendation is the best line of the essay: "Join a volunteer organization or volunteer group that can provide support and education about how best to care for the baby's specific needs."

I'm struck by how poorly Brody follows her own advice. Nowhere in this piece does she include information about pregnancy, birth, or medical care provided by any of the national organizations devoted to Down syndrome research and awareness (or any other genetic condition named in the essay). And where are the voices of parents of children with Down syndrome or people with Down syndrome themselves who might have opinions about developments in prenatal testing?

What happened to Brody's friend who gave birth to a child with Down syndrome? Does she regret not having an amniocentesis? How much does Brody's friend believe her child's "severe" disability was caused by genetics, and how much by absence of opportunities for therapy, education, and socialization that are now available to many people with Down syndrome? Would she have chosen to abort her child if given the opportunity, as Brody implies? Speaking anecdotally, I have never heard the parent of a child with Down syndrome say she wished her child had never been born. Perhaps if Brody had spent a little time talking to people with Down syndrome, their families and supporters, she might be better equipped to answer these questions.

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