Abortion rates for fetuses with Down syndrome has skyrocketed. Is a lack of information and support to blame?
Aileen Ormoc
Contributor
Fetuses with Down syndrome are being aborted at an alarming rate, provoking accusations of back-door eugenics.
In America, 80 to 90 per cent
of women whose fetuses test positive for Down syndrome (DS) have chosen to terminate the pregnancy.
omen choosing to start families in their 30s and 40s may be a contributing factor to high DS abortion rates. By age 35, the likelihood of a woman having a child with Down syndrome is one in 350. At age 49, the chances are one in 10.
There are huge ethical implications for these selective abortion rates.
“I would use the word eugenical,” says Dr. Geoffrey Reaume, professor of Critical Disability Studies at York. The practice of selective DS abortions could very well represent a covert eugenics practice.
Reaume wholly supports women’s rights for reproductive choice. The discussion about selective abortion rates shouldn’t be centred around women’s choices. “There has to be more from the point of view of people with Down syndrome,” Reaume says, “and about what their lives are like.”
Aborting a child because of disability is a form of negative eugenics, Reaume says. The stigma associated with raising a child with DS discourages parents with so-called “genetic defects” to have children.
Improvements in screening procedures may have lead to increased abortion rates. With increasingly advanced technological equipment, doctors are able to detect fetuses with conditions like Down syndrome at a much earlier stage.
Reaume argues that screening procedures are a form of eugenics. Screenings, the professor says, allow people to decide which types of humans should not be born.
The screening technology does has positive uses, Reaume says, especially in the case of kidney diseases. However, he says “there needs to be more engagement with why people with disabilities aren’t more worthwhile than anyone else.”
There are three types of Down syndrome. Children with trisomy 21, the most common type, are born with an extra twenty-first chromosome. 95 per cent of people with DS have trisomy 21.
Characteristics of the condition include smaller limbs, larger body frames, and impaired cognitive abilities. People with DS are at an increased risk for congenital heart problems, ear infections, deafness, vision problems, and thyroid dysfunctions. No person with DS has all the symptoms.
Medical opinion has played a key role in abortion rates. In a number of cases, women who tested positive for babies with DS have been swayed by medical professionals to terminate. According to a 2000 study, 25 per cent of physicians had a negative bias when they explained prenatal test findings.
Doctors sometimes don’t mention parental success stories of children with Down syndrome. They also disclose the prenatal test results with phrases like “unfortunately, I have bad news.” Some even encourage abortion.
In a study by Dr. Brian Skotko, a geneticist at Boston Children’s Hospital, the diagnosis of 141 women revealed that information on the condition was either “incomplete, offensive, or inaccurate.”
Reaume thinks “women should have the right to choose whether they want medical support.” Parents should be well-informed, he says, and this means getting support from outside the medical community. “Giving parents a non-medical interpretation is very important,” Reaume emphasizes.
Negative representations of children with DS are the result of a society that has misunderstood disabilities for years. Outside of medical opinion, the media continue to perpetuate the idea that families raising children with disabilities lead difficult lives.
“People with disabilities have always been the ones that have endured the most prejudice,” says Reaume.
The rise in abortion rates may stem from the fact that most doctors lack the training experience to speak to people about intellectual disabilities. Forty-five per cent of obstetricians admit they received little training in presenting a prenatal diagnosis to expecting parents.
The lack of education surrounding DS is extremely problematic. Support groups are crucial to the parents’ understanding, but support group information is not always readily available to parents, especially if doctors fail to mention them.
Deciding to have a child with Down syndrome comes with its own set of challenges, but that’s not to say that it isn’t rewarding. Most children with Down syndrome lead long, successful lives.
Disability does not mean inability, but parents can be made to think otherwise. Today, children with disabilities are living longer lives, but that hasn’t changed everyone’s perspective. With eight out of 10 fetuses with Down syndrome being aborted, hopefully perspectives will change soon.
With files from the Canadian Down syndrome society
