Does prenatal testing make you a better parent?
By Louise Kinross
I wrote about an experience I had with prenatal genetic testing in 1993.
There was no “counselling” from the genetics counsellor—no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. We were given statistics and two pamphlets: one had a two-paragraph description of “defects” associated with Down syndrome. The other, a pink brochure, was about termination. It was a “mini-labour,” it said, making it sound as inconsequential as a manicure. When I couldn’t decide whether to have an amniocentesis, because I didn’t want to miscarry the baby moving inside me, an obstetrician was brought in to berate me.
I had the amnio, which came back normal, and my son was born with a genetic syndrome. No one had explained that the test didn’t identify a host of rare genetic conditions.
Given my experience, I was fascinated by a new book called The Double Bind of Disability: How Medical Technology Shapes Bodily Authority.
“The double bind is the fact that disabled people, or their prospective parents, are expected to be responsible for ‘managing’ disability in an ableist world, but at the same time their lived experience is never taken seriously as knowledge about disability,” says author Rebecca Monteleone, associate professor of disability and technology at the University of Toledo.
“Someone else, like a medical professional, is considered the authority over disability, and they essentially determine the ‘correct’ way to manage it—through detection, mitigation, cure, elimination—but hold the individual personally responsible for complying.”
Monteleone looks at how medicine situates disability within the body.
“How are we defining the problem of disability?” she asks. “If the problem is the biophysical, we’re creating technology that aims to prevent, limit, or eliminate it. But if we identify the problem as ableism in society that prevents people with disabilities from full participation, we come up with different solutions that aren’t so medicalized.”
In her book, Monteleone looks at how science and cultural values play out in prenatal testing; deep brain stimulation; and do-it-yourself artificial pancreas systems.
“Prenatal testing is changing how we understand disability and what it means to bring a child with a disability into the world,” she says.
Non-invasive prenatal testing is now standard care. “Because prenatal testing exists for certain conditions, there’s an assumption that those conditions are worth identifying and intervening around,” she says. “We don’t ask questions about why we’re testing for these conditions,” and people living with the conditions, or their families, play no role in test development.
In interviews, women told Monteleone they felt pressure to test. First, because it was recommended by a doctor, but also because they felt “to not have that knowledge would be irresponsible… If a child was born with a genetic disability, it would be your fault."
This idea that a woman controls the health of her unborn child hearkens back to the mother blame we saw when some religions explained congenital disability as a woman's moral failing. "We look for reasons why difference exists and associate it with something bad and then create this blame apparatus," Monteleone says.
Parents are right to fear judgment if they don't use prenatal testing or terminate when a genetic condition is diagnosed.
For example, a 2006 survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics and family medicine to rate three scenarios in which a woman's child is born with a disability. Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than a woman who wasn't offered testing.
“The implication is that if you don’t test, you don’t care about your child’s health, which isn’t the reason that people opt out of testing,” Monteleone says.
In prenatal testing, doctors and labs are positioned as the experts on disability and disabled perspectives—through stories of affected children or adults—usually don't exist.
“There’s an absence of what I call embodied disability in the clinic,” Monteleone says. “It’s noticeably missing. In my opinion, it’s not really informed consent if the lived reality of disability is not included.”
Genetics counsellors follow a “non-directive” approach to counselling which “often manifests as seeing medical information as real and lived experience as biased and coercive."
The growth of lab medicine means doctors rely less on clinical judgment and more on technologies that quantify and measure diverse characteristics in people. “Genetics seems more real and neutral than an individual’s interpretation of how things feel in their body,” Monteleone says. Hard science “is appealing because it has the feeling of certainty. Of course, our genes are interacting with our environment, so we really don’t understand a lot of it.”
Fear of litigation is one reason genetics counsellors stick to medical facts. One told Monteleone: “If I don’t tell you the worst of it, I have not done my job, and from a litigation perspective, it would be particularly dangerous for me.”
While a parent may be referred to a disability group, “some genetics counsellors still see disability communities as having a combative relationship with them,” Monteleone says. “That they’re pushing back against their careers or don’t understand what they do, or assume they’re always interested in termination. There’s a perceived animosity.”
In her book, Monteleone shows how the rationale for prenatal testing is built on the idea of the ’acceptable bodymind.' “Salient to this model is the construction of a normal/abnormal binary, in which able-bodiedness and able-mindedness are fetishized,” she writes in her book.
That binary is “a relatively recent phenomenon, as we moved away from thinking of an ideal body that was unattainable to taking precise measurements of people and then seeing who fits in the middle,” she says. “The emergence of this idea of the norm created new categories for identifying people and tagging those who fall outside.”
Ableism and capitalism are intertwined in modern society, Monteleone says. Human value is defined by productivity. “It’s someone who can contribute to society, often through paid work, and people who fall outside of that often receive the label of disability. There’s a moralizing element that we must independently support ourselves to be seen as full members of society. If you don’t, or won’t, achieve independence, you’ve personally failed in some way.”
Independence is a strong theme in children’s rehab. “Adults talk about their negative experiences with medical procedures and therapies in the pursuit of independence,” Monteleone says. For example, “full-time wheelchair users talk about the amount of time and effort they spent, and shame they experienced, around trying to learn to walk, and how liberating it was to let go of that and become a wheelchair user.”
That is the kind of disability knowledge “we need to listen to when developing medical technology and interventions,” Monteleone says.
Ideas that favour individual autonomy over community carry over to the culture of prenatal testing. “There’s a strong value around personal responsibility, that if you bring a child into the world who won’t be independent under neoliberal capitalism, there are consequences,” she says.
In Monteleone’s interviews, prospective parents said the lack of firsthand disability stories in prenatal clinics was a huge gap. “They want to know if I continue with this pregnancy and have a child with a congenital difference, what will their life be like?”
Monteleone stresses that technology is never neutral but reflects the cultural values of its inventors. It’s interesting to note that the global prenatal and newborn genetic testing market was worth US$7.58 billion in 2023, according to Zion Market Research, and is expected to reach $US26.87 billion by 2032. Testing is big business and governments support it as a way of reducing health costs.
To improve prenatal testing, Monteleone says: "I would like to see a better incorporation of that lived experience. We need to value lived experience as essential information for people who are going through a pregnancy where they receive a diagnosis. It could be the first time they’ve ever heard of this disability.”
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