Unconscious bias in prenatal diagnosis leading to abortion

Children with a prenatal diagnoses of disabilities are disproportionately killed by an abortion. When Kim C. and her husband Darrin became pregnant with a daughter with Down Syndrome, they initially faced a negative response from their doctor. As Kim explained, “When I got our diagnosis, I immediately felt unqualified and feared I would be a bad parent. That’s not an unusual response.”

Her experience turned around when Darrin assured her that their child would be loved, she received support from other parents and organizations, and she switched to a more positive healthcare team:

As soon as Dr. Y walked in he congratulated me on my daughter. His response was a beautiful reminder that I was carrying a little person and not just a list of medical problems. He said that he had a sister with Ds and that raising a child with Ds would be more similar than different from raising our other children. He made sure we had a good support system and plenty of resources, and he invited us to an upcoming Walk for Ds fundraiser.

Kim C.

“Recommendations to improve the patient experience and avoid bias when prenatal screening/testing” reflects Kim’s experience. Meredith et al., share that, “expectant parents are more likely to describe the diagnosis experience as negative than positive,” and it reveals an, “unconscious bias against people with disabilities.” In response, they (also parents of disabled children, as well as care providers of differing disciplines) came together to create recommendations for professionals to solve the problem. 

Up to 19 recommendations are listed, grouped together in the following sections: “Create better patient experiences” (1-6), “Healthcare, training, and accountability” (7-11), “Create, enforce, and fund policies and guidelines” (12-17), and “More robust data collection and research” (18-19). Researchers begin with individual interactions and education of the provider and patient, leading up to appropriate medical training and more systemic interventions involving policies and further research. It is shown that combating negative bias against disabled people involves systemic change of the entire medical field, and involves addressing more than just one-off experiences of an unfortunate few. 

The foundation of these recommendations for a more positive patient experience rests on challenging bias. By educating the provider on the positives, not just the challenges, of parenting and caring for a disabled child, providers in turn can change their behavior and mindset in addressing the topic with patients. With this, Meredith et al explain, they can “[e]mpower parents to direct the conversations and set the parameters based on their preferences” (as stated in Recommendation 5 section e). 

Therein lies the rub. There is no stance taken against abortion as part of the issue of bias. Abortion is assumed to be a valid, unbiased “choice.” They begin with challenging the assumption that a disabled child is inherently unwanted, but do not challenge the mindset behind killing a disabled child through abortion if they become unwanted after counseling. 

This is in contrast to Kristina Artuković’s testimony, which insists that eugenics-based abortion is always inherently ableist. In fact, she shares how people willingly refused to “connect the dots” between eugenics (the killing of “unwanted” humans) and abortion in her case:

When I share that I was pressured to abort because of Down syndrome, the standard response from the pro-choice crowd is “That is not what pro-choice means. Your choice should have been respected.” But they are missing a crucial point: the pressure from the medical community was not about me. My husband and I were pressured simply because we were an annoying obstacle between our baby and those who’d prefer him dead.

Kristina Artuković

Meredith et al make strides in improving the experience of receiving prenatal diagnosis. Surely it is better to be informed of how the life of a child with disabilities can look for better and not only worse, rather than suggesting from the start the child is better off dead. It is also crucial that parents of children with disabilities know where to obtain assistance and that their care provider is a safe person for their child should they continue the pregnancy. All of this could lead towards fewer children with disabilities or terminal illnesses being denied medical care.

Yet the paper still perpetuates the ableist belief that the right to life of a child with disabilities depends on their wanted-ness. With abortion as an option – even if fully informed consent is in place – it is undeniably a choice rooted in bias. This is the lived reality of every parent of a child with disability who continually hears the suggestion their child is better off dead, or is shamed for “selfishly” choosing life. As Artuković sums up: 

Disability-selective abortion adds an asterisk to the phrase “every child a wanted child” leading to a footnote that says: as long as they’re not disabled. 

Kristina Artuković

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