If we had access to genetic testing before my child was born, we might have terminated the pregnancy.

This statement makes my chest tighten with anxiety; and my body heavy with remorse.

Not because I disagree with people’s right to make choices about their body including their pregnancies. I support sexual and reproductive rights.
I feel remorse because of my old views and beliefs about the value of disabled lives. Beliefs I would vehemently deny, but which existed if you scratched just below the surface.

Beliefs that became obvious when my children were identified as neurodivergent. Beliefs that could have been dangerous when a doctor presented us with the results of a genetic test showing my baby had extra DNA that would impact on his cognitive and physical development.

Thankfully, this happenned after his birth.
Thankfully, by the time I read the phenotype information about our child’s genetic difference (ID, DD, ASD, ADHD, GAD – so many acronyms), I was starting to acknowledge and confront my ableism. I was starting to connect with proud disabled advocates. I was starting to acknowledge my own neurodivergence.

One of my children is picking up a shell, holding my hand.
One of my children is picking up a shell, holding my hand.
I think of my divine child with his gentle hugs, and sincere yet cheeky nature, and the remorse runs deeper.

What if we had genetic testing available before birth? Would my feelings about my much-wanted child change?

I think of the announcement this week that Australia’s first Autism Biobank is opening, with promises that collecting DNA samples of children can deliver ‘early identification’. The unspoken but obvious potential is for prenatal screening.
And my anxiety rises and my chest tightens. Because I know firsthand how genetic testing for ’causes of autism’ plays out in everyday lives.

I acknowledge and appreciate that genetic testing in my son’s toddlerhood helped us connect with a small community of people with knowledge of the possible health challenges related to his chromosome difference. I see value in genetic information.

But the fact remains, having that genetic information in the hands of ableist antenatal providers and ableist parents, might have prevented his life.

Thinking back, the one thing that shifted my ableism has been exposure to the strong proud voices of disabled people, asserting that all lives have value. Asserting their right to live. While disabled voices are not heeded, and healthcare professionals remain ableist, genetic databases specifically targeting disability are dangerous.

I know and have experienced the benefits of access to genetic information. 

But still, I know the risks.

My child may have been a statistic of prenatal testing. I feel sick. I promise to do better.

 


 

* Un-boxed brain wrote about Australia’s autism biobank, early identification and interventions here.

* In case I’ve not been clear, I absolutely support women’s reproductive rights. This post is about the risks of genetic databases and testing in an ableist society, and is written in the context of my own privilege and family.

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2 thoughts on “Genetic testing, an autism biobank, and a baby

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