The trouble with genetic testing on unborn babies

By Emma Rennie

Children with Autism
Should a fetus with a mental disability be denied the opportunity of life? Photo via sunnycoastkids.com.au

Should fetuses with mental disabilities be aborted? It’s a tricky and emotional subject, and not one to be taken lightly.

In researching my article about the genetic risk test that has been developed for Autism Spectrum Disorders (ASD), an interesting ethical question arose.

One day, we might know enough about ASD to test for it in utero. Should this day ever arrive, should a parent ever find out their fetus will be born severely autistic, will they terminate?

The issue is more of an ethical minefield than an ethical debate. Still, it’s an important question, and with ongoing advances towards genetic testing for ASD, it’s something we as a community should start talking about.

The issue of genetic screening for ASD can’t be looked at in isolation – there are a multitude of other genetic disorders. Some, such as Down Syndrome, are already screened for during pregnancy as a matter of course. My question taps in to a much wider debate: should fetuses be aborted if parents know they will be born disabled?

The part of me that likes to consider itself fairly liberal in matters of ethical debate screams, “FREEDOM OF CHOICE FOR ALL! Let women (and men) decide what is best for them, and whether or not they have the capacity to parent a disabled child. If they can’t, let there be no judgment; accept that they made a difficult choice in a difficult situation to the best of their ability.”

Certainly I’m pro choice in any other situation, so I must also be pro choice in this matter.

Nevertheless, there is another part of me that says, “But what if they weren’t going to abort before the test? What if they’re only aborting because they don’t want a disabled child? Why shouldn’t that disabled fetus be given a chance at life if a non-disabled fetus would have been kept?”

Dianne Verstappen, clinical director of Aspire Early Intervention, said the children with ASD who I had met during our interview, “can have, you know, a perfectly near-normal or normal life.” Indeed, when I met them, most of the children didn’t come across as having a debilitating condition. They were just exuberant children having fun and showing off the items they’d brought in for news.

We are all more than the sum of our DNA.

But this adds another element of difficulty to the ethical dilemma. To know that a fetus, if born, would spent its entire life unable to function without assistance would be heartbreaking, and very troubling for anyone to hear. Often, however, this isn’t the case. Symptoms such as an inability to talk or participate in social situations can often be improved or alleviated through early intervention and therapy programs.

Dianne spoke of one little girl she began working who was only twelve months old. The infant had shown some early symptoms of autism but was never diagnosed with a condition. Dianne thinks this is because the early intervention was successful in teaching the girl how to speak and function in a typical way.

Of course, there will sometimes be only so much that early intervention or other therapy can do. If a child is severely autistic, for example, they may never learn to function normally, and may never be able to support themselves. But does this then mean they should never be born?

fantastic article I read by Stella Young, editor of ABC’s Ramp Up, made the point that many women who are informed by doctors that their fetus has a disability are given the worst-case scenario.

She wrote, “What a doctor, even one who specialises in my condition, will tell you about my life will paint a vastly different picture to the one I’ll give you. The information given to families is generally given by medical professionals who may know the pathology of certain conditions inside and out, but it doesn’t mean they know what it’s like to live with these conditions, or what it’s like for our families. Contrary to many assumptions made about lives like mine, I do not suffer.

Ms Young, who has a physical condition called Osteogenesis Imperfecta, summed up her article with the line, “We are all more than the sum of our DNA.”

And while, ultimately, it may be true that parents dearly love their disabled children, there is no denying that to have a disabled child of any kind is to have a life of worry, stress and difficulty. It’s expensive, it’s time consuming, and it’s absolutely emotionally draining. For this reason, I would never presume to tell someone that they have no right to terminate the pregnancy of a disabled fetus.

Yet, at the same time, I have trouble believing that a child with autism or any other disability does not have the right to life. A child with a disability sees the world in a different way to the typical person, and they should have the opportunity to contribute something to our society that a typical child may never have been able to.

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One response to “The trouble with genetic testing on unborn babies

  1. I love the last sentence of you article. Imagine a world without people such as Tim Page, Temple Grandin, Darryl Hannah. It is speculated that others including Mozart, Henry Ford, Andy Warhol, Abe Lincoln would have been diagnosed with Autism or Aspergers. These individuals may have been “high functioning” but they gave our society a great deal. We as a society probably need to take the “good with the bad”, have less discrimination against those we view as not normal and more support for carers.

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