“It’s not good news. Your baby has Down syndrome… and I’ve scheduled a termination for tomorrow.”
Zoey was at work and her doctor phoned with the results of the prenatal testing of her first child. Based on a recent survey from Down Syndrome Australia, Zoey’s experience is not isolated. Following a test showing a high likelihood of Down syndrome, doctors are more likely to give parents information about abortion than they are about Down syndrome.
The survey of 320 parents revealed that in 52 per cent of cases, the doctor spoke to them about termination, compared to only 37 per cent where the doctor spoke to them about Down Syndrome. 49 per cent of families reported feeling pressured by their healthcare provider to abort the child.
The reported pressure to terminate wasn’t exactly subtle.
Ellen’s GP told her: “Get it fixed and don’t think about it.” Another set of parents were told: “just abort and try again. You are young. A disabled child will ruin your life. Just abort and try again.”
Governments can do better than trumpeting ‘search and destroy’ screening as a form of medical treatment or progress.
With advice like this ringing in parents’ ears, last week’s announcement by Federal Health Minister Greg Hunt, that preimplantation genetic diagnosis would now be covered by Medicare, is particularly troubling.
Mr Hunt said that genetic conditions such as Spinal Muscular Atrophy, Cystic Fibrosis, Fragile X syndrome and Huntington’s disease “lead to beautiful young children that are born and struggle, and either have lifelong debilitating conditions, or lose their lives at a very young age, or an early age”.
Mr Hunt said that the Medicare-covered screening meant parents could go ahead with IVF, “knowing that this beautiful young child will be born free of the condition which might otherwise lead to an agonising one or two years of life.”
That’s not entirely accurate. Preimplantation genetic diagnosis doesn’t provide healing or treatment. All it does is screen embryos and mark certain ones to be discarded.
Rather than meaning that “this beautiful young child will be born free of the condition,” preimplantation genetic diagnosis will mean that the “beautiful young child” is not born at all.
Where Hunt described the decision to cover the genetic screening of all IVF embryos under Medicare as “a new hope for Australian families”, families surveyed by Down Syndrome Australia reported not having their decision to keep a child with a disability respected.
Also problematic was what Down Syndrome Australia referred to as the “routinisation of screening services,” which they saw as compromising the autonomy of prospective parents.
They also found that “messages about the benefits of genetic research and prenatal screening” may reinforce negative attitudes in the community and fears of parents.
Put another way, the characterisation of prenatal screening as “standard care” and the promotion of its benefits contributes to the stigma faced by people with disabilities and their families.
Moya (not her real name) said she lost count of the number of times she had to reiterate her decision to keep her child. She asked if her choice could just be noted in the file, so she didn’t have to be asked at every appointment. She was told that the doctors needed to have their bases covered.
“Having to so frequently confirm our decision not to terminate the pregnancy felt like our decision as a family was being questioned and invalidated each time, rather than respected,” Moya said.
Many of the doctors who did provide information about Down syndrome portrayed it in a pessimistic light. 42 per cent of families said they received negative information; the same number said they received information about Down syndrome that they know now to be false.
This is what one set of expectant parents said of the “information” provided by their doctor: “We were told she would never walk, talk, she would be deaf, she wouldn’t be able to breast feed, she would have numerous heart surgeries and be sick all the time. She would get cancer.”
Another parent reported: “No current information was provided about Down syndrome, and I was told that most children with Down syndrome end up living in an institution.”
We can and must do better for parents who receive life-changing news that their unborn child has been diagnosed with a genetic condition. Doctors can do better than providing inaccurate information aimed at trying to coerce parents towards abortion and treating those who choose to keep their child as irresponsible.
Governments can do better than trumpeting ‘search and destroy’ screening as a form of medical treatment or progress. And the rest of us can commit to never, ever condoning attitudes that suggest any child would be better off if they had never been born.