Kirsten Dean is a former journalist, and is currently the President of Down Syndrome Victoria. Her response, to last Sunday's article about the need for a national strategy for prenatal screening for Down syndrome is published today in The Sunday Age, under the headline "The future in our hands". Some extracts:
Some obstetricians are calling for more extensive prenatal screening for Down syndrome, but those who call for screening can't have it both ways. They can't argue that greater screening enables greater choice while at the same time promoting halving the birth rate through abortion. That's not individual choice, that's eugenics.
......
An ultrasound is not a photo opportunity — it is a medical test for foetal abnormality. Any referral should be accompanied by a detailed explanation of the purpose of testing, what the tests will involve and the possible consequences if a problem is detected. And women must understand that they have a choice. We do not believe this is always the case. Prenatal testing must always be voluntary. Moves towards routine screening must never remove the obligation to obtain informed consent.
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We believe the barriers that limit the opportunities of people with Down syndrome are constructions of society's making. As such, they can be dismantled. We should be working to change the world, not eliminate people with Down syndrome from it.
Read the full text here.
Down Syndrome NSW has very similar experience of prenatal enquiries.
The Sunday Age also published this letter from Damian O'Donnell:
I hope I never have to explain to my 11-year-old daughter, born with Down syndrome, the meaning of "More Down testing would 'halve' births" (Sunday Age, 7/12). What would she think?
The issue here is not testing with a view to termination, but education with a view to understanding. Governments could play a big role here.
Let's understand that people with Down syndrome aren't "trisomy 21s", they're not "Downies", and they are certainly not a burden on society. They are people with as much to contribute as anyone.
In Sydney today, the Sun-Herald did not publish this response from Down Syndrome NSW:
Louise Hill's article about a national strategy for prenatal testing for Down syndrome set out some salient points about access to testing, and reported the view of much of the medical profession, but failed to address the issues of greatest concern to those most affected by any prenatal testing.
Prospective parents need much better information than most of them currently get about the nature of the tests, what they can and cannot predict, all of the options they have, the nature of the condition being tested for (in this case, Down syndrome) and the potential consequences of whatever decisions they might make.
Down Syndrome NSW does not seek to stop prenatal testing, nor to instruct individual families on what decision they should make, but there are significant issues arising from our access to such technology that go largely ignored in the belief that the technology itself is a "solution" to a "problem".
Angela Blakston, writing in The Age earlier this week (12th December) said:"...... I feel saddened that, on one hand, we could see the unfairness and prejudice of the Moellers' situation. On the other, we send a message through the push for uniform, national screening that the life of a person with Down syndrome is, essentially, not worth living."
The many people with Down syndrome that we know judge their lives to be very much worth living. It requires greater thought and support for families wrestling with difficult decisions before we judge otherwise.
Our interest is in seeing that prospective parents have ready access to accurate, up-to-date, balanced information, to allow them to make as informed a choice as they wish.
If we need a national strategy for prenatal testing for Down syndrome, then perhaps we also need a mandate such as that provided by the Kennedy-Brownback Bill recently passed by the US Congress, to legislate for the right to fully informed consent about it.
But the Sun-Herald has today published a letter from Lorissa Barratt, who has a young child with Down syndrome:
The article by Louise Hall, 'Test all for Down, urge doctors. NSW Health's policy 15 years out of date" (The Sun-Herald, December 7), is out of date itself. The figures are closer to 75 percent of mothers who give birth to children with Down syndrome under the age of 35, and we never say "Down syndrome baby". The correct expression is "a baby with Down syndrome", as they are individuals first and foremost - the syndrome does not define them.
The article also fails to mention the increased incidence of miscarriage in the additional screening tests, which is about 2 percent and often means women who may have had difficulty conceiving will choose not to have the tests.
Most of all, the article neglects to mention that babies born with Down syndrome are very much loved members of their families with a lot to offer society Families of children born with Down syndrome take offence at the notion that more tests are a useful way to "halve the number of babies born with the incurable genetic condition".
Edit, 17/12/2008: Abigail Elliott's letter to the editor was published in The Age today:
I just want the best for my son
Thank you to Angela Blakston (Focus, 12/12) and Kirsten Deane (The Sunday Age, 14/12) for highlighting the issues involved in genetic testing for Down syndrome. As the mother of a gorgeous eight-month-old baby boy, Willem, with Down syndrome, who came as a surprise, I have been trying to discover why I feel emotionally charged about genetic testing.
When people talk about genetic testing in terms of choice, that choice leads, more commonly, to termination if the baby has Down syndrome. If I had had an accurate screening result, my husband and I would have had to decide the future of our son. Now that he is here and I have seen the love, warmth and care that he has brought, I cannot bear to imagine him not here.
Having a child with a disability undoubtedly brings challenges, many compounded by the assumption that one would terminate if testing had found a problem. This unspoken devaluing of people with disabilities is a significant component of the struggle and sadness one feels on finding out your child has a disability. The longer that Willem is in the world, the more we realise that he is just our gorgeous son, whom we want the best for.
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