A better way to announce Down syndrome diagnosis after prenatal test

To read on ABC Australia website:

Down syndrome testing results delivery to change nationally following Tasmanian complaint

The results of prenatal testing for Down syndrome will be delivered differently, to ensure women are not swayed to terminate their pregnancies.

Changes follow a complaint to Tasmania’s Anti-Discrimination Commissioner around the use of negative language such as « risk » during a diagnosis.

The complaint was lodged by Launceston woman Rebecca Kelly, whose four-year-old son Ryan has Down syndrome.

While she did not undergo testing during her pregnancy, she said she was worried about those who did.

« [Women] are often given the diagnosis in negative terms, so first of all talking about ‘a risk’ — ‘I’m sorry, I have some bad news, the results are back and there’s a high risk’, » Ms Kelly said.

« We don’t talk about the risk of winning Lotto, we talk about the risk of people dying of cancer. Risk is inherently associated with bad outcomes. »

Possible breach of Anti-Discrimination Act: commissioner

Tasmania’s Anti-Discrimination Commissioner found the use of negative language in a Down syndrome diagnosis could breach the Anti-Discrimination Act.

It has prompted a change in the national guidelines for prenatal testing.

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists guidelines now point to more neutral terminology like « chance » or « probability ».

Ms Kelly hoped the move would reduce the stigma around a Down syndrome diagnosis.

« Rather than delivering it with some really outdated views about what Down syndrome is, to deliver it with very neutral language, to give people really good up to date information about what the condition is, » she said.

« ‘Risk’ sends a message that Down syndrome in itself – and intellectual disability more generally – is a really negative thing and it reinforces these really outdated concepts around disability. »

Down Syndrome Australia chairman Angus Graham agreed terms like « risk » were suggestive.

« ‘Risk’ is one of those terms which has a negative connotation, » he said.

« It’s important when expecting parents are delivered a positive result that they received balanced … information, that is accurate. »


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