Prenatal Statistics
Around 400,000 women in Australia become pregnant each year. Many choose non-invasive prenatal screening (NIPT) to detect the likelihood of a chromosomal difference such as Down syndrome.
Most prospective parents undergo combined first-trimester screening and an estimated 25-30 percent of pregnant women in Australia choose NIPT.[1]
In Australia, it is estimated that 90% of prospective parents choose termination following confirmation of a high chance screening result for Down syndrome.
Modeling in the US and Europe estimates an overall reduction of babies born with Down syndrome as a consequence of selective termination. This reduction is estimated to be between 30 to 54 %. [2]
In 2021, Down Syndrome Australia conducted a national survey to explore expectant parents’ experiences of prenatal screening. We All Have a Lot to Learn surveyed 320 parents with a child under the age of 10 with Down syndrome. Responses revealed that prospective parents are commonly given misinformation about life with Down syndrome and that nearly half felt pressure from health care providers to terminate their pregnancy.
Families described significant gaps in the information and support provided during pregnancy:
- 49 percent of families felt pressure from their healthcare provider to terminate their pregnancy
- 42 percent of families said they received negative information about Down syndrome
- 42 percent of families were told information about Down syndrome by health professionals that they now know to be untrue
- 45 percent of families felt that they did not receive appropriate support during pregnancy
- 47 percent of families felt that they did not get the information they needed to understand Down syndrome during their pregnancy
- 69 percent of families felt that the information provided did not give them an understanding of the lived experiences of people with Down syndrome and their families.
Prospective parents make decisions about their pregnancies within a social context that displays bias and stigma against people with disability. A survey of community attitudes towards people with disability found that 25% of the respondents agreed with the statement that ‘people with disability are a burden on their families’. [3]
Read ‘We All Have a Lot to Learn’ here:
We All Have a Lot to Learn (PDF)
References:
[1] (Medical Services Advisory Committee, 2019)
[2] (de Graaf, Buckley and Skotko, 2015; de Graaf, Buckley and Skotko, 2020).
[3] (Bollier, 2021).
Bollier AM, Sutherland G, Krnjacki L, Kasidis V, Katsikis G, Ozge J & Kavanagh AM. (2021). Attitudes Matter: Findings from a national survey of community attitudes toward people with disability in Australia. Centre of Research Excellence in Disability and Health, The University of Melbourne. doi: 10.26188/15176013
Skotko, B., Levine, S. and Goldstein, R (2011) Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A, 155: 2360-2369
Last updated: June 2022