Down Syndrome Queensland understands that access to prenatal screening and diagnosis is important for many families.
We respect the right of women to undertake prenatal testing, if they choose to do so, and to make decisions about whether or not to continue a pregnancy based on their own circumstances and beliefs.
Research suggests that currently, many families may not be making fully informed choices about prenatal testing.
We are concerned that some families may be making decisions that are based on negative community attitudes and inaccurate, outdated information about Down syndrome.
Non-invasive prenatal screening marketing material often focuses on the relief and reassurance that prenatal screening can offer, but there is very little out there about the 2–3% of unexpected results that might raise more questions than answers.
There may be misinformation, or worse still, silence, about screened-for conditions.
For more and more prospective parents this isn’t a hypothetical question, as technologies such as non-invasive prenatal screening become more widely used.
Through our work supporting families through prenatal screening and diagnosis, we often hear stories of misinformation about life with Down syndrome and an assumption that following a diagnosis, prospective parents would choose termination.
We also hear stories of choices not being supported or respected; and frequently, families have to stumble upon support services themselves rather than being referred to them as part of ongoing care during the remainder of their pregnancies.
Down Syndrome Queensland, in partnership with the Department of Health, has been funded to deliver a project which will improve the training and education available to healthcare professionals, to enable access to accurate and balanced information at the time patients are considering prenatal screening.
This much needed project supports health care professionals offering pre-natal care and navigating prenatal screening technology.
It’s an area that can be divisive; it can be hard to talk about and difficult to think about.
While pre-natal screening technology can give us a chromosome count, when prospective parents ask ‘what does that mean for my child?’ often the answer is far less clear.
This project brings together critical clinical knowledge with the lived experiences of people with chromosomal conditions such as Down syndrome.
Prospective parents making decisions about the future of a wanted pregnancy need accurate and balanced information, the right support and time; it’s hard to imagine a more high stakes scenario.
In this episode, we will hear from a number of people with lived and professional experience in the area of prenatal screening.
From today, prospective parents and healthcare professionals can now access up to date, evidence-based and balanced information on one reputable website.
This site brings together a range of written resources and videos, along with clinical training options, so that the prenatal screening journey can be one that is informed, supported and respectful of patient experiences and choices.
Visit the Prenatal Screening website for all the information.
Other links and resources from today’s episode:
Human Genetics Society of Australia
Genetic counsellors are specialists in supporting prospective parents to make informed decisions about prenatal screening in keeping with their beliefs and values.
The capacity of public genetic counselling services does not usually extend to pre-test counselling.
Prospective parents can access a private provider through the Human Genetics Society of Australasia website.
Through the Unexpected
Through The Unexpected provides a list of supports for professionals with the aim of supporting the workforce that supports people through prenatal screening and diagnosis experiences. This list can be found at the Through the Unexpected website.
This podcast is a production of Down Syndrome Queensland.
If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email - engagement@downsyndrome.qld.org.au.
For more information please visit the DSQ website, or follow us on Facebook and Instagram.
Mentioned in this episode:
Down Syndrome Queensland
