We have learnt a lot from the research conducted in Mackenzie’s Mission so far. One important learning is that while genetic carrier screening results provide valuable information, they can also have long-lasting emotional and practical impacts for people as they plan their families.
This means it is important to continue conducting research in Mackenzie’s Mission to understand the long-term outcomes of having genetic carrier screening. This includes:
The research will help shape how genetic carrier screening is provided in Australia. Our findings will ensure that genetic carrier screening is available in a way that supports wellbeing, promotes informed reproductive decision-making, and provides the right care to people when it’s needed most.
We need your help to do this research!
Hearing your thoughts and experiences of having genetic carrier screening is so important. You can find out more about the long-term research was are conducting in the tabs below.
The latest Mackenzie’s Mission survey is now closed. Thank you to the over 2500 people who answered the survey!
We are currently inviting Mackenzie’s Mission participants to take part in interview about their experiences of genetic carrier screening. You might receive an email or a phone call about taking part, so please look out for this.
Soon, we will be contacting people who received an increased chance genetic carrier screening result in Mackenzie’s Mission to learn more about their pregnancy plans and outcomes. Please look out for an email or phone call about this over the next few months.
Taking part in the research is optional, and you can opt-out of receiving invitations at any time.
This research is being led by Erin Tutty, a PhD student. Erin was previously part of the Mackenzie’s Mission research team, which inspired her to research the long-term outcomes of the project for her PhD. Her supervisors are A/Prof Alison Archibald, A/Prof Sharon Lewis, A/Prof Belinda Dawson McClaren and Prof Martin Delatycki.