Name of Researchers: Samantha Edwards (PhD candidate, UWA), Prof. Nigel Laing (supervisor, UWA), Dr Gina Ravenscroft (supervisor, UWA), Dr Alison Archibald (supervisor, University of Melbourne) and Dr Ben Kamien (supervisor, UWA).
Invitation:
My name is Samantha Edwards and I am the Chief Investigator for this study. I am a genetic counsellor of 15+ years with an interest in reproductive genomics and supporting people on their journey to parenthood. For the past 5 years I have specifically been working towards increased access for all Australians to reproductive genetic carrier screening.
You are invited to participate in an online survey and interview (by phone or video-conferencing) looking at Australian individuals’ opinion and experience of genetic counselling and reproductive genetic carrier screening (RGCS) and how genetic counsellors should be involved if screening is available at a nationwide scale. We would like to hear from you if any of the following apply:
· you have had reproductive genetic carrier screening,
· you are a genetic counsellor with experience in reproductive genetic carrier screening,
· you are a healthcare professional who offers reproductive genetic carrier screening to your patients,
· you work in a laboratory performing reproductive genetic carrier screening,
· you work for a genetic support group organisation
· your role involves development and implementation of state or national policy regarding reproductive genetic carrier screening and the genetic counselling workforce.
Aim of the Study (What is the project about?)
Reproductive genetic carrier screening (RGCS) is used to identify people who are carriers of genetic conditions. RGCS informs couples of their risk of having a child with a severe genetic condition. In 2019 professional guidelines were updated to recommend Australian healthcare professionals offer RGCS to all women planning or in early pregnancy. An emphasis was put on informing genetic carrier couples of available reproductive options and supporting decision-making in line with the couple’s values.
