Invitation to participate in a survey on the use of genomics in newborn bloodspot screening
We invite you to participate in a research study exploring the ethical, equity, social, and legal considerations of incorporating genomics into newborn bloodspot screening (NBS) in Australia. This study aims to understand and prioritise Australian stakeholders’ perspectives on these issues using a survey method called Best-Worst Scaling (BWS).
The study is part of the gEnomics4newborns research project [2022/MRF2015965] which is exploring how ethics and equity might be explicitly considered alongside the effectiveness and cost-effectiveness of the use of genomics in newborn screening. More information on gEnomics4newborns is available here: https://genomics4newborns.sydney.edu.au/
You have been invited to participate in this study as you are a health professional, researcher, policy- or decision-maker involved in newborn screening, genomics, or health technology assessment. The project has received ethics approval from the Human Research Ethics Committee of The University of Sydney [2024/HE000854].
The survey is anonymous and takes 10-15 minutes to complete. You can access the survey by clicking here or scanning the QR code below:
Your participation is voluntary and greatly valued. By sharing your insights, you will contribute to shaping ethical and equitable approaches to genomic newborn screening in Australia.
Please feel free to forward this invitation to colleagues or contacts who may also have relevant expertise, as their perspectives would be highly valuable to this research. Eligible participants include: Health professionals (including midwives, genetic counsellors, and those experienced in NBS), researchers involved in studies or clinical care of children with genetic conditions, and policymakers across federal, State and Territory governments involved in NBS, genomics, and/or Health Technology Assessment (HTA).
Further details about the study can be found in the Participant Information Sheet. If you have any questions, please feel free to contact [email protected].
Please complete by 28th February 2026.
Thank you for considering this invitation.