Providing clear and concise information during the consent process.
Genomic testing raises complex issues, with a number of possible testing outcomes and potential implications for the individual and their family. Providing patients with clear and concise information during the consent process is critical to support well-informed decisions about testing.
Currently, genetic services within Australian states and territories take an individualised approach to clinical genomics consent. This can be a barrier to the flow of health information across jurisdictional borders and can confuse the interpretation of laws and policies about sharing genomic data for clinical or research purposes.
A clinical genomic consent form for national use across genetic conditions.
The Australian Genomics National Consent Working Group was formed with the remit of undertaking a consultative process to inform the development of a clinical genomic consent form for national use across genetic conditions.
Current clinical and research consent forms were evaluated by the Working Group through a survey process. Survey data was used to draft a consent form which was reviewed by the Working Group. An information package to support the consent form was developed using a similar iterative consultation processes.
The consent package has now been finalised: see below item 1 – consent form, and item 2 – supporting information. We would be grateful for feedback on this consent package from interested individuals and organisations.
How to provide your feedback.
Download from the links below:
Submissions will close on Sunday 17th of June.
Thank you for your input into this initiative.
Questions? Please contact Working Group coordinator, Keri Pereira at firstname.lastname@example.org