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.
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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 keri.pereira@vcgs.org.au |