Australian Genomics: National Clinical Consent Consultation

Australian Genomics would like to formally invite you to participate in the consultation about the newly developed consent package as a part of the National Clinical Consent for Genetic and Genomic Testing project. The purpose of this consultation is to gain the insights of stakeholders potentially involved in the process of genetic or genomic testing, including community members, clinicians, patients, patient advocacy groups and peak bodies. We believe your input is vital to ensuring the appropriateness of the consent package we have developed.

 

Acquiring informed consent is a crucial step in the genetic and genomic testing processes. There is no standardised process for obtaining consent in Australia at present, which leads to inconsistencies in the patient experience and makes it complicated for clinicians to share data and expand their knowledge of human genetic disorders. It is important that these resources are thorough but easily understandable to help patients make informed decisions about testing. The focus of this project has been on including information on data and sample sharing and storage, reanalysis of data, recontact of patients, and usage of data for future research. This project also aims to provide materials to support non-genetic health specialists who order genetic and/or genomic testing.

 

We acknowledge that the NSW Ministry of Health and Australian Genomics have conducted similar projects in recent years. However, we would appreciate your input into this updated consent package.

 

The package consists of the following documents:

 

Please use the survey linked below to provide your feedback on the consent package. There is an option to complete a brief review or give detailed feedback. We believe it will take around one hour to review the documents and complete the brief survey, and around two hours to review the documents and complete the detailed survey. You will have the option to save and come back to finish the survey later.

 

https://redcap.mcri.edu.au/surveys/?s=PAPEKCETKNK9F7NY

This consultation closes on the 15th of January 2023.

 

Please email Keri Finlay via [email protected] with any questions or concerns.

 

Thank you in advance for your time and expertise in the development of these resources. We look forward to reading your feedback.

 

Best,

 

Julie McGaughran