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Exploring new ways to manage consent in genomic research and other large-scale data sharing research initiatives.

The talk will be presented by Dr Matilda Haas, a Program Coordinator from Australian Genomics.

Australian Genomics is a national health services research network building the evidence to inform the integration of genomic medicine into mainstream healthcare. Established in 2016 through a National Health and Medical Research Council grant, the research network is prospectively recruiting up to 5,000 participants for genomic testing through 18 different rare disease and cancer clinical flagship projects.

Since 2018 Australian Genomics also administers Genomics Health Futures Mission research projects including Mackenzie’s Mission, Massimo’s Mission, the Cardiovascular Genetic Disorders Flagship, and the national rapid genomic diagnosis program for critically ill children (the Acute Care Genomics study).

Given the complexities of the consent process for genomic testing in both research and clinical settings, new ways of approaching consent are being sought. eConsent and dynamic consent are two current models being trialled by Australian Genomics. Matilda leads the development and implementation of the online, dynamic consent and patient engagement platform named CTRL (‘control’).

This talk will focus on Australian Genomics’ novel approaches to consent and discuss their applicability to large-scale and ongoing data sharing research initiatives like genomic research and biobanks. These approaches may also prove great value in maintaining study recruitment during the COVID-19 pandemic, given the limitations placed on face-to-face appointments and specialist clinics.

Event Details

Date: July 13
Time: 12:00 pm - 1:00 pm