Enhancing communication using eConsent and dynamic consent
Australian Genomics Health Alliance (Australian Genomics) coordinates, funds and conducts research across a network of more than 80 academic, healthcare, and community partners and collaborators across Australia. Australian Genomics is exploring ways to improve the consent process and to convey the complexities of genomic research to study participants (or their parents/guardians) by applying eConsent to the study recruitment process in three different ways:
- Rare disease and cancer flagship projects (eConsent for remote / telehealth study recruitment)
- CTRL (Control) (dynamic)
- Mackenzie’s Mission Australian Reproductive Genetic Carrier Screening Project (online study recruitment).
Australian Genomics is trialing the implementation of eConsent and dynamic consent. Early indications are that they are feasible and acceptable to the range of stakeholders involved across the three different Use Cases, and within the setting of genomic research where there is sensitivity over the personal nature of data being collected and created.
The Australian Genomics program carries out multi-site research across all Australian States and Territories. The Human Research Ethics Committees (HRECs) and study site governance offices involved in reviewing research utilising eConsent have been supportive of its use. They recognise its value as a tool to guide and record information being given and received but that it does not replace the importance of participants being able to speak with a person about their involvement in the study. They also recognise the ability for eConsent to reach potential participants over a greater geographical area than paper-based consent used alone.
Working with HRECs early and providing them with working versions of the digital frameworks to allow them to see it in its actual state rather than as a transcript, have been beneficial.
Australian Genomics’ vast network has been enabled by collaboration with and leveraging of partner research programs, to get the most value from the resources allocated to the nation-wide genomic research program. Creative solutions like eConsent and dynamic consent were developed in this context to improve research reach and impact.
Whilst there are vendors with some knowledge of this environment, it is an emerging area in need of greater development, in particular with the integration of data capture with analytical platforms to streamline data usage.
Dr Matilda Haas
Program Coordinator, Australian Genomics
Dr Angela Watt
Director Research Governance and Ethics, Royal Melbourne Hospital