Invited Presentation ABNA - Biobanking: Shaping the Future Together

Reflections on the informed consent process within a hospital-embedded cancer biobank   (#11)

S Hume 1 2 , AJ Mountain 1 3 , C Schneider 1 2 , C Gilfillan 1 2 , W Ng 1 4 , S Higgins 1 4
  1. Victorian Cancer Biobank (VCB), Victoria, Australia
  2. Eastern Health Tissue Bank, Box Hill Hospital, Victoria, Australia 
  3. Austin Health Tissue Bank, Austin Hospital, Victoria, Australia
  4. Cancer Council Victoria, Victoria, Australia

Informed consent is the process of informing potential research participants of the key elements of a research or biobank project, the participation involved and to seek participant approval. There are many models of Biobank consent, guided by robust, ethical and regulatory frameworks (e.g. NHMRC National Statement) which are constantly evolving.  

During the consenting process, Information involving complex scientific procedures, must be explained accurately, but in lay language or format that is understood by the participant. This allows the participant to be informed to make an autonomous decision to participate or withdraw at any time.  

For the past 18 years, the Victorian Cancer Biobank (VCB) consortium has used a harmonised consent model and Patient Information and Consent Form to manage broad consent for 40,000 VCB participants, supporting over 350 research projects.  

Through the experience at VCB, I have summarised the 3 keys to successful consenting:  

  1. Robust and interpersonal staff training,  
  1. Develop sensitive awareness of patient’s circumstances, including diversity in backgrounds (both cultural and educational),  
  1. Ensure engagement and liaison with clinical departments within health institution for accessing participants (or potentials) without affecting their clinical care.  

A well-delivered informed consent can have long-term impact to the participants, the biobank and research we are supporting, including public and sector trust, ultimately leading to successful outcomes for ethical research. The VCB experience shows this leads to the long-term success of critical research resources and participants feeling empowered within their health journey.