Centre for Law and Genetics

The Biobank Project Tasmania

The Biobank Project – A Community Consultation

External Collaborators / Partners: Professor Simon Foote, Professor Michael Burgess
Funding Source: ARC/NHMRC grants
Commencement Date: 2012
Project Status: Finished

Researchers

Project Background

This project was undertaken in order to engage with the Tasmanian community and to assess community attitudes and perceptions towards biobanking. The specific goal of this project was to provide an evidence base for the development of a governance framework for a Tasmanian population-wide biobank that is practically implementable, complies with legal and ethical requirements and reflects the hopes and concerns of the Tasmanian community. The development of the governance framework is still ongoing, supported by strategic research funds from the University of Tasmania.

In addition to this specific goal, the unique dataset created through this project has contributed to our ongoing research agenda (particularly our general research relating to governance of biobanking and commercialisation of biomedical research). The project itself formed part of the CLG's Personalised Medicine project as well as the NHMRC funded project investigating the Genetic and Bioinformatic Analysis of Complex Human Diseases.

This project was a complex undertaking, which required a large team and significant time and effort. It was largely a collaborative effort between the CLG, the Faculty of Law and the Menzies Institute for Medical Research (Our close collaborator Professor Simon Foote was formerly the Director of the Menzies; Joanne Dickinson and Rebekah McWhirter are researchers at the Menzies as well as being members of the CLG.)

About the Project

The Biobank Project Tasmania - A Community Consultation was a community engagement exercise conducted to obtain insight into the community views, values and attitudes about a potential Tasmanian population biobank. The first element of the project was a specific type of consultation called a deliberative democracy event, which is characterised by a number of key features:

  • Participants represent diverse interest groups in society (rather than being statistically representative)
  • Participants are provided with education on the topic (booklet, presentations and Biobank Project Tasmania website)
  • Deliberation is largely participant driven (assisted by a facilitator, in this case CLG collaborator Professor Michael Burgess.)
  • The aim is to formulate resolutions that the group as a whole can support, although consensus of all issues broad issues is not a key goal and points of disagreement are recorded
  • Participants create and ratify group resolutions

The second element of the project comprised two online surveys to assess broader community views. One was an interactive blog style long-answer survey, and the other multiple choice and short-answer. The purpose of these surveys was to gauge attitudes from a larger sample than possible in the deliberative democracy.

Project Co-ordinators

  • (with Tess Whitton)
  • James Walker
  • Hannah Vasicek
Other Team members
  • Margaret Boots
  • Lokesh Kashyap
  • Kelvin Markham
  • Emma Quarmby

Research output

A number of specific publications have resulted from this project. The project also remains relevant and continues to inform our research on biobanking and more generally on participant attitudes to biomedical research.

Publications

Don Chalmers, Rebekah E McWhirter, Dianne Nicol, Tess Whitton, Margaret Otlowski, Michael M. Burgess, Simon J Foote, Christine Critchley and Joanne L. Dickinson, 'New avenues within community engagement: addressing the ingenuity gap in our approach to health research and future provision of health care' October (2014), 1 (3) Journal of Responsible Innovation doi 10.1080/23299460.2014.963002

Rebekah E McWhirter, Christine Critchley, Dianne Nicol, Don Chalmers, Tess Whitton, Margaret Otlowski, Michael M Burgess and Joanne L. Dickinson, 'Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool' (2014) 4 Journal of Personalized Medicine 459-474 doi: 10,3390/jpm4040459

Dianne Nicol, Christine Critchley, Rebekah McWhirter and Tess Whitton ‘Understanding public reactions to commercialization of biobanks and use of biobank resources’ (2016) 162 Social Science & Medicine 79-87 doi:10.1016/j.socscimed.2016.06.028