Mr Michael Burgess1
1UBC, Vancouver, Canada
Biography:
Mike Burgess has spent the last 18 years designing and leading deliberative public engagement in Australia, Canada, Europe, the UK and the US. Topics include biobanks, use of health data in research, funding cancer drugs, newborn screening, childhood vaccination, and colon cancer decisions aids.
Abstract:
Aims:
This paper reports a public deliberation assessing recent features of biobanks that extend their usefulness. Biobanks have been well supported in previous deliberations from many countries. However, linking samples with data from electronic health records, collaboration with for-profit companies, and genetic sequencing with the potential to return individual results have either been controversial in previous deliberations, or were not considered.
Methods:
Utilizing a widely published approach to deliberative public engagement, a 4-day public deliberation was held in April/May 2024. The participants were recruited through a random list of 24,000 addresses in Indiana, with approximately 200 respondents from which 32 were selected, with overrepresentation of groups that would be under-represented in a statistical sample. Twenty-four people came to the deliberation for both weekends. Participants were informed via a 28-page information booklet and from 6 speakers. Deliberation alternated between small and large groups.
Results:
The participants generated conclusions that largely supported the innovations, with controversy persisting for research by for-profit researchers. Participants also were divided about the use of biobanks data and samples for behavioural research (less so for use in criminal investigations). While they supported the return of research results that indicate a high risk of a disease for which there is an available intervention, they were divided about findings of uncertain significance or where no effective treatment exists.
Conclusion:
Representatives from biobank management and Industry received the recommendations from the participants. These recipients reported that the recommendations were helpful as they considered how to structure governance of biobanks.