Workshop: Public Involvement and Governance in Population-Level Biomedical Research
Thursday, 09 January 2020 to Friday, 10 January 2020
Lady Margaret Hall, Norham Gardens, Oxford OX2 6QA
Hosted by email@example.com
Biomedical research increasingly focuses on the collection, collation, and analysis of big data for population-level research. However, such research poses challenges to traditional systems of research governance, pushing against existing conceptions of research participants and informed consent, and in doing so, raising concerns related to privacy, data protection, and trust. In response, models of public involvement in governance are being proposed to fill gaps in oversight and restore public trust.
In this workshop, we will examine these challenges and address the following questions:
- How should we characterise the range of governance and regulatory challenges that confront us with respect to population-level biomedical research?
- What approaches are currently being used to address these challenges and how, if at all, do these techniques incorporate elements of public involvement?
- Where are potential areas that public involvement might be introduced to meet these governance challenges?
The workshop aims to encourage attendees to reflect on and discuss international perspectives on public involvement as a solution to challenges in population-level research governance as well as to connect with a growing network of researchers addressing these challenges.
Jonathan Montgomery, University College London
Barbara Koenig, University of California, San Fransisco
Michael Burgess, The University of British Columbia
Haidan Chen, Peking University
Victoria Chico, University of Sheffield
Sarah Cunningham-Burley, University of Edinburgh
Nick Fahy, University of Oxford
Teresa Finlay, University of Oxford
Lucy Frith, University of Liverpool
Aaron Goldenberg, Case Western Reserve University
Nils Hoppe, Leibniz University Hannover
Michelle McGowan, Cincinnati Children’s Hospital
Michael Parker, University of Oxford
Barbara Prainsack, University of Vienna
Mahsa Shabani, University of Ghent
Effy Vayena, University of Zurich
Oli Williams, Kings College London
Mark Sheehan, University of Oxford
Sarah Chan, University of Edinburgh
Michael Dunn, University of Oxford
Sonja Erikainen, University of Edinburgh
Phoebe Friesen, McGill University
Karin Jongsma, University Medical Center, Utrecht
Matthew McCoy, University of Pennsylvania
Leah Rand, Brigham and Women's Hospital
Annie Sorbie, University of Edinburgh
Download the draft programme
This workshop is funded by a Wellcome grant: 219383/Z/19/Z