Workshop: Public Involvement and Governance in Population-Level Biomedical Research

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.

Keynote Speakers

Jonathan Montgomery, University College London
Barbara Koenig, University of California, San Fransisco

Confirmed Panellists

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

Organisers

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

Programme

Download the draft programme

  This workshop is funded by a Wellcome grant: 219383/Z/19/Z