Helene Hayman spoke about the role of the EGC at UK Biobank's successful annual meeting in Manchester.
The EGC Secretary met with colleagues Dr Tohru Masui and Dr Yusuke Inoue from Japan biobank to discuss a variety of matters, including the governance and use of biobanks in Japan and how these compare to UK Biobank.
EGC Chair Helene Hayman presented a talk entitled ‘Ethical and Governance Aspects of Research Data: experience from UK Biobank’ at the European Medicines Agency workshop 'Identifying opportunities for ‘Big Data’ in medicines development and regulatory science'.
Baroness Helene Hayman has been appointed Chair of the UK Biobank Ethics and Governance Council with effect from 1st January 2016. She will be joined by Dr Eric Meslin, who takes on the role of Vice Chair.
The EGC Chair and Secretary will speak at a symposium organised by the Taiwan Biobank Ethics and Governance Council, having been invited to share lessons learnt from the UK Biobank EGC’s experience.
The EGC is funded on a five-year cycle and is currently in the process of a review. The independent review panel met in February and will make recommendations to the funders; the EGC expects to hear the outcomes in May.
This month the EGC adopted a new access oversight model. Under the new scheme, the EGC will no longer routinely check the research applications as they come in. Instead, the burden will be on UK Biobank to alert the EGC to any applications that raise significant or novel issues of ethics or governance. In this way, it is hoped that the EGC can focus its limited resources more efficiently and effectively on those applications that give rise to major issues (relative to the interests of participants or the larger public interest).
Professor John Gallacher (Director of the MRC Dementias Platform UK (DPUK) and a member of UK Biobank’s Steering Committee) and Dr Catherine Moody (MRC) joined the EGC at its December meeting. The DPUK is a multi-million pound public-private partnership, developed and led by the Medical Research Council, to accelerate progress in, and open up, dementias research. The aims of this major initiative are early detection, improved treatment and, ultimately, prevention of dementias. UK Biobank is at the heart of DPUK; the Platform will draw on the range of information held by UK Biobank including genetic, lifestyle, imaging and the answers to the cognitive function questionnaire.
To mark its 10-year anniversary the EGC held an evening public lecture (given by Professor Alastair V. Campbell on the topic ‘Biobanks – can ethics keep pace with the science?’) and a two-day international conference on ‘Past, present, future: the ethics and governance of big biobanks’. Videos and a report of the event are available on the conference page.
The EGC Secretary attended the Parliamentary Office of Science and Technology (POST) event on ‘Big data and governance: balancing risks and rewards’. POST’s work on ‘big data’ gave rise to a number of POST Notes, including one dedicated to the issue of biobanks that features UK Biobank.
The EGC Secretary also attended UK Biobank’s first participants’ meeting, which was held in Edinburgh. The event was significantly oversubscribed, resulting in UK Biobank deciding to hold an additional meeting in the city in January 2015; this further meeting was attended by EGC member, Mrs Margaret Shotter.
In September the EGC held its quarterly meeting in Manchester and members took the opportunity to visit the imaging assessment centre at the UK Biobank facility in Cheadle. In addition, the EGC access subgroup held a separate meeting with UK Biobank colleagues, Dr Tim Peakman (Deputy Chief Executive Officer), Mrs Lorraine Gillions (Research Access Administration Manager) and Ms Erin Scobie (Access Administrator), to have in-depth discussions on the access process.
The EGC Secretary attended UK Biobank's Frontiers meeting in London, the purpose of which was to encourage the use of the resource by the research community. Attended by a few hundred people, the audience was largely from academia but a few commercial groups were also present. Videos from the event are available on UK Biobank’s website.
This month the EGC Chair, Vice Chair and Secretary received visitors from the Taiwan Biobank Ethics and Governance Council. The group discussed the respective remits and methods of working of their committees, with a view to learning from each other’s experience.
The EGC Secretary attended the meeting ‘Longitudinal population studies: a targeted approach to ethics and regulation’. This meeting was a joint initiative of the national infrastructure BIOBANQUES (France), Public Population Projects in Genomics and Society (P3G, Canada) and BBMRI-LPC (FP7, EU).
The EGC Chair, Professor Roger Brownsword, presented a paper at the Centre for Medical Ethics and Law, University of Hong Kong workshop on biobank governance.