Large-scale genetics research
For many years, we have taken a lead in supporting work to generate key genetic and genomic datasets, and make these data rapidly available to the research community. We are also supporting work to explore the ethical and governance challenges raised by this research, and develop good practice guidance for the research community.
Pre-publication data sharing for community resource initiatives
Through our support of the Wellcome Trust Sanger Institute, we played a lead role in the Human Genome Project. Working with partners in the international consortium, we were instrumental in brokering the Bermuda principles in 1996, which ensured that the human genetic sequence was made available immediately in public databases with no terms or conditions on its use.
In January 2003, we convened a meeting in Fort Lauderdale, Florida to discuss data sharing from large-scale biological research projects. The resulting Fort Lauderdale principles introduced the concept of a 'community resource'; endorsed pre-publication data sharing for large-scale genome sequencing projects, and set out the key roles of resource providers, users and funders within a system of tri-partite responsibility.
In May 2009, we co-sponsored a workshop held by Genome Canada to revisit the Fort Lauderdale principles. The resulting Toronto statement, which was published in Nature in September 2009, supports pre-publication data sharing for community resource activities.
Ethics and governance issues arising from genome-wide association studies
Large-scale genome-wide association studies, such as those conducted through the Wellcome Trust Case Consortium, have generated major breakthroughs in our understanding of the genetics of common diseases. Such studies are, however, raising complex ethical and governance issues which need to be addressed.
In July 2008, we held a Frontiers meeting, 'Genome-wide Association Studies and Ethics', that focused on some of the major issues facing genetics research. Participants highlighted pressing questions around consent, feedback of incidental findings, data sharing and oversight mechanisms. We subsequently commissioned research to examine these issues in more depth.
In light of this, we have been taking forward a programme of work to examine these key issues. Initial priorities have been:
- working with the research community to enhance data access and governance arrangements for major Trust funded genetics and cohort studies
- examining the complex questions around the handling of incidental findings emerging from research, with a view to developing guidance for researchers.
Both of these workstreams are ongoing and further information will provided as they progress.