New paper on ELSI 2.0 published in Science
ELSI 2.0 – A New Initiative for Genomics Policy and Society. ELSI 2.0 will make it easy for an ELSI scholar in Africa to connect with other scholars around the world or to tap into resources not otherwise readily available. For a U.S.-based advocacy organization, the Collaboratory will provide essential services to extend the reach of work otherwise locked up in the academic literature. This paper is authored by Jane Kaye, Eric M Meslin, Bartha M Knoppers, Eric T Juengst, Mylène Deschênes, Anne Cambon-Thomsen, Donald Chalmers, Jantina De Vries, Kelly Edwards, Nils Hoppe, Alastair Kent, Clement Adebamowo, Patricia Marshall, and Kazuto Kato.
A funder in the European Union could request a rapid response team to respond to ad hoc, short-notice requests related to emerging issues or to forecast important policy directions.
A patient could become an active participant in ELSI research or find literature and experts on subjects such as direct-to-consumer testing.
For a scholar in Asia looking to fund a multicountry effort, the Collaboratory could help identify funding sources, collaborators, and workshops for the idea. Scholars could choose to be observers or builders and creators (posing projects for a workspace or a crowd-sourced effort) or to motivate collaborators who would not otherwise be accessible (clinicians, patients, policy-makers). In this way, ELSI 2.0 will continually build and support global ELSI research and policy-making capacity.
Dr Jane Kaye of the University of Oxford, says ‘ELSI 2.0 will connect stakeholders in research from around the world allowing us to develop new ways of working together. By using 2.0 technologies we can develop global perspectives and solutions to pressing issues in genomics’.
Professor Eric Meslin of Indiana University said: ‘The ELSI 2.0 collaboratory recognizes that while the two decade-old model of ‘anticipating and addressing’ issues locally has been valuable, science and society would jointly benefit from a creative update to allow research to be translated and implemented on a global scale”.
Professor Bartha Maria Knoppers of McGill University believes the ELSI 2.0 Collaboratory ‘will be a global workspace available for everyone to enable more effective translation of knowledge and direct input into genomic research policy making. Incorporating and transforming insights and experiences from around the world can only make for more workable approaches that transcend jurisdictions and academic boundaries.’
Professor Eric Juengst regards ELSI 2.0 as being highly innovative as ‘It will not just be a discussion board but will allow real time collaborations to enable capacity building between people across the globe, whether they be healthcare professionals, researchers, patient advocacy groups, patients or research participants, policy makers or funders. It is an opportunity to use technology to break down barriers and to facilitate the sharing of knowledge and resources in new and equitable ways.’
The full paper can be read at www.sciencemag.org.
(Note: There is also an open workshop on ELSI 2.0 in Rotterdam on 26 June. Click here for further information.)
Planning Committee:
Jane Kaye, University of Oxford, UK, Eric M. Meslin, Indiana University, USA, Bartha M.Knoppers McGill University, Montreal, CAN,Eric T. Juengst, University of North Carolina, Chapel Hill, USA; Anne Cambon-Thomsen, Université Paul Sabatier Toulouse, France; Donald Chalmers, University of Tasmania, Australia; Jantina De Vries,University of Cape Town, South Africa; Kelly Edwards, University of Washington, USA; Nils Hoppe, Leibniz Universitaet Hannover, Germany; Alastair Kent, Genetic Alliance UK; Clement Adebamowo, University of Ibadan, Nigeria; Patricia Marshall, Case Western Reserve University, USA; Kazuto Kato, Kyoto Universty, Japan.
CONTACT:
Dr Jane Kaye
Director, HeLEX (Centre for Health, Law and Emerging Technologies)
Department of Public Health
University of Oxford
Rosemary Rue Building
Old Road Campus
Oxford OX1 7LF
Tel: +44(0)1865 287898
Email: jane.kaye@law.ox.ac.uk
Newly released is a report of the Expert Group on Dealing with Ethical and Regulatory Challenges of International Biobank Research. It is entitled Biobanks for Europe - A challenge for governance. Dr Jane Kaye, HeLEX Director, was the rapporteur. (Update: 
