A New Initiative for Genomics Policy and Society
ELSI 2.0 aims to stimulate creativity, communication and collaboration on genomic research and policy. Built as an online workspace open to all potential users, it provides opportunities to be involved and to contribute to policy and practice domestically, regionally and internationally.
ELSI 2.0 also seeks to provide information on research resources and prospective projects, work spaces for online collaboration. It includes educational webminars and workshops, and as well it supports strategic activities including: reviews and meta-analyses of ELSI research and policy; development of foresight papers; rapid response action teams to advise on specific issues; international memos for identifying emerging policy issues and priorities, and modelling exercises for the construction of international frameworks and approaches
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. 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.
The full paper can be read at www.sciencemag.org.
The following meetings have been held:
Geneva, November 2011
Rotterdam June 2012
Kyoto January 2013
Geneva, November 013
London, February 2014
Oxford, November 2014
Oxford, June 2015
Toulouse, December 2015
We are looking for ways to get people and centres involved. Come and join us in this exciting endeavor! https://elsi2workspace.tghn.org
Planning Committee to date:
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 University, Japan.