A new initiative for genomics policy and society
A new initiative for genomics policy and society
The ethical, legal and social implications (ELSI) of genomic research are challenging and affect everyone's lives.
The ethical, legal and social implications (ELSI) of genomic research are challenging and affect everyone's lives. Professor Don Chalmers of the UTAS Centre of Law and Genetics and Menzies Research Institute Tasmania is one of the authors of a paper published in Science today that outlines a new initiative to use web 2.0 technologies to build a "collaboratory" infrastructure for ELSI research globally.
The ELSI 2.0 Initiative will facilitate a variety of activities including networking, rapid response, "crowd-sourcing," modelling, forecasting, and the development of proactive strategies to coordinate and enable international ELSI research.
ELSI 2.0 is designed to catalyse international collaboration in ELSI genomics and to better assess the impact and dynamics of global genome research.
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 US-based advocacy organisation, 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 multi-country 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 Don Chalmers, a past Chair of the NHMRC Health Ethics Committee, believes that enabling large-scale global collaborations are essential for 'ELSI research to become more effective and efficient, leading to the development of better local, regional, and international practice and policy.'
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.'
Information Released by:
Fiona Horwood, Communications Manager
Phone: 6226 7751 Mobile: 0409 357 384
Contact:
Phone:
Email: