ELSI 2.0

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 webinars 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

Montreal 2013

Geneva, November 013

London, February 2014

Oxford, November 2014

Oxford, June 2015

Toulouse, December 2015

Osaka, November 2017

Join the ELSI2.0 maillist to share relevant articles, seminars, conferences, job positions etc with an international  audience of over 300 members.  Simply email helex@dph.ox.ac.uk with your interest to be added to the maillist.

We are looking for ways to get people and centres involved. Come and join us in this exciting endeavor! https://elsi2workspace.tghn.org

Building a national genome centre - citizen and policy perspectives

Dr Karoliina Snell, University of Helsinki, Finland

Thursday 23 November at 1pm (UTC/UK time/2pm CET)

GENOMICS ENGLAND

IDENTIFYING AND ADDRESSING ETHICS AND GOVERNANCE ISSUES IN THE UK’S 100,000 GENOMES PROJECT

Professor Mike Parker, Director of The Ethox Centre, University of Oxford

Monday 23 January

(Presentation with slides end at 21:00 - then lines opened for questions)

The recording is available for downloading here.

SHARING GENETIC DATA FOR INDIVIDUAL CARE : CONSENT & CONFIDENTIALITY

Dr Mark Taylor, University of Sheffield

21st February 2017 at 12.30

Due to an early bug in the system, Dr Mark Taylor’s slides were unable to be saved in conjunction with his presentation, however they are attached for you to review whilst viewing/listening to his presentation. Webinar Slides

THE 100,000 GENOMES PROJECT: OBSERVATIONS FROM WITHIN A GENOMIC MEDICINE CENTRE

Dr Leigh Jackson, South West Genomic Medicine Centre.

 Wednesday 22 March 2017 13:00 - 14:00 GMT

NEGOTIATING ETHICAL PRACTICE WHEN CLINICAL CARE DEPENDS ON BIG-DATA RESEARCH

Dr Sandi Dheensa, University of  Southampton

Tuesday 18th April 2017 13:00 - 14:00 GMT

Presentation slides and the recording are available to download.

CONSENT AND CONFIDENTIALITY IN GENETIC MEDICINE, DOES CLINICAL PRACTICE NEED TO ADAPT?

Professor Anneke Lucassen, University of  Southampton

Tuesday 23rd May 2017 13:00 - 14:00 GMT

 Webinar available on request - please email Imogen Holbrook.

PERSONALISED MEDICINE

THE IMPLEMENTATION OF PERSONALISED MEDICINE IN THE UK

Rob Hastings, Principal, Precision Medicine Catapult, POSTPONED from

Wednesday 15th June 13:00 - 14:00 GMT.  New date available soon.

PATIENT AND INTEREST ORGANISATIONS’ VIEWS ON PERSONALISED MEDICINE

Isabelle Budin Ljosne, Norwegian Institute of Public Health

Wednesday 5 July 13:00 - 14:00 GMT

FROM PRECISION MEDICINE TO ‘ALL OF US’: ADDRESSING THE NEEDS OF UNDERSERVED POPULATIONS

All of Us programme

Tuesday 29th August 13:00 - 14:00 GMT

COMMUNITY ENGAGEMENT

PSYCHO-SOCIO-ECONOMIC CHALLENGES ON THALASSEMIC PATIENTS: SHARING PROM PERIPHERAL REGION

Monday 15th May 14:00 Western Indonesian Time (or 8am in the UK)

The Indonesian Thalassemia Team (Purwokerto, Indonesia)  include Dyah Woro Dwi Lestari, Dinar Faiza, Lantip Rujito, Joko Setyono & Abdul Aziz Suparno.

Presentation Slides available here. No recording available - our apologies.

COMMUNITY ENGAGEMENT WITH THE NATIONAL CENTRE FOR INDIGENOUS GENOMICS

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.