Their mandate is to develop tools (documents, softwares or websites) related to studies, biobanks, research databases and other similar health and social research infrastructure. These tools should be relevant for use at any one stage of the biobank lifecycle (conception, building, use or closure of a biobank) – however, tools distantly related to biobanking should also be considered if they address wider analytical areas.
The International Steering Committee of P3G has developed the following criteria to evaluate tools to be included in the Toolkit and the Lifespan. These tools must be: 1) relevant to studies, biobanks, research databases and other similar health and social research infrastructure; 2) useful for use across different projects; and 3) updated regularly (when relevant). Tools must also be free, and available in open access.
Centre of Genomics and Policy Programme
(led by Bartha M. Knoppers)
The Centre of Genomics and Policy of McGill University is one of the two independently funded research pillars of the Public Population Project in Genomics and Society (P3G). For 2012-2014, it will be composed of three platforms: 1. ELSI toolkit for the BIOBANKS 101 project; 2. ELSI tools for a new paediatric research platform; 3. ELSI-IT software and templates for access review committees. It actively collaborates in the BioSHaRE.EU, Canadian Partnership for Tomorrow and ENGAGE projects.
Maelstrom Research Programme
(led by Isabel Fortier)
Located at the Research Institute of the McGill University Health Center (RI-MUHC), Maelstrom Research is an independent research programme created under the umbrella of the Public Population Project in Genomics and Society (P3G). Maelstrom Research's ultimate goal is to optimize the use of study data and facilitate collaboration amongst networks or consortia of studies. To accomplish this, it will provide the research community with a suite of methods, open-source software, and expert advice needed to support valid data comparison and harmonization across studies. This project brings together tools and expertise developed through the DataSHaPER and OBiBa projects and builds on collaborations established with the Canadian Longitudinal Study on Aging, the Canadian Partnership for Tomorrow, and BioSHaRE projects.
ELSI 2.0 Programme
(led by Jane Kaye)
Launched as a “concept” in Science (11 May 2012: Vol. 336 no. 6082 pp. 673-674), the aim of ELSI 2.0 is to catalyze an international “collaboratory” at the intersection of genomics, ethics, science and policy to make global ELSI research more effective, efficient, and economical. Building on the success of two decades of research on the ethical, legal and social implications of genomics research, the vision of ELSI 2.0 is to broaden the impact of these efforts – to truly globalize and engage a wider range of stakeholders to work together on issues. Overcoming current barriers to international, interdisciplinary research through the development of new, dynamic methods and frameworks will allow researchers to form a global network through which they can interact, while still being able to carry out their work locally.
ELSI 2.0 is now facilitating a range of collaborative activities including joint meetings, proof of principle workshops and pilot projects. More tools are being developed including networking, rapid response, “crowd-sourcing,” modelling, forecasting, and other strategies to better coordinate and leverage international ELSI research. A platform is under development by P3G to enable cross communication and joint work.
ELSI 2.0 consists of several connected components. The Collaboratory is designed as a place for engaging diverse projects and collaborators, many of whom will be new to this type of research. The Accelerator is intended to help overcome the translational impediments of moving from research to implementation by partnering with experts with skills to implement and disseminate policy via the Output Generator. This is why ELSI 2.0 embodies a strong commitment to the shared values of respect, trust and collaboration. ELSI 2.0 initiatives foster both networking and capacity building activities as desired by its members. For 2014-2015, it has four priority areas of development: genomics and infectious diseases; international “ethics safe harbour”; data sharing; and, the concept of “genomic sovereignty”. Other areas will be identified based on interests, needs, and opportunities.