The day-to-day work of the Project is facilitated by the small staff of the International Coordinating Office. The International Coordinating Office staff is structured to ensure the core scientific focus of the Project is maintained, whilst retaining the necessary commercial and organisational skills to manage the Project. The structure is built around the primary activities of the Human Variome Project:
- country specific collection;
- gene/disease specific collection;
- knowledge sharing; and
- capacity building programmes.
The Coordination Office embodies three essential components necessary for the Project to work successfully as an inclusive, international initiative:
- Build on the existing community and projects to establish productive approaches to collaboration within the Project
- Coordinate delivery of the Project vision, including supporting, monitoring and reporting on the individual sub-projects embodied within it
- Provide support services that are best delivered by a central organisation with a corporate governance structure
The International Coordinating Office provides the following services:
- managing, coordinating and facilitating communication between the various HVP Working Groups, the Advisory Councils and International Scientific Advisory Committee;
- tracking the progress of the Human Variome Project;
- conducting the elections of the International Scientific Advisory Committee and Advisory Councils;
- disseminating Standards and Guidelines developed by the HVP Working Groups;
- providing administrative support to the Board of Directors, International Scientific Advisory Committee and Advisory Councils;
- managing the Project's Standards Development Process and assisting the HVP Working Groups to achieve their goals;
- educating the field on resources (tools, systems, databases, funding sources) available;
- communicating progress to both the scientific and lay communities
- organising the Human Variome Project biennial meetings and fora series; and
- educating the public on the importance of understanding genetic variation.
Staff
Amy is responsible for the administration and management of Global Variome Ltd, a company providing support services to the international coordination work of the Human Variome Project. Amy is also personal assistant to Professor Sir John Burn, based at the International Centre for Life, Newcastle upon Tyne, UK.
Helen is a consultant to Human Variome Project on matters related to development of innovative health services, growth of human genomics in low and middle income countries, harmonizing efforts between countries for open ethical and sustainable health system responses to developments in human genomics. She has 15 years experience with the UN system including ten years as a senior manager in the World Health Organization she is responsible for liaison with WHO.
Helen is also a Visiting Fellow at Nossal Institute for Global Health, Faculty of Medicine, Dentistry & Health Sciences, The University of Melbourne where her fields of research are politics of the global health agenda, role of multi-lateral and bilateral agencies, investment in disease prevention, strengthening health systems in response to emerging global health policy issues in health and development.
