Governance & Leadership

Governance relates to leadership, oversight and coordination of the implementation of genomic medicine.

Issues

Within the Catalogue of Global Genomic Medicine Implementation Initiatives, less than a third of the initiatives (17/61)* gave some acknowledgement to governance and leadership. However, it is likely that consideration is given to this theme even if it is not mentioned.

Health services are often complex and fragmented, and the implementation of genomic medicine can require new approaches and changes to the way health services are delivered. In addition, there are usually many players which have a role including public and private health services providers, government, industry, patients, professional bodies and researchers, to name a few. For these reasons, high-level strategic leadership and coordination is needed to facilitate the changes and investment required. 

Most often the main activity in this area relates to establishing governance entities that can coordinate implementation initiatives and facilitate collaboration. The types of entities take many forms including steering groups, boards and intergovernmental committees but the role is generally one of being responsible for defining and delivering the vision for the genomic service including identifying the policy issues that need to be addressed and bringing together the relevant stakeholders to design and implement the service.

Some of the actions to be undertaken by the governance entities established include:

  • promoting collaboration across stakeholders including coordination across national and regional levels

  • developing implementation plans/roadmaps/government white papers and monitoring implementation

  • mobilising resources

  • establishing shared and effective policies, processes, techniques and technologies

  • assessing the impact of genomic medicine including defining success measures (health and economic)

  • overseeing establishment of national genome centres and related procedures

  • education of the general public

* INITIATIVES FROM THE CATALOGUE THAT ACKNOWLEDGE GOVERNANCE AND LEADERSHIP THEMES

Australia (4) - National Health Genomics Policy Framework, NSW Health Genomics Strategy, Genetic and genomic healthcare for Victoria 2021, Australian Genomics Health Futures Mission

Belgium (1) - Genomics and public health in Belgium

Canada (2) - Genome BC - Strategy for Genomics in the Health Sector in British Columbia, Genome Canada National Initiative for the Clinical Implementation of Precision Health

Denmark (1)– National Strategy for Personalised Medicine 2017 - 2020

Finland (1) - Improving Health through the use of Genomic Data

France (1) - French Plan for Genomic Medicine 2025 

Italy (1) - National Plan for Public Health Genomics

Japan (1) - Implementation of Genomic Medicine Project

Mexico (1) - Promotional Consortium of the National Institute of Genomic Medicine (INMEGEN)

Qatar (1) - Qatar Genome Programme (QGP)

South Korea (1) - Genomic Medicine in Korea: Plan and Infrastructure-Genome Technology to Business Translation Program

United Kingdom (2) - Building on our inheritance - Genomic technology in healthcare, Generation Genome- Annual Report of the Chief Medical Officer 2016

 

The development of these resources was supported by the Global Genomic Medicine Initiative (G2MC) and the Australian Genomics Health Alliance (Australian Genomics)