The field of genomics is developing quickly and there are many policy frameworks and demonstration projects underway around the world. For a number of years there have been suggestions that a systematic mapping of ongoing implementation projects and an inventory of available evidence, and evidence-generation projects, would assist in policy development and regulation.
Catalogue of Global Initiatives
To address this need, a catalogue of national and regional-level genomics strategies and policies has been created and made available on a new a website developed by Australian Genomics and the Global Genomic Medicine Collaborative (G2MC).
In the catalogue, genomics initiatives are categorised by ‘policy frameworks’, ‘demonstration projects’, ‘complete integration and road maps’, or ‘population studies’. For each entry there is information on the location of the initiative, date of commencement, and policy issues being considered.
For the genomic demonstration projects and population studies, the catalogue details the study cohort size, genomic testing approaches and disease areas of focus. Information about the initiatives in the catalogue has been obtained from publicly available sources and visitors to the website are encouraged to contribute further information to the catalogue.
Policy topics in Genomics
A second component of the website is currently under development. The ‘Policy Topics’ area delves into a range of policy themes identified from the catalogue of global initiatives, providing summaries and analysis of:
- Ethical, legal and social implications
- Data and information management
- Evaluation, reimbursement & evidence
- Workforce skilling
- Governance and leadership
- Public awareness and education
- Scientific understanding & technical capabilities
- Clinical and laboratory pathways
While work on this area continues, information on some specific topics is available, including general information on genetic discrimination issues and links to evidence-generating tools such as those created by projects support by the NIH National Human Genome Research Institute. We encourage visitors to regularly come back to these policy topics as more content is added.