Overall project description
The projects to improve the effective utilization of personalized medicines are linked to former Government’s key project of strengthening competitiveness. In the General Government Fiscal Plan, the Government decided that a genome centre and a national cancer centre would be established in Finland and that the operations of public biobanks would be enhanced. A total of EUR 17 million will be allocated to costs arising from founding these national clusters of excellence.
The Government decided at its September 2017 budget session to fund the establishment of the neurocentre as part of the implementation of the Health Sector Growth Strategy. The Ministry of Social Affairs and Health and the Ministry of Education and Culture will jointly grant EUR 1.8 million to support the pilot project. The administrative branch of the Ministry of Economic Affairs and Employment will also allocate funds to the project.
The founding of Cluster of Excellence “CoE” (genome centre, cancer centre, neurocentre and drug development centre) and the harmonization of biobank operations will reshape the operating models of the service system, strengthen its role in research, and increase fruitfull cooperation with the business world.
To achieve the objectives of the projects on personalized medicine, measures must be taken in several spheres including legislation, information systems, data resources and healthcare operations. Citizens' trust in healthcare and research plays a key role. Data pools can only be created if citizens allow their samples and data to be used in research, participate in research as patients, and trust the system as a whole.
Compatible, reliable and secure information systems are a basic requirement for extensive utilisation of genomic and health data. Because the data concerned is sensitive personal data, special attention must be paid to data protection, data security and anonymization measures. Additionally, it must be ensured that the statutes regulating the processing of sensitive personal data are in concordance with the statutes regulating the handling of tissues, cells and organs, with the EU's General Data Protection Regulation, and with the Act on secondary use of health and social data.
- Read more about the Secondary use of health and social data
- Read more about the Information Management in Healthcare and Social welfare
New legislation is required to the founding of the centres and the utilization of data. A shared ethical and legislative basis must be established for the use of genomic data. Biobank legislation must be reformed as the act that is currently in force does not recognize the new operating models.