Statement on the draft Government proposal to Parliament on the law concerning the Genome Center and on the conditions for conducting health-related genetic analysis
CSC is a major contributor to European infrastructure and research projects, such as the ELIXIR infrastructure for medical and bioinformatics tools and In the EU’s 1+ Million Genomes (1 + MG) cooperation initiative as well as in the Beyond 1 Million Genomes (B1MG) project.
Genome research is a rapidly evolving and advancing science. Genome data has been identified as one of the enablers of success in the growth strategy for health research and innovation (in Finnish). The establishment of the Genome Center is also part of Prime Minister Marin’s government program. The Genome Act has been in preparation for years, so it is important that progress is made in line with national targets. We believe that the division of the law into two parts is justified and worthwhile, as it will ensure that the establishment of the Genome Center progresses and that it can start operating. Failure to set up a Genome Center in the near future will have negative effects on the large-scale use of genomic information as part of national health care.
The law now in question is therefore important because it allows for the establishment of a Genome Center and determines when genetic analysis can be performed in healthcare for the benefit of the patient. This law does not yet regulate how Finnish genomic data is collected, how it should be managed or how the collected data is used as part of health care and secondary use. However, this law will allow the Genome Center to become operational and its expertise can be widely used in the further preparation of legislation that further defines the collection, processing and use of genetic material mentioned above.
Read the statement (pdf) (in Finnish)