CSC’s statement on the draft government proposal for the Genome Center and conditions for the processing of genome data - CSC’s statement on the draft government proposal for the Genome Center and conditions for the processing of genome data
CSC sees the creation of legislation aimed at establishing the Genome Center and defining the conditions for the processing of genome data as a very important step, especially from the perspective of developing the health research. However, the proposal still requires comprehensive processing, as it is currently heavily focused on the use of genomic data in health care, and the linkage to the secondary use remains weak. The proposal contains risks for the success of research and hence for the development of health care.
The technical requirements of secondary use are significantly different from the requirements for health care use. In the further development of the law, it should be noted that genome data created in health care must be made available for research purposes in order to achieve scientific breakthroughs.
In addition, CSC sees advisable that the genome data management is handled by the state sector data management services until the key actors have more knowledge on utilizing the genome information. However, the law should not radically restrict the processing of anonymous genome data as it forms the basis for research that is crucial for the health care development.
Read the full statement in Finnish (pdf)