Establishment of a genome centre proceeds – the working group's memorandum sent for comments
The establishment of a genome centre in Finland is proceeding. The working group appointed to prepare the establishment of a genome centre has sent for comments a memorandum that outlines its main proposals for a genome act and for setting up the centre. It is hoped that comments will be received, in particular, from healthcare and social service professionals, research communities, biobanks, enterprises and organisations by 2 February 2018.
The working group proposes that the genome centre be built on existing know-how, expertise, materials and structures. Its task as an authority would be to create, maintain, and administer a national reference database of genomes. Genomic data would be processed and stored in an environment of data security. Genomic data would be stored in the genome database in accordance with the principles of the General Data Protection Regulation of the EU, when data could only be used for different purposes by virtue of the lawful bases of processing defined in the Regulation.
The genome centre would promote the use of genetic information in healthcare, research and innovation activities in the health sector. Its task would also be to improve the potential of individuals to utilise knowledge of genetics, mobilise citizens’ dialogue and monitor citizens’ opinion of genomic knowledge.
The genomic database would consist of several partial databases, in which the data producers would store the genomic data they produce. The genome centre would become a new registrar, but the data producers would continue to be the administrators of the genomic data they produce. They would be responsible for the description and handover of data to the genome centre. Individuals could also store genomic data they themselves have ordered in the database, and they could set conditions for processing the data. The genome centre could process the data in the genome database in order to promote health and wellbeing and to prevent and treat illnesses.
The genome centre would also have the task of providing guidelines and evaluation based on special expertise. It would create procedures for situations where genomic data produced for different purposes are applied to healthcare. Guidelines are needed, for example, on how researchers and biobanks transmit data to healthcare if research reveals issues that require healthcare personnel’s reaction.
Processing of genomic data stored in the genome centre would not be allowed for purposes of law enforcement, criminal investigation, insurance, forensic medicine or purely for the determination of parenthood or kinship.
A law would be enacted on the establishment of the genome centre, the national reference genome database and the processing of genomic data. The intention is to submit the bill to Parliament in 2018. Legislative preparation and the specification of proposals will be continued in the spring on the basis of comments. The intention is to prepare the Government’s proposal and circulate it for comments in the spring of 2018.
Inquiries
Senior Specialist Jaakko Yrjö-Koskinen, tel. +358 2951 63584, [email protected]
Planning Officer Petra Ruuska, tel. +358 2951 63587, [email protected]
Senior Specialist Sandra Liede, tel. +358 2951 63633. (from 2 January 2018) [email protected]