Data protection

FinnGen study will manage health registry and genomic data without compromising the privacy and integrity of participants. The members of the research project only handle data that has been coded with a FinnGen ID (pseudonymized).

Detailed information on the processing of personal data in the study can be found from our data protection statement webpage (accessible version) or by downloading the data protection statement as a PDF file. Below you will find more information about the sample and data flow during the study.


Sample and data flow

1) A sample (most often a blood sample) containing a personal ID, will be stored in the biobank together with the personal ID of the donor of the sample.

2) The biobank will send the personal ID to the coordinating biobank, which will request health register information related to the personal ID from various registers on behalf of the University of Helsinki.

3) The coordinating biobank will give each research subject a research ID (pseudonymisation). The ID will be submitted to the biobank managing the sample, which will then use it as a sample code. The coordinating biobank will link the register ID with the register data of the research subject.

4) The biobank or a Finnish subcontractor will process the blood sample into DNA. The biobank will send a small coded part of the DNA sample to the sample logistics laboratory.

5) The sample logistics laboratory will prepare the samples and send the coded samples for genotype analysis to be made by a service provider outside Finland. The service provider must not give the samples or data derived from it to a third party.

6) The generated genome data will be shipped encrypted to the University of Helsinki and kept there as long as the analyses require. The genotype data will be returned to the possession of the biobanks after one year. No copy of the genome data will remain in the possession of the service provider which carried out the genotyping.

7) Data derived from national health registers will be combined with the genome data with help of a sample code. When produced in this way, the FinnGen research material will only contain coded data.

8) Only the members of the analysis group separately nominated by the project who have signed an appropriate non-disclosure agreement will have access to the research material.