Utilisation of genetic data and description of the register data to be combined

For the purpose of the study, the data on the genome will be summarised as a risk score describing the hereditary risk of a particular disease or other health-related factor. Although each person’s genome is unique, individuals cannot be identified based on their risk score. The risk scores are combined with data from the population register. We have access to Statistics Finland’s population registers, which collect information on the socio-economic factors, income, family relationships and living conditions of the research subjects and their families. In addition, the research data includes register data from THL and Kela, which contain information on morbidity and the use of services and benefits at different stages of the research subjects’ life cycle.

The combined data available to researchers is pseudonymised. Pseudonymisation means the processing of personal data in such a manner that the personal data can no longer be attributed to a specific person without the use of additional information. Such additional information must be kept carefully separate from personal data.

A detailed description of the combined register data can be found in the privacy notice of the research. More information on utilisation of the genetic data can be found in the public notice by The Finnish Institute for Health and Welfare.

Below is a graphic model of the compilation and processing of the research data. The data is pseudonymised, and the research team will have access to it only through a highly protected Fiona environment.