Estonia to Integrate Genetic Data into National Health Information System

TALLINN - The Estonian government approved a regulation on Thursday to integrate genetic datasets into the national health information system. This is a crucial step toward utilizing genetic data in healthcare under a new law.

"Estonia is in a unique position globally: we have a large biobank and, simultaneously, a functional and secure health information system. A clear legal framework is also now in place, as the president recently promulgated the Human Genes Research Act. This gives us the opportunity to put genetic data to practical use for the benefit of public health," said Minister of Social Affairs Karmen Joller.

The regulation establishes the rules for transferring data from the biobank to the health information system. The transferred data will be processed in a secure, isolated environment within the system, and raw data will not be released.

Data will be transferred securely and only after an individual has submitted a declaration of consent through the national Health Portal. This option will become available to individuals who are part of the target group for a service provided by the Estonian Health Insurance Fund, and they will be notified separately.

The first service utilizing genetic data will focus on breast cancer. A feasibility study, with its final report due in April 2026, will provide the basis for the Estonian Health Insurance Fund to launch a nationwide breast cancer screening program based on polygenic risk scores within the same year.

This personalized approach, which accounts for individual genetic risks, will allow for the inclusion of women as young as 40, who would typically not be invited for screening for another 10 years. Earlier health monitoring for women with a significantly higher-than-average risk helps detect cancer at the earliest possible stage. It is estimated that this could prevent 15 deaths for every 10,000 women included in the program.

In the future, other services will be added, such as pharmacogenetics, which will help doctors select the most suitable medication and dosage for each patient.

The regulation also lays the groundwork for personalized notifications, such as sending reminders for screening appointments.

"The contribution of gene donors to the advancement of Estonian science has been invaluable, and now there is an opportunity for the new knowledge generated by researchers to support smarter disease prevention and treatment. The updated legal framework and new technical solutions will enable the implementation of innovative services and lead to cost savings by utilizing existing genetic data. This is an internationally unique achievement," said Lili Milani, Director of the Estonian Biobank.

More than 210,000 people have joined the Estonian Biobank as gene donors. The national Health Portal is one of Estonia's most frequently used e-services, with an average of 1.45 million visits per month. The Human Genes Research Act and its related implementing regulations will come into effect on April 1, 2026.