Unlocking personalized medicine with genetic data

Twenty percent of Estonia’s population has genetic data stored in the Estonian biobank. Yet, until recently, the potential of this data was largely untapped.

Previously, genetic data was not easily accessible to Estonian companies for research and development. Additionally, even with donor consent, doctors could not directly request genetic data from the biobank for use in a patient’s personalized treatment plan. Although individuals could request their own data from the gene bank and share it with their doctor, this process added unnecessary bureaucracy.

In collaboration with Antegenes, Accelerate Estonia explored the legal and bureaucratic obstacles to using genetic data in personalized medicine and how overcoming these barriers could open new doors for the future of healthcare. 

In 2025, the Ministry of Social Affairs, in collaboration with Accelerate Estonia, implemented an amendment to the Human Genes Research Act. This change allows companies to access Estonian biobank data under specific conditions for two purposes:

• Access to anonymized data for product development: companies can access data in an anonymous format to validate hypotheses for healthcare products – for example, identifying specific cancer markers in DNA.
• Direct access to biobank data with patient consent: previously, patients had to act as intermediaries between the biobank and their healthcare provider, or the provider had to conduct their own genetic tests to deliver services. Now, with the patient’s consent, a service provider can retrieve data directly from the biobank.

The new act entered into force at the beginning of 2026. To validate the efficiency of these legislative changes, Accelerate Estonia is cooperating with private partners to conduct initial data queries from the biobank, ensuring the new processes are fully operational.