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Estonia · Law · SE

749

Human Genetic Research Act

avaldatud riigiteatajasEstonia· Riigikogu· ET

Introduced

3 November 2025

Last action

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Status

AVALDATUD_RIIGITEATAJAS

Sponsors

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Subjects

Discovery layer

Source updated

25 February 2026

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Summary

The purpose of the new draft law on human genetic research is to make the organization of the gene bank and genetic research clearer, more up-to-date and more transparent. The bill specifies what data is entered into the gene pool, who transmits it, and how the gene donor can change his wishes. A legal basis will be created so that the health data of the gene donor can be supplemented from the state information systems and, at his request, the genetic data can be transferred to the personal medicine of the health information system for the provision of services. The draft will help strengthen people's trust and control over their genetic data, create a secure and efficient data processing framework, and put genetic science into practice. Estonia is taking a step forward in the direction of human-centered, science-based and safe healthcare, combining science, ethics and technology to offer people the opportunity to live longer, healthier and more informed. In scientific research, the processors of genetic data are established more unified rules and ethics approvals will be coordinated by one central ethics committee, which will make the process faster and clearer. The data are provided to researchers in pseudonymized form in a secure processing environment, and their use is subject to a fee to cover the costs of data preparation and processing. The bill prohibits discrimination against people based on their DNA, genetic characteristics or hereditary risks, allowing such in case of discrimination, contact the equality commissioner. The changes will reduce bureaucracy and administrative burden, simplify the conduct of scientific research and increase the reusability and reliability of data.

Machine translation from Estonian. The official text remains authoritative.

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Documents

41 official files

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