On 18 June 2026 at 14:00 Maret Kruus will defend her doctoral thesis "Balancing the Freedom of Scientific Research and Privacy in Health Data Research: Public Interest, Legal Bases, and Objection and Opt-Out Rights".
Supervisor:
Professor Karin Sein, University of Tartu
Opponent:
Associate Professor Santa Slokenberga, University of Uppsala
Summary
How can health data be used in scientific research while respecting fundamental rights?
Did you know that your health data can be used in scientific research without your permission? Often, the answer is ‘no’, followed by the quick question, ‘But my name and personal identification number aren't included, are they?’ It is true that, in general, the pseudonymised form is used, which does not allow direct identification.
However, even with pseudonymised data, often a risk remains that individuals can still be identified. Therefore, we must be vigilant to ensure that health data is shared only for well-justified purposes. Society has agreed in the General Data Protection Regulation that health data may be used without the data subject's consent only for specific purposes, including scientific research.
But when does an activity constitute scientific research that justifies the use of health data without consent? This dissertation recommends relying on the Frascati Manual and the recommendations of the European authorities, according to which scientific research must be (1) novel, (2) creative, (3) open-ended, (4) systematic, and (5) transferable or reproducible, as well as comply with methodological and ethical standards and contribute to the public interest.
But who decides whether it is scientific research that also contributes to the public interest? The doctoral thesis concludes that although the independent control mechanisms that precede data access, such as ethics reviews or data permit procedures, may be burdensome from the researcher’s perspective, they remain essential to protect fundamental rights.
The thesis also argues that people should normally be able to block the use of their health data in research. However, exceptions must be available. Researchers may use someone’s data even if that person objects, when the research cannot be conducted properly without that person's data and when the value of the research outweighs the individual’s reason for refusing.
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