Doctoral defence: Emmi Kaaya "The Ethics of Informed Consent in Open Science: From Autonomy to Fairness"

On 11 December at 16:00, Emmi Jennina Kaaya will defend her doctoral thesis, "The Ethics of Informed Consent in Open Science: From Autonomy to Fairness", for obtaining the degree of Doctor of Philosophy (in Philosophy).

Supervisors:
Professor Kadri Simm, University of Tartu
Research Fellow Jaana Eigi-Watkin, University of Tartu

Opponents:
Professor Mats Hansson, Uppsala University (Sweden)
Ants Nõmper (PhD)

Summary

In open science, research data are not confined to a single project but can be stored and reused in future studies. This differs from earlier practice, where data were collected solely for one precisely defined project and destroyed after a set period. Openness brings many opportunities, but also challenges – especially when it comes to informed consent.

Traditionally, it has been assumed that participants can make an informed decision; they are provided with a set of key facts about the study, based on which they decide whether to participate. In open science, however, this is not possible, as no one can predict all the ways in which the collected data might be used in the future.

This dissertation asks whether consent can still have moral significance under such conditions. The answer is yes – provided the process of obtaining consent is fair. This means that the researcher does not need to be able to explain every possible future use of the data in order to justify the research. It is sufficient that they explain openly and in a comprehensible manner what participation actually entails in the context of open science. In practice, this means informing participants about how data protection legislation governs the use of materials, and that their ability to control the use of their personal data is very limited.

To examine current practices of informing research participants, this study focuses on biobank research, where personal data and samples are collected and stored for future use. An analysis of biobank consent documents reveals that, although biobank consent forms largely meet legal and ethical requirements, they often give participants an inflated sense of control over the data collected for research.

In conclusion, the dissertation emphasises that consent is not merely a signed document but a moral practice rooted in the relationship between researchers and participants. Consent can legitimise research even in the context of open science, as long as researchers treat participants honestly and make the consequences of participation comprehensible – even if not all future uses can be foreseen.

The defence can be also followed in Zoom.