On 13 January at 11 Kärt Pormeister will defend her doctoral thesis “Transparency in Relation to the Data Subject in Genetic Research––an Analysis on the Example of Estonia”.
Professor Irene Kull
Professor Jaak Vilo
Professor Katrin Õunap
Professor Baraba J. Evans
Professor Cecilia Magnusson Sjöberg, Stockholm University
According to the principle of transparency arising from the General Data Protection Regulation of the EU, personal data must be processed in a manner transparent to the individual. As a general rule, the individual must be informed of the fact and purposes of the processing of their data, and the identity of the data controller. Accordingly, individuals must be provided this information prior to giving consent to the
processing of their data. If the processing is undertaken without the consent of the individual (i.e. based on law), the general obligation to provide information applies. In addition, another measure of facilitating transparency of personal data processing is the purpose limitation, according to which personal data may only be processed for purposes for which it was collected. The first two described rules apply as well when personal data is processed for research purposes. However, the purpose limitation does not apply in the research context. Regardless of whether personal data was obtained based on informed consent or law, it can later be used for (different) research purposes. Thus, if personal data is processed for research purposes, transparency in relation to the individual should be facilitated via the provision of information regarding at least the fact and purposes of processing, and the identity of the controller. The aim of this dissertation is to determine, if and how transparency in relation to the individual is facilitated in scenarios where genetic data is being processed for research purposes. In order to do so, the author analyses problems related to the provision of information prior to obtaining consent for genetic research, and the shortcomings of the general obligation to provide information where genetic data is used in research without consent. The author concludes that current regulatory frameworks do not adequately facilitate transparency in relation to individuals in regard to the use of their genetic data if the genetic data is processed for research purposes.