Title of Presentation
“14 years of Estonian biobank – how to keep the public engaged?”
Date and Place
Liis Leitsalu is a researcher at the Estonian Genome Center of the University of Tartu. Her work at the genome center focuses on behavioral research in genomics and the ethical, legal and societal issues related to the use of genomic information generated by the genome center. She holds a MSc in Genetic Counseling from Sarah Lawrence College (USA) and a BSc with Honours in Genetics from the University of Edinburgh (UK). Currently, she is pursuing her PhD in Gene Technology at the University of Tartu. Liis is a genetic counseling intern at the Tartu University Hospital, a member of the Research Ethics Committee of the University of Tartu, and a member of the BBMRI-ERIC Common Service ELSI.
As per the surveys conducted over the 14 years the public attitude towards the Estonian biobank has been positive for a growing proportion of the population. What might have contributed to this trend, and how to keep the public engaged and maintain the trust among participants? The population-based biobank of the Estonian Genome Center includes biological samples and health information on over 51,000 adults. The three main objectives of the genome center are to promote genetic research, to collect health and genetic information concerning the Estonian population, and to use the results of genetic research to improve public health. The Estonian biobank legislation gives the participants the right to be informed about the data/information collected and generated and also the corresponding right not to know. We will describe how we have addressed the challenges that come with these rights and what are some of the future approaches planned.