Estonian Biobank to provide personalised feedback to biobank participants

About Estonian Biobank

Estonian Biobank (EGCUT) is a population-based longitudinal biobank established in 2000 and representing about 5% of Estonia’s adult population (i.e. a total of 52,000 participants). The whole cohort of the EGCUT is now fully genotyped and 2,500 individuals have been whole-genome sequenced. According to Estonian legislation, i.e. the Estonian Human Genes Research Act (HGRA), and the broad informed consent signed by all participants, the Estonian Biobank is authorised to access the e-Health system, national registries and hospital databases in order to continuously update the health information of all participants upon recruitment.

Providing personalised feedback to participants

The research data generated at the biobank enable us to use individual genomic variation obtained from genetic analysis and computational methods to predict disease risk, detect high-impact, medically actionable findings etc. Through the return of individual risk information, we aim to inform treatment, optimise drug prescription, and potentially postpone disease onset. Returning individual genomic results to biobank participants started in 2016, using previous projects that involved returning research findings to biobank participants as a model. Familial hypercholesterolemia was used as a model during this first stage.

Within the new pilot programme, feedback will be given to participants who express an interest and fulfil the legal requirements stipulated by the Human Genes Research Act. Once the pilot phase has been concluded, the plan is to embed the report in the medical system in the coming years.

Click here for more detailed information on the programme: BBMRI-ERIC Estonian Biobank News Sep 2017