On June 11, the Estonian Biobank, part of the University of Tartu (TÜ), launched its long-awaited online biobank participant portal. With a current Biobank cohort size of more than 200,000 individuals, around 20 percent of Estonia’s adult population can now log in to the globally unique portal and read about their personal health-related genetic risks, drug metabolism, genetic origin and more.
Stored in round barrels of nitrogen on the basement floor of the Estonian Biobank facility are the genotyped DNA samples of around 210,000 Estonians.
Major participant recruitment campaigns took place years ago already, including the Estonian centennial drive for 100,000 new biobank participants in 2018.
Up to this point, not much info had been shared with participants regarding their genes. In June, however, participants in the Estonian Biobank project were finally given access to the first personal information available about their genes with the launch of the online portal MinuGeenivaramu.
Marie Tamm, now a fourth-year med school student at TÜ, was still in high school when she donated her blood in the name of genetics.
“I’d forgotten about it in the meantime, but it occasionally comes up in school too, about how it would be great if we could develop personalized medicine,” Tamm said. “When our professor said that [the portal] would be launched today, it was a surprise for everyone! I immediately logged in, the results were in and it was fascinating to read.”
Logging in, biobank participants can read details about their genetic origin as well as their compatibility with various drugs. Info currently available in the portal also contains other fun facts, such as how quickly your body metabolizes caffeine and what percentage of your DNA is of Neanderthal origin.
“The most exciting for me was ethnic background,” Tamm acknowledged. “I’ve spent a lot of time thinking about where I come from and who my relatives are, so that was really interesting to see.”
Currently, the biobank participant portal only lists genetic predisposition to two diseases – Type 2 diabetes and coronary heart disease, or coronary artery disease. Further information is limited for now in order to avoid stirring up health anxiety and overburdening family doctors.
“In the future, we should consider what kind of information would be reasonable to add in there, what doctors would like to see there,” said Estonian Biobank director Lili Milani. “And in the long term, of course, we’re working on how these results could reach doctors.”
According to Milani, the main goal of the newly launched biobank participant portal is to educate people. To that end, it also provides info on how to reduce one’s genetic risks with lifestyle changes.
“Participants will see that as much data as we have about them will be pre-entered, but they can also update it,” she noted.
“When they see the visualization of their risk, they can explore what would happen if they quit smoking, lose 10 kilograms – see how their ten-year risk level drops as a result,” the biobank director explained.
Currently only available in Estonian, those who participated in the Estonian Biobank project can log in to the MinuGeenivaramu portal using ID card, Mobile-ID or Smart-ID authentication.
More information: https://genomics.ut.ee/en/content/estonian-biobank-launched-portal-more-210000-biobank-participants
VES/ERR News
