- FinnGen brings together data on the genome and health of 500,000 Finns in a groundbreaking way.
- The goal is to achieve breakthroughs in the prevention, diagnosis and treatment of major public health problems.
- The project is funded by 13 international pharmaceutical companies and involves 15 academic partners.
The FinnGen project headed by the University of Helsinki has quickly become one of the most interesting initiatives in gene research. According to Aarno Palotie, Scientific Director of FinnGen, there are only five or so projects of the same size in the world. In fact, Finland now has a rare opportunity to utilise new research infrastructures to increase its attractiveness to businesses.
“Our international profile is currently exceptionally high” Palotie notes.
In the project, launched in 2017, the University has joined forces with global pharmaceutical companies and Finnish universities, research institutes and biobanks. The idea is to accumulate knowledge about the role of genes in diseases, thus boosting drug development – something possible only through major effort.
“Very large sample datasets are needed for this”, Palotie says.
FinnGen has combined data on the genome of 500,000 Finns and their medical histories, resulting in a unique databank that the scholarly community can put to use. It has already enabled researchers to identify more than 1,000 gene variants that increase the risk of developing certain diseases or that protect against diseases.
The project is coordinated by the Helsinki Institute of Life Science HiLIFE at the University of Helsinki. FinnGen began life when colleagues of Palotie and other researchers were working in the genetics units of pharmaceutical companies. This created a network for active dialogue and an idea for a joint project.
“Of course, it wasn’t exactly easy to convince American companies to invest in a remote location on the Eastern periphery of Europe,” Palotie reminisces.
However, there were three reasons why Finland was a suitable location for the accumulation of genetic data. First, the isolated population has accrued rare gene variants, making it easier to investigate pathogenic mechanisms. Another asset was the health registries typical of the Nordic countries, which collect data on people’s diseases throughout their lives. Finally, Finland has a strong tradition of epidemiologic research. This has led to the Biobank Act, which enables extensive utilisation of health data.
Previously, research in the field has been pioneered by UK Biobankand the Icelandic deCODE genetics. Similar projects are ongoing in, for example, the United States and Singapore. From the perspective of drug development, no single project is a turning point. Instead, what is key is the growth of knowledge globally.
“You need to get an international wave of studies going,” Palotie says.
FinnGen can help to introduce new therapies to patients, for example, for cardiovascular diseases and autoimmune diseases. It also enhances prioritisation in drug development: if the genetic data were to show a high risk of adverse effects associated with a particular therapy, it would not be sensible to continue advancing the therapy.
“This has become a reliable data resource for businesses.”
In addition, FinnGen is increasing understanding of gene variants specific to Finns, which cannot be investigated in other countries. Some of the citizens participating in the project have also been involved in further studies, through which they have gained important information about their health, such as of an increase in the risk of developing breast cancer.
FinnGen recently received €52 million in additional funding until 2027, which the researchers intend to spend on determining the role of genes in disease progression. For the time being, knowledge on the topic remains scarce.
“We don’t know which types of biological factors affect the rapid worsening of diseases.”
According to Palotie, FinnGen has already increased interest in Finland. Contacts from abroad come on a daily basis, and in recent years more international junior researchers have found their way to HiLIFE.
“The trend is positive. Now we have to make sure it doesn’t fizzle out.”
The next step is to combine the datasets of FinnGen and similar projects globally. New infrastructures must also be maintained to keep Finland an attractive investment target for businesses. According to Palotie, clinical follow-up studies could be conducted in Finland to which participants would be invited on the basis of genetic criteria, as long as the required machinery is well oiled.
“This is something for which we should have exceptionally good chances.”
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