Finland has a new natural resource: the Biobank
All countries have rocks, but few have any worth mining. So it is in the world of medicine - all countries have data, but few have any worth mining for research.
“Finland is a small country but the size of the population isn’t critical for genomic research. Perhaps counter-intuitively, it can help to be small,” says Olli Carpén, Professor and Research Director at the University of Helsinki, Helsinki Biobank and University of Turku. “A population of five million represents a vast gene pool and it helps that the Finns have been relatively isolated for generations. A more homogenous genome allows researchers to better use high-throughput genotyping and statistical tools which can dramatically lower time and costs in research,” Carpén continues.
Already, the Finnish genome is one of the best studied in the world and has proven to have a relatively high incidence of gene variants implicated in today’s chronic and costly conditions, such as cardiovascular diseases and diabetes.
In a homogenous population, like Finland’s, it is also easier to identify the all-important outliers. Outliers, those individuals who have better disease outcomes than expected, are the gold nuggets of genetic research. “An outlier’s genome can harbor protective alleles and identifying these can open up entirely new drug discovery pathways,” explains Carpén.
Citizens’ trust allowed for enacting progressive biobank legislation in Finland
A quality healthcare delivery system is a prerequisite for population-based genomic research in any country, but what is really crucial is universal, equitable access for the whole population. Outside the Nordics, few countries meet this criterion. “Inequality of access will always introduce bias, which will skew the results of any research,” says Carpén.
What further differentiates Finland is the way its society has evolved. Few countries have successfully balanced freedom and control for the benefit of their citizens. In Finland each resident has a unique social security identifier, and the population register goes back hundreds of years. A long history of participatory democracy has resulted in a high level of transparency in society and institutions trusted by its citizens. This trust has allowed the Finnish parliament to enact the most progressive biobank legislation in the world.
Finland is integrating biobanking into its universal healthcare system
In the past, researchers have taken a project-based approach to patient sample collection and research. “The project approach has had a self-limiting effect on progress in the field,” says Carpén. He continues: “Finland’s population-based biobanks will enable new study paradigms, ones where new research can seamlessly build on earlier research.”
The Helsinki University Hospital and other hospital around Finland are integrating biobanking into everyday healthcare. Each time a citizen comes into contact with the hospital and a blood or tissue sample is taken, he or she is asked to consent to biobank research. This way, Finland’s biobanks covers all segments of the Finnish population. “Samples need to be taken to accredited standards but the additional costs are really negligible. With half a million patient encounters a year in Helsinki, our biobank will build rapidly,” says Carpén.
Seeing biobank participation as the right to be a research patient
The long-term future of any biobanking system will ultimately come down to universal willingness of the population to participate,” Carpén says thoughtfully. “In Finland, we can thank our biobank legislation because at the same time as protecting patient identity it allows for patients to be notified when they might benefit from research into their disease. Furthermore, all new information from any research must be returned to the biobank and patients will be informed when their data has led to progress. This way our legislation has made the patient a beneficiary as well as a participant in biobank research. Early experience is showing that that 98 % of our patients agree to participate in our biobank project. In our society, we believe our citizens will not see the biobank participation as an obligation, rather as a right to become a research patient,” Carpén summarizes.