helsinki – Finland’s bet on public health involves genetic research. Research fueled by population health data, with samples stored at temperatures ranging from -20 to -150°C in biobanks. The country now has 11 such establishments.
These biobanks now house the genotypes of 10% of the country’s population, or 500,000 people. Thanks to big data and data analysis, the objective is to move towards personalized medical research.
“Geographical isolation gives Finland an advantage for genetic research,” says Päivi Sillanaukee, Finland’s Ambassador for Health and Wellbeing. Finland has a historically isolated and homogeneous population. This provides a rather unique opportunity to target the genomic variations responsible for diseases.
Finnish biobanks cover the whole country.
“Research on big data and the datafication of health”
“The objective is to understand the mechanisms of diseases using genetic strategies”, explains Mari Kaunisto, geneticist. Research has already been conducted on diseases such as cancer, diabetes, heart problems and glaucoma.
But at the heart of the system, in addition to the technical expertise, is the bond of trust between the donors and the authorities.
“Biobanks sit at the intersection of two trends: big data research and health datafication,” notes a recent study, which points out that “the datafication of medicine and health raises questions about the potentially misuse of big data, due to the highly sensitive nature of medical and genetic data”.
Not knowing what their data will be used for
“Finns have a positive attitude towards medical research. Finland is a society based on trust,” said Päivi Sillanaukee. A sentiment based on numbers. For the fifth year in a row, Finland is at the top of the “World Happiness Report”, which lists the degree of happiness of the inhabitants of different countries in the world. And the authors of the survey explain Finnish happiness, among other things, by the degree of confidence felt by the population.
“When it comes to values, Finnish happiness and Nordic happiness are both linked to notions of trust and freedom. In Finland, citizens tend to trust each other, as well as their civil servants and their government”, also indicates an institutional site.
The trust that donors place in biobanks goes even further than what the GDPR (General Data Protection Regulation) imposes on the collection and storage of data. Because the difference between traditional sample collections and the concept of a biobank is “that samples collected in a biobank can be used for a variety of future research needs, and not just for a specific defined research objective”, mentions a institutional site devoted to the subject.
International competition on biobanks
“The GDPR was first perceived to conflict with the very idea of biobanks as repositories of personal data that will have multiple and unforeseen uses in the future,” says the same study. “During the negotiation of the settlement, biobanks were among the most vocal supporters, demanding exceptions for researchers. The exception was finally incorporated: data used for research purposes has a special status codified in Article 89 of the GDPR. »
An exception which was reflected in local law by a revision in 2019 of an initial text from 2012. The two pieces of legislation of course give citizens opportunities to obtain information on ongoing research projects that their samples. Sample donors may also prohibit the use of their samples at any time during the research project. The law therefore guarantees the donors’ sovereignty over their information and the protection of privacy.
In practice, to consult data stored in Finnish biobanks, an online data access platform named Fingenious was created in 2019. Biobanks provide anonymized data to public and private research centers. Once the genetic work is done, the data is returned to the biobanks, and re-identified.
With this original model, Finland competes with countries with much larger populations, which have also embarked on biobanks. The United Kingdom, for example, manages a biobank also containing half a million samples. And China plans to collect samples from five to ten million individuals over the next ten years. The American All of Us program aims to collect medical and health data from more than a million volunteers. However, the largest biobank is located in Graz, Austria. It stores more than 20 million biomedical samples.
Towards monetization of personal data
Above all, Finland is now moving very proactively towards the monetization of its genetic heritage stored in its biobanks.
“For us to prosper as a nation, we need business,” said Kari Klossner, Smart Life program manager for Business Finland, an organization responsible for promoting the country’s businesses. “Using data for business activities, when you do it the right way, with the right rules and regulations, is a good thing. This allows us to create new products that we can sell internationally. We can generate exports and through exports we pay for imports. »
A new discourse, with regard to the way biobanks have been enriched for 10 years by donations from citizens, persuaded to participate in national public health policies.
But this orientation does not worry Kari Klossner, who mixes both confidence and obedience in his explanation of the weak criticism in Finland of this turn. “In many cultures, such as that of North America, there is a great distrust of government. The Finns are quite the opposite. We trust the government and that’s why the way we use health data in research is so successful. »