FinnGen seeks health data on Finland’s entire population

Finnish gene research project FinnGen is planning to add health data covering the country’s entire population to its study, Yle’s MOT reports. The data would concern the sensitive health information of 7.1 million people.

Internal material obtained by MOT and presented to FinnGen’s partners shows that the project wants the data to be made available to researchers in FinnGen’s secure Sandbox environment.

FinnGen has collected genetic and health data from more than half a million Finns since the research project began nearly 10 years ago. Its partners include several international pharmaceutical companies.

The project aims to improve understanding of how diseases develop, how they can be prevented and how treatments can be developed. Its current research permit expires next year, and preparations for a new phase are under way.

Hundreds opposed the use of their data

The planned data comes from a dataset called FinRegistry, which combines an exceptionally broad range of sensitive health information on Finns. MOT reported on the dataset in 2024, when public law professor Tomi Voutilainen warned of risks associated with it.

After that report, several hundred Finns said they opposed the use of their health data.

FinnGen director Aarno Palotie does not see a risk in adding FinRegistry data to the research project. He said the same registry information already exists for people who have taken part in the gene study, and that data on the rest of the population is needed to provide a general comparison.

“FinnGen participants are largely people who already have illnesses, which means they differ from the general population. Health registry data covering the entire population would help us compare FinnGen participants with the general picture,” Palotie said.

Palotie said the situation should not be described as combining datasets. However, according to the internal material obtained by MOT, the goal is to bring data on the entire population into FinnGen’s secure Sandbox environment for use by researchers.

FinnGen currently includes Finnish universities, wellbeing services counties, biobanks and 15 international pharmaceutical companies. About 1,200 users currently have access to its Sandbox environment.

Data includes information on deceased people

FinRegistry contains information on more than 7.1 million Finns, including some who have died.

The dataset includes information on infectious diseases, congenital malformations, receipt of social assistance, hospital stays, diagnoses, intensive care, marriages, family relationships and laboratory results. It does not contain people’s names or addresses.

The data was collected without seeking separate permission from citizens. Its use is possible under Finland’s Secondary Use Act.

In February, the Helsinki Administrative Court ruled that an individual does not have the right to have their data removed from FinRegistry. People can, however, prohibit the use of their data, in which case it will not be disclosed for further research.

Requests to oppose the disclosure of data can be made, for example, through the website of Findata, which maintains the FinRegistry dataset.

People may also have been included in FinnGen’s gene study without knowing it. MOT reported in 2019 that FinnGen includes old biobank samples whose transfer to biobanks had never been approved by the people who provided them.

Voutilainen said the planned addition of FinRegistry data to the gene research project raises several risks. These concern who will process the data, how it will be protected, how long it will be processed and what kinds of research it will be used for.

“A central problem is also that the data subject, the citizen, knows practically nothing about how their own data is processed,” Voutilainen said.