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A Nordic precision medicine goldmine


The combined Nordic population is 27 million – an impressive cohort for health studies.

Last spring, a delegation visited Washington, D.C. to promote Nordic registries and biobanks for precision medicine research. At the Swedish Embassy, the group met with senior officials from agencies such as the U.S. Food and Drug Administration. At an international meeting of the American Association for the Advancement of Science, they held a special session titled “Nordic Registers and Biobanks: A Goldmine for Precision Medicine Research.”

The session went “very well,” with productive discussions, says speaker Maria Nilsson. She is special adviser and leader of the Health and Welfare Programme at NordForsk, an organization under the Nordic Council of Ministers that provides funding for and facilitates Nordic cooperation on research and research infrastructure.

Camilla Stoltenberg, Norwegian Institute of Public Health, and Paul Franks, genetic and molecular epidemiology professor at Lund University also spoke. Also present were former Iceland Prime Minister Sigurður Ingi Jóhannsson and NordForsk Director Arne Flåøyen.


Sigurður Ingi Jóhannsson and Maria Nilsson

Sigurður Ingi Jóhannsson, former Iceland Prime Minister and Maria Nilsson, NordForsk

Advancing precision medicine

The session’s theme was how decades of data and samples collected by Nordic countries can advance precision medicine. The national registries, biobanks and databases of each Nordic country contain vast, curated, longitudinal information on residents’ genetics, environment, and health. Merging the data into a single cohort could identify individual factors of health and disease, leading to more personalized care.

With the Innovations in Personalized Medicine initiative, launched in 2018, NordForsk promotes these resources and Nordic researchers’ expertise in working with them to position the region as a leader in precision medicine research and development.

Efficiency with security

Franks told how the Nordic Precision Medicine Initiative (NPMI) found that Nordic countries are known for genetic studies, but can be even more prominent. For example, more investments in infrastructure could help Nordic countries do most analyses themselves with less outsourcing. NPMI is now in a fundraising phase. Franks says that genome-wide association studies (GWAS) are available for 1.2 million Nordic samples. Analyzing more requires support from Nordic governments, industries, and other funders.

“Nordic countries are known for genetic studies, but can be even more prominent”


Paul Franks

Paul Franks, Lund University

Stoltenberg and Nilsson spoke on benefits and challenges of the Nordic data. Stoltenberg described using the cohort to study effects of 2009 swine flu vaccines. Another example of benefits to all Nordic residents is a project on health and air quality since pollution doesn’t respect borders.

A major challenge to using the Nordic cohort is that researchers must apply to each country individually to use its data. “It can take one to three years to get access,” Nilsson says.

NordForsk and other organizations advocate for policies to facilitate cross-border work.

“We need infrastructure to describe and combine the data at the Nordic level, in a secure way that maintains trust,” Nilsson says. Political interest in this work is high, so she hopes funding will take Nordic research to the next level, “to continue to use the gold in the goldmine.”

Another goal of visiting the U.S. capital city was promoting international collaborations, especially experts bringing new knowledge to the Nordic countries. Nilsson says the trip successfully started conversations about optimal use of Nordic resources.

“Everyone sees the potential,” she says. “We just need to continue our discussions.”