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World of Genomics: Norway

Originally written by Anjum Aktar, November 2022. Updated by Charlotte Taylor, January 2024.

Our next stop in the World of Genomics tour is Norway. From its famous fjords and magnificent mountains to the breath-taking northern lights, Norway is a picture-perfect country. It’s no surprise that Marvel’s Thor chose Norway as the new Asgardian home. As well as being home to the biggest herd of wild reindeer and a place where a penguin is promoted to high ranks in the military, the Scandinavian country boasts reputable wealth and health. Here’s your chance to see how this translates to an impressive genomic landscape.

The population of Norway

Norway (or Norge in Norwegian) is a narrow country in the Scandinavian Peninsula, with around 50,000 islands along the heavily indented, glacial-carved coastline. The Kingdom of Norway is surrounded by seas on all sides but the East, where it borders Sweden, Finland and Russia.

Figure 1: Map of Norway (Source: Canva)  

85% of the country is ethnically Nordic. But, Norway’s capital city, Oslo, is its most diverse city, with 30% of the population being 1st or 2nd generation immigrants. Pakistanis make up the largest ethnic minority group, followed by immigrants from Sweden, Somalia and Poland. Northern Norway is home to the indigenous Sámi people who migrated almost 10,000 years ago from Central Asia. They have a distinct culture and native language.

The earliest Norwegians were hunters and fishermen. But, as new settlers arrived, they were replaced by farmers. During the Iron Age, Norwegians became more acquainted with the sea. This gave way to the famous Viking Age in the 8th century. Norwegian Vikings sailed to the West, establishing settlements and becoming excellent ship builders. After the Viking Age, the Black Death in the 14th century killed two-thirds of the Norwegian population – a number which would not be regained for another three centuries.

In response to economic threats from central Europe in the 14th century, Denmark, Sweden and Norway formed the Kalmar Union. This lasted from 1397 to 1523, when Sweden left. After much geoeconomic and geopolitical conflict with Sweden and Denmark, Norway finally gained full independence in 1905.

During the First World War, Norway tried to maintain its neutrality but the British government used diplomatic pressure to use the country’s shipping industry.  Norway was invaded by German troops during the Second World War. About 10,000 Norwegians lost their lives during this time and many people were displaced. This includes around 773 Jews (out of a population of 2,100) who were deported to Germany. Around 50,000 Norwegians also fled to Sweden.

Today, the country is one of the wealthiest on Earth and, although Norway is not in the EU, ties with its European neighbours are close.

Geographic and demographic information

Summary statistics

  • Land area: 385,207 km²
  • Gross domestic product (GDP)
    • Total: $579.3 billion (2022)
    • Per capita: $106,148.8 (2022)

Population statistics

  • Population size: 5,457,127 (2022)
  • Birth rate: 10 per 1000 people (2021)
  • Death rate: 8 per 1000 people (2021)
  • Infant mortality rate: 2 per 1000 live births (2021)
  • Life expectancy: 83 (2021)
    • Male 2021 estimate: 82 years
    • Female 2021 estimate: 85 years
  • Ethnicities: The ethnic composition of Norway is mainly Norwegian (83.2%). This includes around 60,000 indigenous Sámi people. The rest is comprised of other European (8.3%) and non-European (8.5%) minorities who mainly immigrated from Africa and the Middle East.

Healthcare system

Scandinavian healthcare systems are renowned for their excellence – so it is no surprise that Norwegians live healthier and longer lives than most Europeans. The healthcare system is semi-decentralised. The Ministry of Health and Care Services oversee the four Regional Health Authorities (RHA) which are responsible for specialist care in all public hospitals.

Local government are responsible for primary care, social services, and long-term care.

The Norwegian healthcare system is one of the most expensive in Europe. The country’s health expenditure per capita is $9,020 (2021), the fourth highest in the world after the US, Switzerland and Germany. Public funding, in the form of general taxation and the National Insurance scheme, account for 76% and 10%, respectively, of current expenditure. In contrast, private expenditure accounts for 15% and is mainly spent on dental care. As most residents are covered under the public healthcare scheme, private healthcare is not common and is usually offered as a work incentive by employers.

Treatment is not free. This means that residents, with the exception of children under 16 and pregnant women, pay for healthcare at the point of service. Nevertheless, it is still accessible because of the capping system.  Once a person has spent 2040Kr (£156) on healthcare services, they receive an exemption card. Treatment is then free for the rest of the year.

Health priorities

Similar to other European countries, Norway has an aging population. Given the challenges of this, the Norwegian government have been proactive. Around 30% of health expenditure is on long-term care. This includes services in nursing homes and palliative care. The ‘Live Your Whole Life’ (or Å leve hele livet) reform was a government initiative introduced in 2017 to improve the quality of care and promote independent living for the elderly. The reform included supporting socialisation and providing nutrition services. Ageing populations also bear the burden of neurodegenerative diseases. The Norwegian Institute of Public Health estimated that in 2019, 80,000 to 100,00 people were living with dementia in Norway. From 2015, the government launched the Norwegian Dementia Plan, with an updated 5 year plan outlined in December 2020. The initiative focuses on improving diagnosis, palliative care, and research on prevention and treatment of dementia.

In comparison to other Europeans, the Norwegian lifestyle is considered healthier, with lower levels of alcohol consumption and obesity rates. One of the main lifestyle challenges that are faced is from consumption of snus (moist tobacco). As the government drove anti-tobacco initiatives in the last 20 years, tobacco smoking rates reduced by 30% but snus consumption tripled among 16-24 year olds. To counteract this dramatic increase among the younger population, the government introduced a standardized tobacco packaging regulation in July 2017. The aim was to reduce the advertising effect and attractiveness of tobacco products.

In 2020, the leading cause of death was cancer, with lung cancer being the most frequent. Even so, Norway’s Country Health Profile 2019 from the European Commission showed that cancer survival rates for several cancers were consistently higher in Norway that the rest of the EU. This is attributed to early diagnosis and better treatment coordination.

Genomic medicine capabilities

Prenatal testing for foetal diagnosis in Norway is quite restrictive. Until May 2020, it was illegal for women under the age of 38 to have non-invasive prenatal testing (NIPT). Therefore, women who wanted to check foetal chromosomal abnormalities had to travel to Sweden or Denmark for the service. Due to recent changes in the Biotechnology Act, women from the age of 35 are now entitled to NIPT as a public health service. NIPT is not available to women under the age of 35 through the public health system, but it is available through the private system.

In comparison to prenatal testing, newborn screening (NBS) is extensive and offered to all. In 2018, the Norwegian government extended the program to include secondary use of NBS samples. Therefore samples became available as a part of the biobanking strategy for research purposes. This sparked an ethical debate because the samples were now being used for purposes other than helping newborn babies.  However, there are options to withdraw consent at birth, 1, 2 and 16 years old.

Genetic testing for predictive, pre-symptomatic and diagnostic purposes must be accompanied by genetic counselling at all stages. This also applies to the parents or guardians of minors under 16 who are tested. In 2018, there were 40 genetic counsellors in Norway. There is also a specific genetic counselling Master’s program at the University of Bergen which has an intake of 10 per year. Although the course does not incorporate clinical training placements meaning that the course is not registered with European Board of Medical Genetics (EBMG), most professionals have a medical background and train further to meet the required criteria. Despite a clear infrastructure to make genetic counselling available, there are limitations because services are only available at four regional state hospitals.

The Norwegian government developed a strategy for personalised medicine in public healthcare in 2016 for the 2017-2021 period. The strategy aimed to increase use of next generation or high-throughput DNA sequencing technologies in public healthcare settings, establish a nation-wide network of personalised medicine resource centres and develop competence guidelines for genetic counselling. The new strategy for 2023 – 2030 is based on the former personalised medicine strategy and outlines three strategic goals. These relate to equity of access, competence within the healthcare system, and improving the management and analysis of patient genetic data.

Biobanks are a highly valuable research infrastructure in Norway and provide a wealth of information.  Because of Norway’s long history of collecting health-related data using registries, biobanks have access to a huge amount of longitudinal data.

Notable projects

  • The Nord-Trøndelag Health Study (HUNT): One of the largest longitudinal health studies ever with samples collected from over 140,000 people since 1984. The study has 250,000 DNA samples biobanked in one place. Data and samples from the HUNT research centre are being used in around 300 national and international research projects. 
  • The BigMed project: A consortium of academic, industry and patient partners set up to identify and tackle the challenges in implementing precision medicine in Norway.
  • Matchmaker-ExchangeAn early stage data sharing tool on rare genomic variants, dubbed the “internet of genomics”, developed at Oslo University Hospital. Researchers can query rare genomic variants to match genotypic and phenotypic information.
  • Norwegian 1000 genomes project: A working database of over 1.5 million genetic variants from chromosomes of cancer patients for use in diagnosis. 
  • The Norwegian Mother and Child Cohort Study A combined cohort study and biobank where samples were collected from 95,000 pregnant women, 114,000 children, and 70,000 fathers between 1998 and 2008. The study aimed to identify risks in pregnancy and early childhood that could impact health later. 

Notable organisations and companies

  • NorSeq (Norwegian Consortium for Sequencing and Personalized Medicine): A partnership between genomic services, universities, and four university hospitals in Norway.   They perform high-throughput DNA sequencing and analyses for researchers all over Norway. They were the main COVID-19 sequencing provider during the pandemic and played an important role in epidemiological surveillance.
  • ELIXR-NorwayA service which provides open access bioinformatic tools, workflows and databases for life scientists.
  • The University of Oslo: The University has the largest Department of Medical Genetics in Norway. They investigate genetic drivers of disease and explore hereditary diseases.
  • Biobank Norway:A national infrastructure connecting biobanks in Norway, forming one of the largest biobanking resources in the world and enabling global collaboration.
  • University of Bergen: The University runs the country’s only Genetic Counselling program which enables 10 genetic counsellors per year to enter the workforce.

Notable individuals

  • Ketil WiderbergWiderberg is the General Manager of the Oslo Cancer Cluster. He recently led a healthcare industry meeting in Stockholm, where Swedish-Norwegian cancer cooperation was formalised with the signing of a Memorandum of Understanding.
  • Kristian HveemHveem is a Professor of Medicine and Clinical Epidemiology at theNorwegian University of Science and Technology. He is currently a Principal Investigator at the HUNT Biobank, National Director of Biobank Norway, and Leader of the Nordic Biobank Network.
  • Anna Wargelius: Wargelius is the Head of Research at the Institute of Marine Research. Using CRISPR-Cas9 gene editing, the research aims to eliminate the genetic mixing of modified farmed salmon and wild salmon to safeguard biological diversity and the salmon farming industry in Norway.
  • Jan Mohr: Mohr was a Norwegian-Danish Geneticist. He was the founding secretary of the European Society of Human Genetics (ESHG) and was one of the first scientist to use human gene mapping. Through his research on blood groups and genetic linkage, he discovered one of the first cases of the autosomal genetic linkage.
  • Eivind Hovig: Hovig is an Adjunct Professor at the University of Oslo and Oslo University Hospital leading Olso as part of ELIXIR-Norway alongside the Norwegian Directorate of Health. His academic research focusses on computational cancer genomics and melanoma systems biology.
  • Dag Undlien: Undlien is a MD who is head of the Department of Medical Genetics at Oslo University. His research experience is in genetics and epigenetics of monogenic and multifactorial diseases. He is also the head of NorSeq as well as chair of The Nordic Alliance for Clinical Genomics.

The future genomics landscape

Norway’s future genomics landscape is focussed on pioneering precision medicine in cancer. The country is keen to increase the use and accessibility of precision medicine in cancer diagnosis and treatment. “The infrastructure for precision diagnostics will improve Norway’s ability to attract clinical studies internationally, it will give more cancer patients the opportunity to participate in clinical trials and it will provide valuable data for further research,” said Ketil Widerberg, General Manager of Oslo Cancer Cluster.

In October 2020, the Norwegian government more than doubled the funding for personalised medicine from NOK 30 million to NOK 61.3 million. In 2022, the country has continued its pioneering efforts with three national initiatives: InPreD is a service that provides precision diagnostic and screening services to cancer patients who do not have treatment options; IMPRESS-Norway is a nationwide clinical trial that is partnered with large pharmaceutical companies (including Roche and Novartis) that provide cancer medicines; CONNECT is a consortium with public and private stakeholders that navigate the challenges ofimplementing precision cancer medicine in Norway. 

The three initiatives are highly interconnected. Patients screened using InPreD feed into the IMPRESS clinical trial, giving previously untreatable patients a new treatment option. The CONNECT consortium have rallied pharmaceutical companies onboard, providing a steam of drugs to the IMPRESS clinical trial.

Norway’s collaborative efforts in the fight against cancer extends beyond its borders. In May 2022, the University of Oslo (Norway) and the Karolinska Institute (Sweden) signed a Memorandum of Understanding outlining plans to collaborate on precision medicine and clinical studies for the advancement of cancer research between the two countries.

Aside from human genomics research, genetic analysis is becoming an important part of nature monitoring.  

References