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World of Genomics: Sweden

Bea Trottier 25 October 2022

In our latest World of Genomics piece, we are heading to Sweden – a Nordic country famous for its breath-taking landscapes, “Fika” coffee culture and, of course, ABBA. Besides being one of the happiest countries in the world, the Kingdom of Sweden is also the birthplace of two of the biggest names in the science community: Alfred Nobel (chemist, engineer and prolific inventor who founded the Nobel Prize) and Carl Linnaeus (the father of modern taxonomy). Overall, Sweden ranks fifth globally for Nobel Laureates – so it should come as no surprise that this Scandinavian country is renowned as a hub for science and technology. If you want to learn more about Sweden’s impressive gerontological research, renowned healthcare services, and its “ticking time bomb” of an ageing population – here’s your chance.

The population of Sweden

Sweden (or Sverige in Swedish) is the largest Nordic country. It borders Finland to the east, Norway to the west and connects to Denmark in the southwest by a bridge-tunnel across the Öresund. Stockholm is Sweden’s capital and Scandinavia’s largest urban area, with 980,000 inhabitants. 

Figure 1: Figure 1 | Map of Sweden (Source: Canva)  

Since prehistoric times, Sweden has been inhabited by the Germanic people, comprising two key tribes: the Geats (who inhabited the south) and the Swedes (who inhabited the north). Following the death of 1/3 of the Scandinavian population during the Black Death in the 14th century, Scandinavia became increasingly threatened by the Hanseatic League (a commercial and defensive confederation of city states in Central and Northern Europe). This eventually led to the formation of the Kalmur Union (a union of the three kingdoms of Denmark, Sweden and Norway) in 1397, which Sweden eventually left in 1523. An expansion of Swedish territories began when Sweden became involved in the 30 Years’ War (1618-1648), resulting in the creation of the Swedish Empire.

Initially, kings were elected in Sweden, but in 1544 the parliament changed this rule, and the crown was instead passed on to the king’s descendants. Since the mid-1800s – and during the two World Wars – Sweden has remained neutral, following the doctrine of “nonalignment in peace aiming at neutrality in war.” The country joined the EU in 1995 but has not yet adopted the euro, preferring instead to use the Swedish krona.

Overall, Sweden is a very ethnically homogeneous society, though recent immigration to the country has increased diversity. Between 1970 and 1990, net immigration accounted for three-fourths of population growth, with most immigrants coming from the neighbouring Nordic countries. However, Sweden also has a history of receiving large numbers of asylum seekers from Asia and Africa. By 2016, one in six Swedish residents had been born outside the country, and this has subsequently resulted in tighter restrictions on immigration in the years since.

Geographic and demographic information

Summary statistics

  • Land area: 450,295km2
  • Gross domestic product (GDP):
    • Total: $575 billion
    • Per capita: $50,000

Population statistics

  • Population size: 10,415,811 (2021)
  • Birth rate: 11 per 1000 people (2020)
  • Death rate: 10 per 1000 people (2020)
  • Infant mortality rate: 2 per 10000 live births (2020)
  • Life expectancy: 82.5 (2020)
    • Male 2020 estimate: 81 years
    • Female 2020 estimate: 84 years
  • Ethnicities: Most of the population are ethnic Swedes (80.3%), but around 19.6% were born in another country. The most popular countries of origin are Syria (1.9%), Iraq (1.4%), Finland (1.4%), Poland (0.91%), Iran (0.76%) and Somalia (0.67%). This data represents country by birth, but it is also important to note that the indigenous Sami people represent around 20-40,000 people.

Healthcare system

Nordic countries have a reputation for their excellent healthcare services and Sweden is no exception – at least in terms of accessibility. The Swedish healthcare system is decentralised and universal, meaning it is accessible to all and the local government and county councils are responsible for providing these services. Sweden’s health expenditure represents 11% of its GDP and is primarily funded by taxes. To ensure accessibility, a law exists to cap hospitalisation fees to 100 Kr (Swedish Krona) per day, which is around £8. Fees are also capped at 1,100 Kr (£90) for ambulance or helicopter services, 2,350 Kr (£191) for annual prescription and 1,150 Kr (£94) for consultation services in a year.

Like most universal healthcare systems, medical waiting lists are an uphill struggle. To counteract this challenge, Sweden has implemented a wait-time guarantee, known as vårdgarantin. This guarantee ensures patients will be listed at a healthcare centre the same day they seek medical care and receive a medical assessment within three days. Vårdgarantin also stipulates that patients receive an appointment for their first visit to a specialist clinic within 90 days and have an appointment for treatment within the following 90 days.

In 2010, private healthcare insurance became available in Sweden. Although only 1 in 10 citizens choose private healthcare over the universal system, its use has been increasing due to long waiting times, limited hospitals and the priority treatment of emergency cases.

Health priorities

Sweden’s improving social welfare and healthcare systems, combined with a diminishing birth rate, has left the country with an ageing population. In 2021, over 20% of the population was above 65 years old. As one of the first countries to experience rapid population ageing, this has been a long-standing issue in the country that has caused social welfare benefits to stagnate and continues to impact the economy. Since 1749, population data has been collected in Sweden, providing a thorough insight into demographic changes. The findings of Sweden’s first ever population report were classified as state-secrets because they revealed that the country had less than 2 million inhabitants after a string of crop failures, epidemics and catastrophic wars with Russia. These early records also showed that 8% of the population was 65 or older. The proportion of elderly Swedes steadily rose from this point and in the four decades following 1860, the proportion of citizens aged 65 and over doubled.

In 2020, diseases of the circulatory system were the biggest killers in Sweden, followed by cancer. Sweden has a long history of gerontological research and has been the source of several impactful longitudinal studies, including SATSA (the Swedish Adoption Twin Study of Ageing) and the Betula study of cognitive ageing and memory changes in old age at Umeå University.

As a result of Sweden’s ageing population, neurodegenerative disorders have also become increasingly prevalent. Data published by the World Health Organisation in 2020 revealed that Alzheimer’s and dementia are responsible for 14% of the total deaths in Sweden, making it 10th in the world for the number of deaths caused by these diseases. In 2018, the Swedish Government launched a national dementia initiative that emphasised improving the quality of dementia care. During the 1960s, Sweden had one of the highest global suicide rates. There is a common misconception that these rates remain high today, but this myth has been debunked. Sweden saw a gradual decrease in suicide from 1960 to the early 2000s, when it started to plateau. The National action programme for suicide prevention, by the National Board of Health and Welfare (SoS) and the Swedish Institute of Public Health (FHI), was approved in 2008. The initiative consists of nine action policies, including the dissemination of knowledge around evidence-based suicide prevention, the reduction of alcohol consumption, and an increased awareness of suicidal individuals among healthcare professionals. 

Genomic medicine capabilities

Prenatal genetic testing is extensive in Sweden. 70 different monogenic disorders can now be diagnosed prenatally in Sweden, with analyses conducted at 6 university-affiliated hospitals and 1 county hospital. Roughly 6% of new-borns have been cytogenetically screened during pregnancy and around 90% of the analyses are from amniocentesis (amniotic fluid testing). Despite widespread adoption, prenatal testing fuelled controversy in the country when it was revealed that 22% of mothers who discovered their child had a chromosomal abnormality chose to terminate the pregnancy.

According to Swedish law, genetic testing must always be accompanied by genetic counselling. A simple form of genetic counselling has been available in Sweden since the 1940s, largely due to a eugenics movement at the time and the work of Swedish professor Nils von Hofsten, who practiced a rudimentary form of genetic counselling within the state-governed Medical Board.  The demand for genetic counselling has continued to rise ever since. In 2018 it was estimated that there were around 40 genetic counsellors in Sweden. Though there are no formal training programmes available, an educational pathway was recently developed aiming to certify genetic counsellors for clinical genetics work.

Genomic Medicine Sweden (GMS) is an initiative set out to improve precision medicine across Sweden. GMS encompasses seven regional Genomic Medicine Centres (GMC) which act as integrated platforms between patients, healthcare providers, academia and SciLifeLab. GMS primarily works with rare diseases, solid tumours, haematological malignancies, infectious diseases, and pharmacogenomics. In 2021, 7,000 genomes were sequenced to help diagnose patients with rare diseases. Some of GMS’s other recent work includes the successful targeted treatment of a child with neuroblastoma.

Around 450 biobanks exist in Sweden, containing over 150 million samples. Biobank Sweden is a national infrastructure for biobanking that enables collaboration between academia, healthcare, industry, and patient organisations, with the goal of improving healthcare and research. Many biobanks have also branched out from the Karolinska Institute in Stockholm. For example, the Brain Bank aims to facilitate studies on ageing, development and diseases of the human central nervous system. The Developmental Tissue Bank is another facility that provides researchers with embryonic and foetal tissue.

Notable projects

  • SciLifeLab: A resource that provides access for life scientists to a range of pioneering technologies in molecular biosciences.
  • SweGen: A map of genetic variation in the Swedish population that acts as a resource for clinical genetics laboratories and for sequencing-based association studies.
  • BBMRI-ERIC: A tool that collects and makes information about biobanks and research samples accessible to researchers.
  • The DNA-project: A genetic project established to provide history and genealogy researchers with more information about the origins of the Swedish villagers (Svenskbyborna) and the Swedish population in the Baltic region.
  • The H70 study: This longitudinal study of 70-year-olds began in Gothenburg in 1970 and found dramatic improvements in the health of those who were more active in all aspects of life (including sexual activities).
  • The Betula Study: A 25-year-old project that aims to understand how memory function changes with ageing, and to identify risk factors and early preclinical signs of dementia.
  • SATSA (Swedish Adoption Twin Study of Ageing): SATSA is a longitudinal study involving questionnaires and health examinations. It was established to study the environmental and genetic factors that are involved in individual ageing.

Notable organisations and companies

Notable individuals

  • Maria Ankarcrona: A Professor of Experimental Neuro-Geriatrics at the Karolinska Institute whose team focuses on the role of the mitochondria on cell regeneration in Alzheimer’s disease.
  • Jan Arvid Böök: Böök was a Professor of Medical Genetics at Uppsala University and recognised as a pioneer of genetic testing, thanks to his establishment of one of the first modern laboratories for chromosome analysis in the 1950s.
  • Arvid Carlsson: Carlsson was a neuropharmacologist, best known for his work on the effects of dopamine in Parkinson’s disease, for which he was awarded the Nobel Prize in Physiology or Medicine in 2000.
  • Håkan Karlsson: As a principal researcher in the molecular genetics of psychiatric disorders, Karlsson has used Swedish biobanks to show that deficits in key factors of the acute phase response at birth are risk factors for psychiatric illnesses, such as schizophrenia and autism.
  • Richard Rosenquist Brandell: Brandell is currently Director for the National Diagnostics Development Platform in SciLifeLab and co-founder of the Genomic Medicine Sweden initiative.
  • Svante Pääbo: Pääbo is a Swedish evolutionary geneticist who was recently awarded the Nobel Prize in Physiology or Medicine for his discoveries surrounding extinct hominins and human evolution. He sequenced the genome of the Neanderthal and made the extremely significant discovery of the previously unknown Denisova hominin.

The future genomics landscape

Sweden’s long-standing dedication to gerontology remains one of its most impressive feats, but there’s still a long way to go in finding preventative strategies for age-related diseases, such as Alzheimer’s. Furthermore, little is being done to tackle Sweden’s ageing population. This is considered by many to be a ticking time bomb that will inevitably cause strains on the universal healthcare system.

After criticism that the current legislation is unclear, outdated, and creates unnecessary and costly administration, a new Biobanks Act is due to become law in July 2023. This will include several changes to the legislation. For example, the new Act will cover all samples regardless of where they are collected from, unlike the current Act that only applies to samples collected within healthcare. From 2023, direct consent to collect and preserve samples will also no longer be required, so long as the patient has consented to care or treatment and has received information in accordance with the Biobanks Act. This new legislation should help reduce administrative costs and speed up the process during clinical trials, without jeopardising the sample donor’s protection.

Elsewhere, one of the goals of the GMS initiative is to partner with other countries to advance precision medicine and its implementation in healthcare. So far in 2022, GMS has announced partnerships with the Centre for Personalised Medicine in Germany and the Danish National Genome Centre. In the future, there is hope that through forming relationships with other pioneers in the genomics space, this initiative will succeed in its aim of advancing precision medicine in Sweden.

References

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