Biobanks - Modern Treasuries of Medical Research

The term "biobank" first appeared in scientific literature back in 1996 (reference). In principle, the term can refer to any collection of biological samples. Nowadays, however, the term typically refers to organizations that collect and preserve human-origin samples, such as blood samples, along with health information obtained from the donors. The concept of biobanks also involves leveraging the collected data in diverse medical research endeavours.

Samples for biobanks are typically collected, for instance, during routine healthcare services. Donating a sample is fully voluntary, and written consent is mandatory. This consent can be cancelled at any point, following which the individual's information will cease to be used in subsequent research. Biobank consent encompasses not just sample donation but also the linking of data to basic individual information, such as age and sex, as well as health data retrieved from patient databases or registries.

Biobanks in Finland and worldwide

There are a total of 11 biobanks in Finland. Among these, six are public healthcare hospital biobanks: Auria Biobank, Northern Finland Biobank Borealis, Biobank of Eastern Finland, Helsinki Biobank, Central Finland Biobank, and Finnish Clinical Biobank Tampere. Additionally, there are four national biobanks: The Blood Service Biobank, The Finnish Hematology Registry and Clinical Biobank, Terveystalo Biobank, and THL Biobank, which is a part of the Finnish Institute for Health and Welfare (THL). Finland's biobank network also encompasses the Arctic Biobank of the University of Oulu, hosting extensive population-based sample collections from Northern Finland.

Biobank activities in Finland are governed by the Biobank Act, legislated in 2013, with an updated version taking effect at the beginning of this year. This legislation outlines the fundamental principles of biobank operations, covering aspects such as sample collection, storage, utilization, and the ethical and legal standards of research. Regarded as world-class, the Biobank Act has enabled Finland’s position among the world leaders in biobank-related business and research. Biobanking activities are overseen by the Finnish Medicines Agency, Fimea.

Finnish biobanks are highly organized, with eight operating under the Biobank Cooperative Finland (FINBB). FINBB's mission is to bolster the competitiveness of Finnish health and biomedical research by fostering collaboration among Finnish biobanks and attempting to standardize their infrastructure, operations, and procedures. A prime example of extensive cooperation among Finnish biobanks is the FinnGen research project, initiated in 2017, which aims to enhance understanding of the biological mechanisms of diseases and advance their diagnosis, prevention, and treatment.

Among the world's largest and most renowned biobanks are the UK Biobank (UK), China Kadoorie Biobank (China), and the Million Veteran Program (USA), each hosting health and genomic data from over half a million individuals.

What is biobank research like?

Biobank research differs significantly from traditional clinical research in several aspects. In clinical research, participants are typically selected carefully, and they may receive specialized treatments during the study. Conversely, biobank research involves the broad collection of samples and health information from a large population, including individuals who may not have any illness. In clinical research, participants are usually informed about the purpose of sample use, whereas those who consent to biobank participation are unaware of the specific studies their samples will be used for. Clinical research is often short-term and focuses on specific diseases or treatments, while biobank operations aim to establish a resource that can be utilized broadly in medical research for many years and even decades.

Traditional population-based studies also differ from biobank research in several ways. Population studies seek to gather and analyse data from a large and representative population, whether on a national, regional, or local scale, and data collections are often targeted over a specific period. Data collection methods in population-based studies include questionnaires, interviews, and health surveys, which are seldom utilized in biobank research, and, therefore, those may provide researchers with a more diverse dataset compared to biobanks in some aspects. Additionally, population-based studies may not always involve the collection of biological samples, whereas this is a fundamental aspect of biobank research. However, as both types of studies aim to investigate large numbers of individuals, they share common goals: to identify factors influencing health, understand the health status of the population, and generate insights to enhance healthcare practices.

Biobank research spans various medical fields. In 2018, the research activities utilizing data from Helsinki Biobank were most prominent in cancer research, cardiovascular diseases, lung diseases, and neurological diseases (reference).

By utilizing biobank data, researchers will gain access to massive amounts of data, which would otherwise take years to collect. Presently, genomic research heavily relies on biobank samples. Large genomic research projects can combine data from multiple biobanks, enabling researchers to analyse genetic markers from hundreds of thousands, if not millions, of participants.

An exemplary case of biobank research is the GenomiTerveys project, which was awarded the Biobank Study of the Year last year. The project, coordinated by Helsinki Biobank in 2021-2023, piloted an operating model for screening breast cancer risk-increasing genetic variations from biobank samples, and directing the identified variant carriers to healthcare for monitoring and treatment. The project leveraged genetic data from the FinnGen project.

The challenges of biobank research

The practical challenges in biobank research are primarily related to protecting personal data and properly using and sharing the data. Data collection, storage, and sharing procedures are strictly compliant with data protection laws and the EU's General Data Protection Regulation (GDPR). Various measures, such as sample pseudonymization, diverse encryption techniques, and rigorous monitoring of the computational environment handling biobank data, are implemented to protect the privacy of research participants.

Moreover, challenges extend to the storage of biological samples, necessitating large, well-equipped facilities secured by both physical and digital means, including access controls and surveillance systems. In addition, the preservation of the samples' quality must be closely monitored. What comes to the challenges in conducting research, those may vary across projects and researchers, and one blog post may not be enough to list all of them.

Why is biobank research important?

Biobank research is a globally significant contributor to health promotion and disease prevention, and its role in medical research is continually evolving. Overall, biobank research aims to advance public health by uncovering factors that influence disease mechanisms and by innovating treatment practices and novel medications. The research undertaken today holds the potential to foster the health and well-being of future generations.

Author

Eeva Sliz