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29 January 2019
Authors: Bożena Milanović, Emilia Strycharz-Angrecka
Authors: Bożena Milanović, Emilia Strycharz-Angrecka

Biobanking: The Future of Science is Now 

Biobanks offer biological material collection, storage, and provision for research, as well as consultation and assistance in bioethics committee applications and project documentation. They provide an invaluable source of information to virtually all researchers. What does the biobanking situation in the worldwide and Polish grounds look like? What kind of material do they gather? How can one provide an institution with valuable samples? These are the questions that we will cover today.

What you’ll learn from this article?

  1. The definition of biobanking,
  2. What is their role in modern medicine and drug discovery-related research,
  3. Where such facilities are situated,
  4. What is the situtation of biobanking in Poland,
  5. How to leave a sample for future scientific endeavors,
  6. Conclusion

What is Biobanking, and Why is it Important?

Biobanking is the process by which an appropriate research facility collects biological samples, such as blood, stool, tissue, cells, or DNA to improve our understanding of health and disease. Biobanks gather data from plants and animals, including human specimens. It is a biorepository that collects, processes, stores, and distributes biosamples with the associated data. At the same time, other clinical information – such as height, weight, lifestyle questionnaire, or family history may also be recorded at the same time, to provide the context for the samples. Samples may be collected initially for one very specific research study, and then be kept for future use in other research.

The area of biobanking has changed – it began with small, university-based biorepositories developed for the research needs of specific projects. Over time, government-supported repositories took over, scaling up the endeavor. Finally, the time has come for private companies and laboratories to join the race. Over time, the data derived from the stored samples became more detailed – from primary data such as the date of collection and the diagnosis to extensive information sets that consist of many aspects of the participant’s or patient’s phenotype. Nowadays, it rapidly extends into genetic, proteomic, and other “omics” information.

Why do Biobanks Exist? Their Role in Modern Medical Research

Biobanks worldwide facilitate samples and associated data sharing. Such data collection benefits researchers from universities, government institutes, industry, and privately owned labs. The only exception is that the samples cannot be sold for profit. 

The data derived from such samples provide essential information contributing to new medical discoveries, widening our understanding of DNA function. Studies utilizing biobank samples are useful in developing personalized therapeutics, progression, and prognosis, targeting biomarkers in disease, and implementing personalized medicine projects.

The data from biobanks are essential to understand genetic risks for diseases caused by gene variants. In this situation, sharing information means that research can be conducted on larger numbers of people. The widened research range could lead to a better understanding of health and the development of new treatments 

Biobanks – Where Are They?

Biobanks have been established in many different countries such as the UK, the United States,  Canada, Finland, Estonia, Iceland, Australia, and South Korea, to name a few. Over the years, biobanks have evolved in response to the changing needs of technology, investigators, and regulatory pressures, resulting in the creation of a variety of biobanks.

International Efforts to Gather Ethical and Reliable Data with Biorepositories – BBMRI-ERIC

Biobanks have largely been involved in international efforts to harmonize data and samples; allowing for meaningful collaborations that span many countries, funding agencies, governance structures, and populations. For example, in Europe, there exists BBMRI-ERIC, which brings together all the main players from the biobanking field – researchers, biobankers, industry, and patients – to boost biomedical research. BBMRI-ERIC currently includes 20 countries, as well as one international organization, and is one of the largest European research infrastructures. It helps researchers find the samples and data for their research from quality-defined biobanks. As a result, the received data samples are gathered in an ethically and legally compliant manner.

BBMRI-ERIC also helps biobanks with their visibility, quality development, and approachability. This organization provides advisory services regarding ethical and legal issues – such as the European regulation framework. Finally, it helps European citizens by taking on the responsibility of facilitating the drug discovery process – from high-quality research to the clinical stages.

This type of cooperation among biobanks leads to increased statistical power and sample size, which is particularly important when studying rare diseases and gene variants with small effects. Some projects, such as the UK Biobank, recruit large groups of healthy people from across the population and then use the samples over time. That way, the researchers see if there is any reason some people develop particular illnesses or conditions while others do not. Other biobank projects are focused on specific conditions and may involve both healthy volunteers and people.

Are There Biobanks in Poland?

In Poland, numerous medical universities and scientific institutions store human biological samples for research. Unfortunately, unlike the other European countries, they have never collaborated as a network of biobanks with the usage of a common method for samples and data collection. 

In 2014, the Ministry of Science and Higher Education organized the first international biobanking conference. That shows the real situation of the Polish biobanking infrastructures. However, Poland – as a country with a population of over 38.5 million people – has a huge potential for biobanking various materials. 

Each member state of the European Union may apply for membership in the BBMRI-ERIC organization as an observer or as a member. Poland, as an observer, has been participating in certain activities of the BBMRI-ERIC for 3 years. Since autumn 2016, it has become a full-fledged member of BBMRI-ERIC. Such an obligation, however, has come with a requirement. Now, Poland has to regulate the norms on a national level similarly to other EU partners of BBMRI-ERIC.

Regulations of Biobanking in Poland – BBMRI.pl 

The Consortium of Polish Biobanks – named BBMRI.pl – consists of seven well-established biobanks. BBMRI.pl has set standards in such fields as:

  • → developing a common quality system, 
  • → creating unified IT solutions, 
  • → establishing ethical and legal norms. 

The National Node of BBMRI.pl is located at the PORT, Polish Center for Technology Development. PORT is the largest biobank in Poland, storing over 120,000 samples of biological material. Samples collected during their population studies from cardiac, rheumatological, and oncological patients support widespread studies including genetic, transcriptomics, and metabolomics tests. 

Moreover, the Biobank of the Polish Center for Technological Development is responsible for providing samples for biomedical research, creating applications for bioethical committees, and correcting projects’ documentation. Other members of BBMRI.pl Consortium are:

  • → The Wrocław Medical University
  • → University of Gdańsk, 
  • → The Medical University of Warsaw, 
  • → The University of Łódź, 
  • → The Medical University of Lublin, 
  • → The Wrocław Medical University, 
  • → The Regional Science and Technology Center in Chęciny.

I Would Like to Donate to a Biobank. How do I Proceed? 

When you’re in the hospital waiting for your treatment, you may be asked by a doctor, nurse, or a member of Biobank staff whether you would like to help by donating your samples. Don’t worry – your treatment will be independent of your decision. You may be given a survey to fill in about your health and eating habits. Before agreeing to take part in biobanking, people are always informed in writing about what they would be expected to do, and could always say no to further involvement. 

It is critical to have large collections of clinical samples with the associated health data and the ability to track health and clinical activities over time to understand genomic information and implement appropriate clinical genomic programs. That is why the researchers may track the health of the participants by looking at their past and future medical records – but only if people have given them permission to (follow-ups). 

What Happens to the Donated Biobanking Samples?

Your samples may be used by researchers from universities, hospitals, or commercial companies that have been approved by the Biobank Committee and the Research Ethics Committee. You can donate such samples as blood or stool, which will be stored for several years. They can contribute to the development of new diagnostic or treatment methods in the future. As a result, you can facilitate research that would lead to finding a way to prevent early deaths or disabilities.

What if I Change My Mind?

If you change your mind about the use of your samples and data you can resign at any time. Due to your request, Biobank will destroy any unused samples. Remember – the information about the sample – as health-related information is considered to be sensitive data by the GDPR and RODO  – is subjected to special protection by authorities related to the processing of personal data. That is why any institution that possesses data regarding your health will proceed with extreme caution in that regard.

Biobanks and Biorepositories: The Conclusion 

The prevalence of biobanks both worldwide and in Europe itself has undoubtedly contributed to a revolutionary acceleration in the field of drug discovery. The ubiquity of the samples and their potential for reuse makes them an invaluable resource for future research. This kind of data is protected by regulations that take special account of their protection. Therefore, if you have the opportunity to donate your genetic material to such a biorepository, do not hesitate. You can contribute to discoveries – and, as a result, lay your brick in saving people’s lives and health.

Works Cited:

[1] De Souza YG, Greenspan JS. Biobanking past, present and future: responsibilities and benefits. AIDS. 2013;27(3):303-12.

[2] Smith ME, Aufox S. Biobanking: The Melding of Research with Clinical Care. Curr Genet Med Rep. 2013;1(2):122-128.

[3] Witon M, Strapagiel D, Glenska-Olender J, Chroscicka A, Ferdyn K, Skokowski J, et al. Organization of BBMRI.pl: The Polish Biobanking Network. Biopreserv Biobank. 2017;15(3):264–269.

[4] http://www.healthtalk.org/peoples-experiences/medical-research/biobanking/what-biobanking-and-why-it-important

[5] http://www.bbmri-eric.eu/

[6] http://bbmri.pl/

 

 

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