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29 January 2018
Authors: Bożena Milanović, Emilia Strycharz-Angrecka
Authors: Bożena Milanović, Emilia Strycharz-Angrecka

Donate for science

Do you think that biobanking is the future? No, you are wrong - biobanking is the present! What is biobanking and why is it so important?

Donate for science

Do you think that biobanking is the future? No, you are wrong – biobanking is the present!

What is biobanking and why is it so important?

Biobanking is the process by which biological samples, such as blood, stool, tissue, cells or DNA are collected in biobanks for research use to improve our understanding of health and disease. In biobanks, samples are collected from plants and animals, including human specimens. It is a biorepository which collects, processes, stores and distributes biosamples with the associated data. 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 the future use in the other research.

The area of biobanking has changed – it begun with small, university-based repositories, which were developed for the research needs for specific projects. Over time, government supported repositories. Moreover, commercial (for profit) biorepositories were established. The data associated with the stored samples are more and more complex: from basics data such as date of collection and the diagnosis, to extensive information sets which consist of many aspects of the participant’s or patient’s phenotype. Now it rapidly extends into genetic, proteomic, and other “omics” information.

Samples and the associated data stored in biobanks can be shared with researchers in other countries across the world: researchers in universities, government institutes or industry (such as the pharmaceutical companies researching for new drugs). However, samples cannot be sold for profit. 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. This could lead to a better understanding of health and the development of new treatments. Furthermore, studies utilizing biobanked samples are useful in developing personalized therapeutics, progression and prognosis, targeting biomarkers in disease and implementing personalized medicine projects.

Biobanks… but 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 the response to the changing needs of technology, investigators, and regulatory pressures, resulting in the creation of a variety of biobanks. 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 BBMRI-ERIC exists 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 and one international organisation and is one of the largest European research infrastructures. It helps researchers to find the samples and data they need for their research through better utilisation of quality-defined biobanks and their samples or data in an ethically and legally compliant manner. Furthermore, it helps biobanks with their visibility, quality development and usability and advise them ethical and legal questions such as the European regulation framework. Finally, it helps European citizens by taking on the responsibility of paving the way from the high-quality research to the discovery.

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 to see if we can work out why some people go on to develop particular illnesses or conditions while others do not. Other biobank projects are focused on the specific conditions, and may involve both healthy volunteers and people.

Do we have 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, which was using a common method for samples and data collection. In 2014 the Ministry of Science and Higher Education organized the first international biobanking conference showing the real situation of the Polish biobanking infrastructures. Poland, a country with a population of over 38.5 million people, has a huge potential for biobanking of 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 a observer, has been participating in certain activities of the BBMRI-ERIC for 3 years and since autumn 2016 has been a full Member of BBMRI-ERIC. Participation as a member of the organization requires that Poland creates norms similar to other EU partners of BBMRI-ERIC.

Consortium of Polish Biobanks named as BBMRI.pl consists of seven well-established biobanks. Standards of biobanking, developing common quality system, creating unified IT solutions and establishing ethical and legal norms are respected by BBMRI.pl. The National Node of BBMRI.pl is located at the PORT, Polish Center for Technology Development, Biobank. PORT is the largest biobank in Poland, which is storing over 120,000 samples of the biological material. Samples are collected during population studies from cardiac, rheumatological and oncological patients. The collection of biological samples supports widespread studies including genetic, transcriptomics and metabolomics tests. Moreover, the Biobank the Polish Center for Technological Development is responsible for providing samples for the biomedical research, creating applications for bioethical committees and correcting projects’ documentation. Other members of BBMRI.pl Consortium are Wrocław Medical University of Gdańsk, Medical University of Warsaw, University of Łódź, Medical University of Lublin, Wrocław Medical University and the Regional Science and Technology Center in Chęciny.

I would like to donate to biobank. How can I do it and what will happen with my samples?

Before agreeing to take part in biobanking, people were always informed in writing about what they would be expected to do, and could always say no to the further involvement. 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). 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.

You may be asked by a doctor, nurse or a member of Biobank staff whether you would like to help by donating samples to the biobank. Your treatment will be independent on your decision. You may be given a survey to fill in about your health and eating habits. Your samples may be used by researchers from universities, hospitals or commercial companies. You can donate samples as blood or stool, which will be stored for several years and will be able to help in the development of the new methods of diagnosis or treatment  in the future. Your samples and data will only be given to the projects that have been approved by the Biobank Committee and the Research Ethics Committee.

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. Moreover, biobank take all the reasonable steps to keep your information private because your privacy is extremely important. The information about your health and the sample are used by Biobank but  never your identity.

Samples collected from you, survey and data from your materials will enable to improve treatment, to find new ways to prevent early death and disability from many different diseases.

Biosamples re-using?

Biobanking is very important step before data analysis. Data cannot be obtained without biosamples. However, biosamples should not be just stored at biobanks – they have to be re-used! Only data gained from biospecimens are valuable for the bioinformatics analysis. Only this pathway of reusing biosamples will have influence on the future of science!

 

Bibliography:

[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/

 

19 November 2018
AACR18 Special Conference Highlights