What is a biobank?
Samples for clinical studies and diagnostic purposes have been collected throughout the history of medicine. Methods for collecting samples and consent practices have varied greatly, depending on the legislation and policies of each period. The difference between traditional sample collections and the new biobank concept is that samples collected in a biobank can be used for a variety of future research needs, not just for a defined specific research purpose.
Biobanks are composed of samples and information
In addition to biological samples, appropriate sample and donor-related information is also collected with the donor’s permission. Information has been collected, for example, by questionnaires, during sampling, in the context of a medical examination, or during hospitalization. The data is stored in accordance with proper data processing and management practices, as defined by law.
Old and new biobank samples
The samples stored in a biobank can be divided into two categories according to their date of collection:
1) Old samples are samples that have been collected before 1.9.2013 for treatment, diagnostic purposes or medical research. The transfer of these samples to the biobank requires the assent of the regional Ethics Committee.
The sample donors will be notified of the planned transfer, so that they may disallow the transfer or, alternatively, give a new informed consent for biobank research. If personal communication to each sample donor is not possible in view of the large number of samples, their age, or for any other comparable reason, the notification about the transfer of the sample collection to the biobank will be done publicly. The samples can be transferred to the biobank in both cases, as long as the donor does not forbid the transfer. The donor also has the right at any time subsequently to deny the use of samples and data in biobank research, by giving written notice to the biobank.
2) New samples that are collected from 1.9.2013 onward for biobank research will be collected based on the donor’s informed consent to donate the samples to the biobank and use them in biobank research.
The use of samples in research
The samples and associated data are an important resource for medical research. The samples can be used, for example, to study the etiology of diseases or to develop and validate new diagnostic methods. The sample- and data sets can also be used for the development of personalized medicine, aimed at preventing, detecting and treating diseases in ways that are adapted to suit each patient individually. For example, there are numerous types and forms of cancer, and each patient reacts differently to the various treatments and drugs available. Therefore we expect that it will become increasingly important important to know the specific nature of an individual tumour and to find the most effective treatment for each individual patient. This requires extensive, often long-term, studies that also combine data from various registries.
The advantages of a biobank
The comprehensive use of existing sample collections in medical research has many benefits. Citizens do not have to be invited on multiple occasions to participate in surveys and donate new samples. Also, samples that have been collected at great expense can be used more efficiently for research purposes, aiding in the development of better treatments and medications. The development work can be done in cooperation with pharmaceutical companies, so that the research results can be translated into better treatments and drugs.
