Information for patients - Biobanking
Information for patients who have given consent to provide samples of biological material for scientific research
Introductory information
Scientific research on biological material samples in conjunction with their medical records is one of the most important steps in understanding the causes and progression of blood diseases, and in developing new investigative procedures and treatments. We will store your biological specimens that we have obtained as part of your examination or treatment at IHBT that are no longer needed for further medical care. Use of samples for research may also occur directly without prior storage. For this purpose, samples taken from your blood or other tissues (biological samples) are collected and stored in a facility called a Biobank. The main activities of the Biobank include the collection and long-term storage of biological samples from patients and healthy individuals, the collection of important data characterising the samples, and the sharing of samples between research sites. Samples are processed and stored according to standard operating procedures, ensuring their long-term storage in high quality. All donor information is stored in the database in pseudo-anonymised form for maximum data protection. The Biobank database also collects data on the health status of donors of biological material, which is important for evaluating the results of future research. The activities of the Biobank are carried out in accordance with applicable legislation and respect the ethical principles of biomedicine. Depositing your biological material samples in the IHBT Biobank is free of charge. You will not be charged any fees related to the storage or handling of your samples. You will not be entitled to any remuneration for providing your samples to the Biobank and will not be reimbursed for any expenses. Your biological material samples will be used for research purposes only. The samples will never be sold. However, research results may sometimes lead to the development of, for example, a genetic test, a drug, or other commercial product. In this case, you will not be entitled to any financial compensation related to the sale of such a product.
Who is the administrator of your personal data?
The Institute of Hematology and Blood Transfusion, ID 00023736, with registered office at U Nemocnice 2094/1, 128 20 Prague - Nové Město (hereinafter also referred to as the "Administrator" or "IHBT")
What data do we process about you in connection with the storage of biological material?
Biological material samples are stored in Biobank exclusively in pseudonymised form, i.e. using a meaningless numerical code that does not allow direct identification of a specific person. A specific person can only be identified by a competent person of the Biobank of the IHBT. In the context of scientific research activities, we process data about your health condition only to the extent necessary, in particular information about your diagnosis, information about your gender and age. Scientific research records are kept separate from medical records. The results of scientific research are not kept in the medical records of the donor of the biological material.
Why do we process and transfer your personal data to other research institutions at Biobank and what is the legal reason for this?
In order to be able to continue to improve the treatment of patients in the future, it is necessary to enable further scientific research. Research on human samples is one of the most important steps in understanding the causes and progression of blood diseases. It is also important for the development of new testing and treatment methods and diagnostics. Pseudonymised personal data to the extent necessary will be provided for samples that are provided to other research institutions following an application and approval process at the Institute for Human Cancer Research.
Thus, the processing of your personal data is necessary for the performance of the public interest task of research in this area pursuant to Article 6(1)(e) in conjunction with Article 9(2)(j) of Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation).
Who can we disclose your personal data to?
Your full identifying data are processed confidentially only by the IHBT and are never disclosed to anyone. The IHBT may provide samples in pseudonymised form upon official request from another research institution based in the EU. The Scientific Board of the IHBT Biobank will always thoroughly review each request, which will also be checked by the IHBT Ethics Committee. As a matter of principle, we do not transfer your personal data outside the EU region. Only anonymised data, i.e. data that can no longer be linked to your person and are not personal data within the meaning of the General Data Protection Regulation, may be transferred to third countries.
How long will we process your personal data?
We will process your data for as long as necessary for the purposes of scientific research. Please note that in many cases this can be decades.
Rights of the data subject
As a data subject, data protection legislation grants you a number of rights. However, some of these are limited by the nature of the reason for processing personal data. You have the following rights in relation to the personal data processed:
Right of access to personal data
You obviously have the right to know what data is being processed about you, for what purpose, for how long, where we obtained the data, whether and to whom we are transferring it. You also have the right to be informed of your other rights in relation to this data. This document is mainly intended to inform you, but we are ready to provide you with confirmation or clarification on any point of this information.
Right to rectification of personal data
If you discover that the personal data we process about you is inaccurate or incomplete, you have the right to request that we complete or correct it without undue delay.
Right to restriction of processing of personal data
This right allows you to request, in certain cases, that certain of your personal data be marked and not be further processed for a certain period of time. This is not the same as the right to erasure, as the restriction of processing is not permanent. You have the right to have us restrict the processing of your personal data if:
- you contest the accuracy of the data we process about you for the time necessary to verify its accuracy,
- we no longer need to process your personal data but you require it for the establishment, exercise or defence of legal claims,
If processing is restricted, the data may only be processed with your consent or for the establishment, exercise or defence of legal claims, for the protection of the rights of another person, whether natural or legal, or for reasons of important public interest.
Right to erasure
In certain cases, as a data subject, you may exercise the right to have your personal data erased, or the right to be forgotten. As far as processing in a database (register) is concerned, you will only be able to exercise this right in cases where your personal data is no longer needed for the purposes for which it was collected, i.e. scientific research.
Right to object to the processing of personal data
In view of the fact that the processing of your personal data is carried out for scientific research purposes, you have the right to object to the processing of your personal data on grounds relating to your particular situation. However, you cannot exercise your right to object to the processing of your personal data in the situation where we process some of your personal data in order to fulfil a scientific purpose in the public interest.
Right to lodge a complaint with a supervisory authority
The exercise of the rights set out so far is without prejudice to your right to lodge a complaint with the Data Protection Authority. You can find the current contact details directly on the website of the Data Protection Authority (www.uoou.cz). You can lodge a complaint at any time when you have doubts about whether your personal data is being processed as it should be, i.e. unlawfully or in breach of the law.
How can I exercise individual rights?
For all matters relating to the processing of your personal data, whether it is an enquiry, exercising a right, making a complaint or otherwise, you can contact our Data Protection Officer in the following ways:
- by post or in person at U Nemocnice 1, 128 00 Prague 2,
- by e-mail at poverenec@uhkt.cz,
We will process your request without undue delay, but within a maximum of one month. In exceptional cases, in particular due to the complexity of your request, we are entitled to extend this period by a further two months. We will, of course, inform you of any such extension and the reasons for it.