Information for patients - Biobanking
Information for patients who have provided consent to provide biological material samples for scientific research
Introductory information
Scientific research of biological material samples in connection with their medical records is one of the most important steps for understanding the causes and course of blood diseases, as well as for developing new examination procedures and treatment methods. We will store your biological samples, which we obtained as part of your examination or treatment at the IHBT, and which are no longer needed for further medical care. The use of samples for research may also occur directly without prior storage. For this purpose, samples taken from blood or other tissues (biological samples) are collected and stored in a facility referred to as 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 characterizing the samples, and the sharing of samples between research facilities. Samples are processed and stored according to standard operating procedures, which ensures their long-term storage in high quality. All information about donors is stored in the database in pseudonymized form for the purpose of maximum protection of personal data. The Biobank database also collects data on the health status of biological material donors, which is important for evaluating the results of future research. The activities of the Biobank are conducted in accordance with applicable legal regulations and respect the ethical principles of biomedicine. Storage of your biological material samples in the IHBT Biobank is free of charge. You will not be charged any fees related to storage or handling of samples. At the same time, you will not have any claim to any remuneration for providing samples to the Biobank and you will not be reimbursed for any expenses. Your biological material samples will be used only for research purposes. Samples will never be subject to sale. 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 have no claim to financial compensation related to the sale of such a product.
Who is the controller of your personal data?
Institute of Hematology and Blood Transfusion, ID 00023736, located at U Nemocnice 2094/1, 128 20 Prague – Nové Město (hereinafter also "the controller" or "IHBT")
What data about you do we process in connection with the storage of biological material?
Biological material samples are stored in the Biobank exclusively in pseudonymized form, i.e., using a meaningless numerical code that does not allow direct identification of a specific person. Only a competent person of the IHBT Biobank can identify the specific person. Within the scope of scientific research activities, we process data about your health status, and only to the extent necessary, in particular information about your diagnosed diagnosis, information about your gender and age. Scientific research records are kept separately from medical documentation. Results from scientific research activities are not recorded in the medical documentation of the biological material donor.
Why do we process and transfer your personal data in the Biobank to other research institutions and what is the legal basis for this?
To enable further improvement of patient treatment in the future, it is necessary to allow further scientific research. Research of human samples is one of the most important steps for understanding the causes and course of blood diseases. Furthermore, also for the development of new examination and treatment methods and diagnostics. For samples that will be provided to other research institutions on the basis of a request and approval process at the IHBT, pseudonymized personal data will be provided to the extent necessary.
The processing of your personal data is therefore necessary to fulfill a task carried out in the public interest consisting of research in this field in accordance with 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).
To whom may we provide your personal data?
Your complete identification data is processed confidentially only at the IHBT and is never provided to anyone. The IHBT may, on the basis of an official request from another research institution located in the territory of the EU, provide samples in pseudonymized form. The Scientific Council of the IHBT Biobank will always carefully review each request, which will also be reviewed by the Ethics Committee of the IHBT. We do not provide your personal data to third parties outside the EU region as a rule. Only anonymized data can be transferred to third countries, i.e., data that can no longer be attributed to your person in any way and which are not personal data within the meaning of the General Data Protection Regulation.
How long will we process your personal data?
We will process your data for the period necessary for the purposes of scientific research. Please note that in many cases this is also decades.
Rights of data subjects
As a data subject, personal data protection regulations grant you a number of rights. However, some of them are limited by the nature of the reason for processing personal data. With regard to the personal data being processed, you have the following rights:
Right of access to personal data
Of course, you have the right to know what data is being processed about you, for what purpose, for how long, where we obtained this data, whether and to whom we provide it. At the same time, you have the right to be informed about other rights relating to this data. This document is intended in particular to inform you, however, we are prepared 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 supplement or correct it without undue delay.
Right to restrict processing of personal data
This right allows you in certain cases to request that some of your personal data be marked and that such data no longer be subject to further processing for a certain period of time. This is not the same as the right to erasure, since restriction of processing is not permanent. You have the right to request that we restrict the processing of your personal data if:
- you contest the accuracy of the data we process about you, for the period necessary to allow the accuracy of such data to be verified,
- we no longer need to process your personal data, but you require it for the establishment, exercise or defense of your legal claims,
If processing is restricted, data may be processed only with your consent, or for the purposes of the establishment, exercise or defense 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, you as a data subject may exercise the right to erasure of your personal data or the right to be forgotten. With regard to processing in a database (register), 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 processing of personal data
Given that the processing of your personal data takes place for the purposes of scientific research, you have the right to object to the processing of personal data for reasons relating to your particular situation. However, you cannot exercise the right to object to the processing of personal data in a situation where we would process some of your personal data for the purpose of fulfilling a scientific project in the public interest.
Right to lodge a complaint with the supervisory authority
The exercise of the rights set out above does not in any way affect your right to lodge a complaint with the Office for the Protection of Personal Data. Current contact details can be found directly on the website of the Office for the Protection of Personal Data (www.uoou.cz). You can lodge a complaint at any time you have doubts about whether your personal data is being processed as it should be, i.e., unlawfully or in breach of legal regulations.
How can individual rights be exercised?
In all matters related to the processing of your personal data, whether it is a question, exercise of rights, filing a complaint or anything else, you can contact our Data Protection Officer in the following ways:
- by mail or in person at the address U Nemocnice 1, 128 00 Prague 2,
- by email to the email address poverenec@uhkt.cz,
We will process your request without undue delay, but no later than 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. Of course, we will inform you of any such possible extension and its justification.