Privacy Statement for the Research Register

Why is my data collected?

The aim of the Blood Service’s research and development activities is to assess and develop the quality, safety, adequacy, effectiveness of use and efficiency of the service chain of current and future products and services. The purpose of research and development activities is also to produce new scientific information and to promote the understanding of scientific methods, critical evaluation of research materials and reports, and application of the obtained research results in decision-making in the Blood Service.

Information on the Blood Service’s ongoing research projects is available on our website.

The ethics and legal grounds of the Blood Service’s research projects are carefully assessed. The legal grounds we use for processing under the EU General Data Protection Regulation varies from study to study, but is usually the performance of a task carried out in the public interest. Studies in which new samples are collected from the subject are evaluated by the Ethics Boards of University Hospitals. Studies carried out using old samples or data from biobanks are evaluated by the biobank granting the research material. Studies carried out using only register data are evaluated by the party disclosing the data, such as the authorities. In addition, the Blood Service evaluates all of its research projects internally.

What data is collected on me?

The exact data collected depends on the research project and can be found in the project details on our website.

Typically, we collect:

• Identification data, such as name and personal ID code
• Study consent data if the processing of samples or data in the study is based on consent
• Blood donation history data for the needs of blood donor research
• Patient data for the needs of organ transplant research
• Study-specific laboratory results, such as blood counts and genetic data
• Survey data on state of health or opinions about donation activities

How is my data obtained?

On a case-by-case basis, the Blood Service research activities utilise data on the subject’s blood and organ donation history and data obtained from patient registries, national social welfare and health care registries such as the statutory Care and Cancer Registries maintained by the National Institute for Health and Welfare, the registry on causes of death maintained by Statistics Finland, or from registries maintained by the Social Insurance Institution (e.g. registry on the special reimbursement of medicine expenses) on the state of health of the data subject or past medical treatment or examinations, as well as data from biobanks.

For what purposes is my data processed?

You data is processed for research in accordance with the Blood Service’s Research Strategy, which is:

• Ethical
• Open and critical
• Respectful of patients, voluntary blood, organ and stem cell donors and customers
• Effective

The aim of the Blood Service’s research and development activities is to assess and develop the quality, safety, adequacy, effectiveness of use and efficiency of the service chain of current and future products and services. The purpose of research and development activities is also to produce new scientific information and to promote the understanding of scientific methods, critical evaluation of research materials and reports, and application of the obtained research results in decision-making in the Blood Service. Information on the Blood Service’s ongoing research projects is available on our website.

Is my data transferred outside the EU?

As a rule, personal data in the Blood Service Research Project Registry is not transferred outside the EU and the EEA. For a special reason, the samples and data in the registry may be transferred or disclosed in research cooperation projects outside the EU and the EEA as well, following the appropriate protective measures required by the EU General Data Protection Regulation and Finnish data protection and research legislation. The grounds for transfer and protective measures to be used are evaluated on a case-by-case basis, depending on the grounds for processing and the recipient of the data.

In all cases, the Blood Service signs an agreement with recipient on the intended use of the samples and data in research, the period of permitted use, restrictions on disclosure to third parties, and obligation to return the data.

How is my data protected?

Employees of the Blood Service are under obligation to maintain confidentiality.

Access to the filing system is restricted by user credentials and permitted only to those individuals required to do so due to their duties.

Access to data in the filing system and the addition, editing and erasure of data is restricted with access rights.

Printed documents that contain personal data are stored by the Blood Service in locked premises with controlled access and in locked containers.

The samples and data are disclosed only to research projects assessed by the Blood Service to be ethically acceptable and trustworthy.

The samples and data are always processed encoded in research projects. Information on the personal identifiers of the sample and the person providing the data is kept separate from the study data, access to it is restricted to the person in charge of the study and it is used only in exceptional situations, such as when various data is combined, for example, to create the data set used in the study.

Is my data used for profiling or automated decision-making?

You will not be automatically profiled based on your data. We also do not use your data for automated decision-making.

For how long is my data stored?

The storage period for samples and data is specified in the permit for each individual study. The samples and data are destroyed at the end of the study. If they have been received from a biobank, they will be returned to it. If required by the legislation applicable to the study, samples are archived for the period required by law after the completion of the study.

How can I review my data and rectify any inaccurate information?

You may access and check the studies you are involved in and the types of data collected about you by filling in, printing and signing the request for data form available on the Blood Service website and sending it to us by mail or in person. The Blood Service will provide you with information on your data in the research project registry by mail. Individual research results are not returned to subjects because the significance of an individual person’s results is not known and the processing of research samples does not meet the requirements for information used in health care.

You may request the rectification of inaccurate information in writing by using the rectification request form found on the Blood Service’s website.

Contact details may also be requested to be updated over the phone.

Can I request the erasure, or object to the use, of my data?

Yes. However, for example, in order to verify the accuracy of research results, it may sometimes be necessary to store the material used in research for the duration of the study even if the subject has withdrawn his or her consent.

If you would like to know in which studies you data is processed, fill in the Blood Service’s request for data form as applicable, sign it and submit it to the Blood Service.

If you would like to prevent the processing of your data in the Blood Service’s research activities and request the erasure of your data, fill in the prohibition of research form, sign it and submit it to the Blood Service.

Can I lodge a complaint with the authorities?

If you feel that the processing of your personal data is not lawful, you may lodge a complaint with the competent supervisory authority

Office of the Data Protection Ombudsman

Ratapihantie 9, 6th floor, 00520 Helsinki, P.O. Box 800, 00521 Helsinki

Switchboard: +358 (0)29 566 6700

Email (registry): tietosuoja(at)om.fi

Contact information

Finnish Red Cross, Blood Service

Härkälenkki 13

FI-01730 Vantaa, Finland

tel. +358 (0)29 300 1010

info(at)veripalvelu.fi

Person in charge of the filing system

Jukka Partanen tel. +358 (0)29 300 1759