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Privacy Statement - Stem Cell Registry

The Stem Cell Registry is a personal data file maintained by the Finnish Red Cross Blood Service.

Why is my data being collected?

Stem Cell Registry member:

  • based on tissue type information, a suitable stem cell donor is searched for a patient
  • Stem Cell Registry membership is voluntary and based on consent

Stem Cell Registry member who has donated stem cells:

  • we have a legal* obligation to maintain donors’ and recipients’ personal information in order to ensure the traceability of transplants

What information is collected about me?

Stem Cell Registry member:

  • name, personal identification number, contact information (address, telephone number, email address), blood group, tissue type information, gender

Stem Cell Registry member who has donated stem cells:

  • health information relevant to suitability for donation
  • procedures related to the donation/collection of stem cells

How is my data obtained?

Stem Cell Registry member:

  • the person himself/herself gives the information voluntarily when joining the Stem Cell Registry

Stem Cell Registry member who has donated stem cells:

  • as the selection process progresses, from the person himself/herself, from the examining doctor and from the laboratory and/or imaging results, and, where appropriate, from the parties that have taken care of the donor if the donor gives his/her consent
  • address details maintained by the Stem Cell Registry are updated through the address service of Posti or that of the Local Register Offices
  • donation information is received from the Collection Centre

Why is my data procecced?

Stem Cell Registry member:

  • information concerning tissue type, blood group, gender and age is used in search for a suitable stem cell donor for a patient, and contact information is used for communication purposes
  • health information is used to assess suitability for donation and to ensure the safety of both the donor and the patient

Stem Cell Registry member who has donated stem cells:

  • name, personal identity number, health information relevant to suitability for donation and data related to the donation are used in order to ensure statutory traceability

Is my data disclosed to parties outside the Blood Service? If so, why and where?

Stem Cell Registry member:

  • The name and personal identification number of the registry member are disclosed only to the person taking the blood sample for identification purposes.
  • The identification code of the registry member or the sample number for identifying the sample are disclosed to contract laboratories conducting laboratory tests
  • Information concerning tissue type, blood group, gender and birth year is disclosed to the international central registry from which both the Stem Cell Registry and foreign registries can search for a suitable donor for a patient

Stem Cell Registry member who is about to donate stem cells:

  • The name and personal identification number of the donor are disclosed to the Collection Centre in order to identify the person
  • When the patient to whom a member of the Stem Cell Registry is donating is abroad, information concerning tissue type, blood group, gender and birth year together with infection test results are disclosed to the relevant foreign stem cell registry. The information is provided in order for the foreign registry to be able to select the most suitable donor for their patient
  • When a member of the Stem Cell Registry has been selected as a donor, in addition to those listed above, a summary of health check-up results is disclosed to the foreign stem cell registry.


 


Is my information transferred outside the EU?

  • Your sign-up sample will be sent to the United States for tissue-typing purposes
  • In addition, information concerning your tissue type, blood group, age and gender is disclosed to the international central registry, through which the information can also be viewed outside the EU


How is my data being protected?

  • Sign-up samples are pseudonymised (all samples are identified using a sample number, and they never include any names and/or personal identification numbers)
  • Samples are sent to a laboratory with which the Blood Service has a written agreement for testing
  • The terms and conditions of agreement include information on agreed practices related to data protection, such as the obligation of professional secrecy, practices for information disclosure as well as practices for discarding samples and results
  • Information sent to the international central registry never includes the name or personal identification number of a donor candidate, only a registry code
  • Data is only processed by those persons who need to process the data as a part of their work duties
  • People processing data are bound by an obligation to maintain secrecy


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

  • No

How long is my information kept?

Stem Cell Registry member:

  • Your data are stored for as long as you are a member of the Registry.
  • Data that are transferred to the international central registry (tissue type, blood group, age and sex) may remain accessible after your membership has ended.

Stem Cell Registry member who has donated stem cells:

  • Data are stored for 30 years following the donation.
  • Data that are transferred to the international central registry (tissue type, blood group, age and sex) may remain accessible after your membership has ended.

Due to the nature of the Stem Cell Registry’s activities as part of an international network, it is possible that data transferred to the international central registry (tissue type, blood group, age, sex) continue to be stored in other registries (such as details of donor searches performed on the patient) after they are erased from the Stem Cell Registry and the central registry.


How can I check my data and correct any inaccurate information?

Fill in, print and sign the information request form found on the Blood Service’s website and submit it to the Blood Service by mail or in person. The Blood Service will send an extract of the personal data concerning you contained in the filing system to you by mail. You may request for rectification of inaccurate information in writing by using the rectification request form found on the Blood Service’s website. In case the request for rectification concerns your contact details, you may ask those to be rectified also by phone.


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

Yes, if you are a member of the Registry but have not donated stem cells.

Due to the nature of the Stem Cell Registry’s activities as part of an international network, it is possible that data transferred to the international central registry (tissue type, blood group, age, sex) continue to be stored in other registries (such as details of donor searches performed on the patient) after they are erased from the Stem Cell Registry and the central registry.

Can I lodge a complaint with the authority?

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

Contact information

Finnish Red Cross, Blood Service
Kivihaantie 7
FI-00310 Helsinki, Finland
tel. +358 29 300 1010, kantasolurekisteri(at)veripalvelu.fi

*) The Finnish Act on the Medical Use of Human Organs, Tissues and Cells (101/2001)

Person in charge of the personal data file:

Anne Arvola, Head of Stem Cell Services, tel. 029 300 1571