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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 does the FRC Blood Service need my personal data?

All data subjects included in the Stem Cell Registry:

  • Tissue type information is used to look for suitable stem cell donors for patients.
  •  Joining the Stem Cell Registry is voluntary and based on consent.

Data subjects who have previously donated stem cells:

  • The controller of the Stem Cell Registry has a legal* obligation to maintain donors’ and recipients’ personal information in order to ensure the traceability of transplants.

What information is collected about me?

All data subjects included in the Stem Cell Registry:

  • Upon first joining the Stem Cell Registry, data subjects are asked to provide their name, personal identification number and contact information (address, telephone number and email address), in addition to which their blood group, tissue type and gender are recorded. 
  • Data subjects who have been tested for their suitability as a donor for a specific patient will also have various health-related data (results of infection tests and information on any previous pregnancies and blood transfusions) on their file.

Data subjects who have previously donated stem cells:

  • Health-related data relevant to each data subject’s suitability as a donor
  • Information about procedures performed in connection with previous donations / collection of stem cells
  • Where a data subject has been adversely affected by a stem cell donation in the past, the data file will also include information about any injuries sustained and/or property damage incurred by the donor and copies of documents relating to any claims for damages.

Where does the Stem Cell Registry get the information?

All data subjects included in the Stem Cell Registry:

  • Data subjects are asked to provide certain information upon first joining the Stem Cell Registry. Joining the Stem Cell Registry is voluntary.

Data subjects who have undergone further testing or who have previously donated stem cells:

  • As the selection process progresses, more information is collected from data subjects themselves, from the examining physician and from any parties performing laboratory and/or imaging tests as well as, where appropriate and subject to the data subject’s consent, from any parties that have previously treated the donor.
  • Address details held in the Stem Cell Registry are updated whenever data subjects notify the postal service or their Local Register Office of a change of address.
  • Information about data subjects’ previous donations is supplied by Collection Centres.
  • Information about any personal injuries sustained or property damage incurred in connection with previous donations is collected from data subjects themselves or, with their written consent, from the care units that treated them.

For what purposes are my personal data used?

All data subjects included in the Stem Cell Registry:

  • Information concerning data subjects’ tissue type, blood group, gender and age is used to look for suitable stem cell donors for patients, and contact information is used for correspondence with data subjects. 
  • Data subjects’ health information is used to assess their suitability for donation and to ensure the safety of both donors and patients.
  • The information on data subjects’ tissue type, blood group, gender and year of birth is also used for research purposes and to improve the structure and performance of the Stem Cell Registry. All other personal data are excluded to ensure that individual data subjects cannot be identified when the information held in the data file is used for these purposes.

Data subjects who have previously donated stem cells:

  • Data subjects’ name, personal identification number, health-related suitability data and details of donations are needed to ensure statutory traceability.
  • Information on the number and types of data subjects’ previous donations, the age and gender distribution of the data subjects as well as their tissue types are used to compile statistics on the functioning of the Stem Cell Registry. Data subjects’ names, personal identification numbers and contact details are excluded when the information held in the data file is used for these purposes.

Can my personal data be shared with others besides the FRC Blood Service? If so, why and with whom?

All data subjects included in the Stem Cell Registry:

  • Each new data subject who is entered into the data file is given a personal donor ID. The first sample that data subjects give upon joining the Stem Cell Registry and their donor ID are sent to a laboratory for tissue-typing and to establish their blood group.
  • Each data subject’s donor ID, tissue type, blood group, gender and year of birth are uploaded to an international central data repository, which can be accessed via both the Stem Cell Registry and its foreign counterparts to search for suitable donors for patients.
  • A blood sample is taken whenever a data subject’s suitability as a donor for a specific patient is assessed. The data subject’s name and personal identification number are disclosed for identification purposes to the person who takes the blood sample.
  • The laboratories that test samples are given the relevant data subject’s donor ID or a sample number for identification purposes.

Data subjects who are undergoing further testing to establish their suitability as a donor for a specific patient or who are about to donate stem cells:

  • Each prospective donor’s name and personal identification number are given to the physician performing the suitability assessment as well as to the Collection Centre’s staff for identification purposes. The data are stored in HYKSin Oy’s and HUS’s patient databases.
  • The hospital where the patient is being treated is only given the data subject’s donor ID as well as information on their tissue type, blood group, gender and year of birth, results of infection tests and any health-related data relevant to their suitability as a donor.
  • Any foreign organisations that are looking for suitable donors for their patients are only given the donor IDs of potentially suitable donors as well as information on their tissue type, blood group, gender, year of birth and results of infection tests. 
  • If a data subject included in the Stem Cell Registry is chosen as a donor, a summary of the results of their pre-donation medical examination is also shared with the relevant foreign stem cell registry. 
  • If a data subject is injured in connection with a donation, details of the event are shared with the insurance company.
  • The database of the Stem Cell Registry is managed by Steiner Ltd (www.steiner.cz).

Can my personal data be shared with parties outside of the EU?

  • The first sample that data subjects give upon joining the Stem Cell Registry and their donor ID are sent to a laboratory in the United States for tissue-typing.
  • Data subjects’ donor IDs and information about their tissue type, blood group, age and gender are uploaded to an international central data repository, which can also be accessed from countries outside of the EU.

How does the FRC Blood Service protect my personal data?

  • The first sample that data subjects give is always pseudonymised (identified by a sample number only and never by the donor’s name and/or personal identification number).
  • The samples are sent to be tested in a laboratory with which the FRC Blood Service has a written contract. The contract also includes provisions on data protection practices, such as non-disclosure obligations and procedures for sharing information and the appropriate disposal of samples and the erasure of results. 
  • As regards the information shared with the international central data repository, only the donor ID of potential donors is disclosed, never their name or personal identification number.
  • All individuals who process personal data are bound to secrecy.
  • The database is password-protected and can only be accessed by authorised members of staff. Only certain members of staff have the necessary account privileges to browse, enter, edit or delete data. The processing of data is restricted by our contracts with service providers. Hard copies of documents are kept in locked and access-controlled areas of FRC Blood Service’s premises and in locked filing cabinets. 
  • Regular information security audits and risk analyses are carried out ensure the security of the information held in the data file and the procedures used to process the data. The way in which the data are used and by whom is continuously monitored and any anomalies are investigated and documented.

Can my personal data be used for profiling or automated decision-making?

No.

For how long will my information stay on file?

All data subjects included in the Stem Cell Registry:

  • Data subjects’ information is kept for as long as they wish to be included in the Stem Cell Registry.
  • Any information that has been shared with the international central data repository (data subjects’ donor ID, tissue type, blood group, age and gender) may remain accessible even after a data subject has been removed from the Stem Cell Registry.

Data subjects who have previously donated stem cells:

  • Details about data subjects’ stem cell donations are kept for a period of 30 years.
  • Any information that has been shared with the international central data repository (data subjects’ tissue type, blood group, age and gender) may remain accessible even after a data subject has been removed from the Stem Cell Registry. The information will also appear in the medical records of the patient who received the transplant.

Due to the Stem Cell Registry’s involvement in a global network of stem cell registries, it is possible for information that has been shared with the international central data repository (data subjects’ tissue type, blood group, age and gender) to remain on file in other databases (such as in records of searches for suitable donors for a specific patient) even after a data subject has been removed from the Stem Cell Registry and the central data repository.

How can I check the information held about me and correct any mistakes?

There is a data request form on the FRC Blood Service’s website that you need to fill in, print out and sign and then bring or post to the FRC Blood Service. The FRC Blood Service will send you a printout of the information about you that the personal data file contains by post.

There is also a request for rectification form on the FRC Blood Service’s website that you can use to correct any mistakes that you find in your information. If only your contact details are incorrect, you can ask the FRC Blood Service to correct the information over the telephone.

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

Yes, you can, as long as you have not yet donated any stem cells. If you have made a stem cell donation since joining the Stem Cell Registry, the details about your donation must, by law, be kept for a period of 30 years.

Due to the Stem Cell Registry’s involvement in a global network of stem cell registries, it is possible for information that has been shared with the international central data repository (data subjects’ tissue type, blood group, age and gender) to remain on file in other databases (such as in records of searches for suitable donors for a specific patient) even after a data subject has been removed from the Stem Cell Registry and the central data repository.

Can I challenge the use of my personal data?

If you feel that your personal data are being used unlawfully, you can file a formal complaint with the competent supervisory authority.


Contact information
Finnish Red Cross, Blood Service
Kivihaantie 7
00310 HELSINKI
FINLAND
Tel. +358 29 300 1010, kantasolurekisteri@veripalvelu.fi
Manager of the personal data file:
Anne Arvola, Head of Stem Cell Services, tel. +358 29 300 1571
 
*) Finnish Act on the Medical Use of Human Organs and Tissues (101/2001)