Cord Blood Bank's Privacy Statement

Why is my data being collected?

Cord blood transplants can be used to treat life-threatening blood diseases in patients who need a stem cell transplant. In Finland, cord blood transplants were collected in the Cord Blood Bank for fluid nitrogen storage from 1998 to 2013. Cord blood was collected after delivery and after cutting the umbilical cord, always with the written consent of the mother. After collection, the products were tissue-typed, and the tissue typing information can be used to find the most suitable stem cell donor for the patient in need of a stem cell transplant. As the use of cord blood transplants has declined with the development of other stem cell transplantation therapies, their collection in Finland was discontinued more than ten years ago, but previously collected transplants are still available for patients in need.

What data is collected on me?

Transplant cell count, tissue type, blood group, gender, date of birth, maternal infection test results and information about the birth.

How is my data obtained?

Laboratory results from the transplant and maternal blood samples, as well as information provided by the mother herself.

For what purposes are my personal data used?

Tissue type, blood group, gender and cell count data are used to find the most suitable transplant for the patient. Prenatal and maternal infection test data are used to ensure the safety of the transplant.  If a transplant is used to treat a patient, the Cord Blood Bank has a legal ¹⁾ obligation to retain donor and recipient personal data to ensure the traceability of transplants.

¹⁾ Act on the Medical Use of Human Organs, Tissues and Cells (101/2001)

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

A unique ID is assigned to the cord blood transplant when it is stored in the Cord Blood Bank. This ID, along with tissue type, cell count, gender, age and blood group information, is uploaded to a central international registry from which both the Stem Cell Registry and other international registries can search for a suitable transplant for a patient in need of a stem cell transplantation. For cord blood transplants submitted for a patient, information on infection test results and health risk questionnaire will also be provided. Once the cord blood transplant has been delivered and given to the patient, all information is deleted from the central registry.

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

This information will also appear in the central international registry outside the EU, and cord blood transplants can be used to treat patients outside the EU.

How does the FRC Blood Service protect my personal data?

A separate identifier, a pseudonym, is always given to the transplant and the samples associated with it, and these IDs are used when they are handled. No personal data of the mother or child will ever be passed on. The staff of the Cord Blood Bank are bound by confidentiality and access to the register is restricted by usernames and only to those who need the information for their work. Access to the register and the addition, modification and deletion of data are limited by access rights. Access to data is limited by our contract with service providers.

Paper documents containing data are stored in locked, access-controlled rooms and locked cabinets at the Blood Service.

Register data and its use are part of regular security audits and risk analyses. There is an ongoing access data monitoring tool, and reporting and investigation of incidents.

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

No.

How long is my information kept?

If the transplant has not been used to treat the patient, the data is stored in the Cord Blood Bank for the same length of time as the transplant itself.  If the transplant has been used to treat a patient, the data are kept for at least 30 years after the transplantation and up to 120 years after the birth of the recipient (patient) of the stem cell transplant. ²⁾

²⁾ Act on the Status and Rights of Patients (17.8.1992/785) and Decree of the Ministry of Social Affairs and Health on medical records (94/2022)

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

Fill in, print and sign the information request form found on the Blood Service website and submit it to the Blood Service by post or in person. The Blood Service will send an extract of your personal data in the registry to you by post. You may request for rectification of inaccurate information in writing using the rectification request form available on the Blood Service website. You can also correct contact details by phone.

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

Yes, if the cord blood transplant has not already been used to treat the patient. Due to the registry’s involvement in a global network of stem cell registries, it is possible that information (tissue type, cell count, blood group, age and gender) shared with the central registry may still remain on file in other registries (e.g. in patient donor search data) even after it has been removed from the Stem Cell Registry and from the central registry.

Can I challenge the use of my personal data?

If you believe that the law has been infringed in the processing of your personal data, you can lodge a complaint with the supervisory authority.

Contact information

The Finnish Red Cross Blood Service
PO Box 2, FI-01731 Vantaa, Finland
Tel. +358 29 300 1010, kantasolurekisteri(at)veripalvelu.fi

Person responsible for the registry

Taina Jaatinen, Head of Stem Cell Registry, tel. +358 29 300 1628