Data protection and rights of the donor

Protecting the rights and identity of the donor is one the key objectives of the Biobank Act and forms the basis for all biobank activities.

To protect the identity of the donor, all samples and data are stored by the research code, and researchers are handling the samples and data without personal identifiers. When samples and data are released for research, the biobank will agree in writing with the researcher on the conditions of release and on the secure handling of the samples and data.

Personal identifiers and the coded information about the stored samples and data are stored separately, and the link between these two is stored in the so-called code register. Access to the code register is strictly limited, and only a few designated members from personnel of the biobank can access the register. Registry must exist that the code can be turned into donor identity in cases the donor wants to withdraw the consent, or when registers are combined with other register information.  Also access to the sample repositories is strictly controlled.

Read more about legal framework of biobanking

Biobank Act obligates biobanks to take care of donors' rights

Upon written request, the sample donor has a right to know:

• if his/her samples and data have been stored in THL Biobank, and the basis for the storage
• from where his/her samples and data has been obtained from
• in which studies his/her samples and data has been used
• the information related to his/her health, determined from his/her samples in biobank research studies, and explanation of the significance of the results. A fee may be charged for providing the information, up to a maximum of the cost of providing the reply.

How to implement your rights?

You can find information of all research projects currently stored in THL Biobank from our webpages. If you have participated in any of the listed studies, it is possible that also your samples have been stored into THL Biobank.
Research collections stored in THL Biobank

Under the Biobanks Act, everyone has the right to know, on request, whether samples and data concerning them are stored in a biobank. If you want to find out whether your samples and data are stored in THL Biobank, you can ask using the enquiry form. This enquiry is free of charge.