For participants

Janus Serum Bank contains information of when the blood sample was given, the amount of blood, and which collection the samples originated from. The serum bank is authorized to register health information that has been obtained through analyzes of the collected biological material. In order to identify cancer cases in the Janus serum bank for use in research projects, the information can be combined with health information in the Cancer Registry of Norway. The information may also be disclosed to other research projects within the purpose of the Janus Serum Bank. Processing and disclosure of biological material and health information follows established guidelines, and can only take place if the recipient has access to process the material or information, after the data subject's consent, after a decision on dispensation from the duty of confidentiality, or on other grounds in accordance with the rules on confidentiality and the EU's personal protection regulation articles 6 and 9. The cancer registry collaborates with researchers all over the world, and biological material and information from the serum bank can also be disclosed to other contries. If information is to be disclosed to countries outside the EU/EEA, the conditions in the EU's personal data protection regulation chapter V must be met. Researchers can only be provided with indirectly identifiable health information, i.e. health information where the name, national identification number and other personal characteristics have been removed, but where the information can still be linked to an individual, cf. the definition in the Personal Data Act (ACT-2018-06-15-38) § 2 letter f).

The Cancer Registry of Norway has implemented technical and organizational measures that ensure a security level that is suitable in relation to the risk, including access management, logging and subsequent control. National identification number and other direct personal identification characteristics are separated, and stored encrypted and separated from other register information. Cf. Article 32 of the EU's privacy regulation, section 21 of the Health Register Act and section 4-5 of the regulation on population-based health examinations.

Only authorized personnel who perform services or work for the Janus Serum Bank and work under the data controller's instructional authority can be given access to identifying personal data in the serum bank. Access cannot be more extensive than necessary for the person concerned's work.

Read more about:

• The Cancer Registry of Norway's information security
• The Cancer Registry of Norway's privacy
• The Norwegian Institute of Public Health data protection

As a donor to the Janus serum bank, you have the right to regular information about how your health information and biological material is used, cf. regulation on population-based health examinations § 2-5 third paragraph, cf. § 6-1 second paragraph.

Here you can find an overview of ongoing research projects that use biological material and/or health information from the Janus serum bank: Current research projects in the Janus serum bank

In addition to what appears above, you also have the right to information in accordance with the EU's personal data protection regulation articles 13 to 15 and the Health Register Act § 24, including the right to see who has had access to or has been given health information about you. The right of access applies with the limitations that follow from the Personal Data Act § 17 first paragraph (purposes related to scientific research or statistical purposes in accordance with the Personal Protection Regulation Article 89 no. 1 insofar as the rights are likely to make it impossible or to a serious extent prevent the goals of the processing be reached).

For information and access to information that may be registered about you in the Cancer Registry of Norway, you will find more information and procedures here.

If incorrect personal information about you has been registered in the Janus serum bank and/or in research projects, you can demand that the information be corrected without undue delay, cf. exceptions and limitations resulting from the Personal Data Act § 17 second paragraph (purposes related to scientific research or statistical purposes in accordance with the Personal Data Protection Regulation Article 89 No. 1 insofar as the rights are likely to make it impossible or to a serious extent prevent the goals of the processing from being achieved).

Exceptions have been made for the right to erasure according to the EU's personal protection regulation article 17 no. 3 letter c (consideration of the public interest in the area of ​​public health) and the right to data portability according to the EU's personal protection regulation article 20 no. 3 (necessary to carry out a task in the public interest) , cf. Section 25 of the Health Register Act.