Poster 24: Bør norske pasienter kunne gi et bredt samtykke til all medisinsk forskning?

An opening up of informed consent to include all medical research could facilitate a better utilization of valuable biological material and data from Norwegian patients for research purposes.

Background: Biological samples (e.g., blood or saliva samples) and health information that are collected from patients receiving medical treatment are valuable resources for public health research. Today, Norwegian patients can consent to the use of their samples and data within broadly defined research purposes such as research on cancer or diabetes. Consenting to such use for medical research, in general, is currently not supported by the Health Research Act. However, an opening up of informed consent to include all medical research would facilitate better utilization of valuable material and data and save patients from many inquiries about new consents. Rather than asking patients for active consent, one could also apply passive consent, where patients are only informed about research uses and have the possibility to opt-out. A recent Norwegian study showed that patients supported the secondary use of their data and samples for research (Eikemo et al., 2022), 42% preferred passive consent whereas 46% did not think it necessary to receive any information at all. This study explores the perspectives of patient representatives regarding a possible extension of consent requirements to include all medical research and a potential upheaval of consent.

Methods: During the spring of 2023, an anonymous web-based survey will be sent to the leaders and members of user committees at all the country's healthcare institutions. The survey will include approx. 15 multiple-choice and open-ended questions to investigate their views regarding a possible change in the consent requirement to a broader consent for medical research in general, motivations for consenting or not consenting to research uses, and the type of information they would need. The data collection will end in June 2023.

Results: Preliminary results are expected to be available in September 2023.

Conclusions: If our results corroborate findings from other studies, this may indicate that policymakers should consider a revision of the current Health Research Act to open for the implementation of more general informed consent to medical research.