Right to withdraw consent from biobank research – A weak right wrapped in empty promises?

The right to withdraw consent from research is a well-established right of research participants. This paper examines what it means to withdraw consent from biobank research in the European Union (EU) and the European Economic Area (EEA) – where biobank data is regulated by the General Data Protection Regulation (GDPR) – and how the implications of consent withdrawal are communicated to potential sample donors. An analysis of two biobank consent documents, one from Finland and one from Germany, indicates that donors are informed of the right to withdraw but receive potentially misleading information about its consequences. In particular, the documents do not clarify that withdrawal may not prevent further use of data, overstating the right’s practical effect. This communicative strategy risks undermining informed consent and may erode trust in biobanks as research institutions if sample donors come to feel that they have been deceived. To address this issue, it is recommended that biobanks provide clear and accurate information about the legal impact of consent withdrawal on associated data.