4 November 2019
To understand withdrawing consent under the GDPR, it is essential to distinguish between consent to research and consent to data processing. For research involving human participants, consent is a foundational principle in both law and ethics that supports participant autonomy. In the context of data processing, and the GDPR specifically, consent is only one of several legal bases for the processing of personal data, including special-category data such as genomic and health-related data. That is, the data subject’s consent may not be the lawful basis under which data processing occurs. Nevertheless, seeking consent may remain an ethical requirement, even if it is not necessary for the purposes of data processing under the GDPR.
A corollary of free, informed, specific, and unambiguous consent to data processing is the right to withdraw consent at any time. The lawful basis chosen has particularly important consequences in the case of consent withdrawal. Where the data subject’s consent is the only lawful basis relied upon and communicated (in accordance with either Article 13 or Article 14), the data controller must stop processing such data upon receipt of a withdrawal and delete the personal data whose lawful basis for processing was the data subject’s consent.
Given the potential serious disruption to data processing activities, legal bases other than consent deserve consideration in the context of genomic and health-related research. Where personal data are processed under other lawful bases, there is no question of “withdrawing” consent to data processing as consent is not the lawful basis that justifies the processing. Accordingly, where a research participant withdraws their consent to participate in a research project, data processing may still continue under the GDPR so long as consent is not a lawful basis of processing for any data. In accordance both with research ethics and the GDPR’s principle of transparency, researchers should clearly describe to participants what effects their withdrawal of consent will have with regard to research participation and any future data processing. For example, withdrawing research consent may mean that no further data are collected but previously collected data will still be processed.
Even where consent is not a lawful basis on which a data controller relies, a data subject may still have other rights that affect data processing activities in similar ways to consent withdrawal. These include a right to erasure and a right to object. The right to erasure is not absolute: the data subject’s right to erasure will not apply in those circumstances where data are processed for research purposes with accompanying appropriate safeguards in accordance with Article 89(1) and erasure is likely to make impossible or seriously impair the research’s objectives. In regards to the right to object, when a data subject invokes their right to object, the data controller must stop the processing of the personal data at issue. To resume processing, the data controller must justify the further processing of the data. Possible justifications that are relevant to processing for research purposes include tasks in the public interest.
Relevant GDPR Provisions
Michael Beauvais works at the Centre of Genomics and Policy at McGill University in Montreal, Quebec, Canada.
For a list of previous briefs, please consult here.
Please note that GDPR Briefs neither constitute nor should be relied upon as legal advice. Briefs represent a consensus position among Forum Members regarding the current understanding of the GDPR and its implications for genomic and health-related research. As such, they are no substitute for legal advice from a licensed practitioner in your jurisdiction.