Dynamic consent

Dynamic consent is a consent model implemented through a secure digital platform — typically a participant-facing portal — that lets research participants grant, modify, or withdraw permission for specific research uses of their data or samples over time, rather than giving a single, fixed consent decision at enrolment. Participants can review new study proposals, adjust their preferences, and receive ongoing communication about how their contribution is being used throughout the life of a study or biobank collection.

Origin and rationale

The dynamic consent concept was articulated in bioethics and research-governance literature (notably Kaye et al., “Dynamic consent: a patient interface for twenty-first century research networks,” European Journal of Human Genetics, 2015) as a response to the limits of a single point-in-time consent decision for long-running biobanks and data resources whose future uses cannot all be anticipated at enrolment. Rather than asking a participant to consent broadly, once, to uses that do not yet exist, dynamic consent gives participants an ongoing mechanism to make that decision study-by-study as new proposals arise.

How it differs from broad and static consent

A static online consent form completed once at enrolment, with no mechanism to revisit or modify preferences afterward, does not meet the dynamic-consent standard, regardless of how the form itself was administered. Broad consent sits between static and dynamic models: it permits a wide, but not unlimited, range of future unspecified research uses agreed to at one time, without the granular, revisitable, per-study control dynamic consent provides. An email distribution list that merely informs participants of new studies, without offering a mechanism to grant or decline participation for each one individually, likewise falls short of dynamic consent — notification alone is not the same as ongoing, granular control.

Where it is used

Dynamic consent platforms are most established in national and disease-specific biobanks and longitudinal cohort studies, where the volume and unpredictability of future research uses make a single upfront consent decision impractical to defend ethically over the resource’s lifetime. Implementations range from purpose-built participant portals run by a single biobank to shared platforms (such as the CTRL infrastructure originating from work following the EnCoRe project) intended for reuse across multiple studies. Paediatric cohorts are a notable use case: dynamic consent lets a participant enrolled as a minor re-consent themselves directly upon reaching the age of majority, rather than relying on a parent or guardian’s original decision indefinitely.

Relationship to other consent and governance frameworks

Dynamic consent addresses individual participant control over data and sample use; it is a distinct mechanism from Free, Prior and Informed Consent (FPIC), which addresses collective, community-level consent in research involving Indigenous Peoples’ knowledge, lands, or data and is sought from a community or its representative body rather than (only) from individual participants. A study can use dynamic consent for individual participant preferences and separately need FPIC where it engages Indigenous communities — the two are complementary, not interchangeable. See also Withdrawal of consent for the specific mechanics of revoking permission once granted.

References

• Kaye, J. et al., “Dynamic consent: a patient interface for twenty-first century research networks,” European Journal of Human Genetics, 23, 141–146 (2015).