Dynamic consent

Worked examples

Is an instance

A national biobank deploys a participant portal allowing each member to opt in or out of each new study proposal that uses their samples and to update contact preferences in real time.

Is an instance

A rare-disease registry uses dynamic consent so that paediatric participants can re-consent themselves upon reaching the age of majority.

Looks similar, but isn't

Not an instance

A static online consent form completed once at enrolment with no mechanism to revisit or modify preferences is not dynamic consent.

Not an instance

An email distribution list that merely informs participants of new studies without offering granular preference controls does not meet the dynamic-consent standard.

Dynamic consent operationalises the principle that consent is an ongoing relationship by providing participants with a personal interface (typically web or mobile) on which they can view current and proposed uses of their data, set granular preferences (for example, opt in to commercial use but out of overseas transfer), and update those choices at any time. The model is most commonly deployed in biobanks, rare-disease registries, and large population cohorts where future research uses cannot be fully enumerated at enrolment. The institution must ensure that withdrawals are propagated to downstream users, that the audit trail of preference changes is preserved, and that any required regulatory consent elements remain satisfied at each change.

References

EU Horizon 2020 Dynamic Consent Project deliverables and EnCoRe Project reports
UK Biobank participant resource consent guidance
BBMRI-ERIC Common Service ELSI position papers on dynamic consent

Use in your systems

JATS XML <role> element

xml

<role vocab="credit"
      vocab-identifier="https://casrai.org/dictionary/"
      vocab-term="Dynamic consent"
      vocab-term-identifier="https://casrai.org/dictionary/term/dynamic-consent" />

Schema.org DefinedTerm (JSON-LD)

json

{
  "@context": "https://schema.org",
  "@type": "DefinedTerm",
  "name": "Dynamic consent",
  "identifier": "https://casrai.org/dictionary/term/dynamic-consent",
  "description": "A consent model implemented via a secure digital platform that enables participants to grant, modify, or withdraw consent for specific research uses over time and to receive ongoing communication about studies that use their data or samples.",
  "inDefinedTermSet": "https://casrai.org/dictionary/domain/compliance-and-regulatory/",
  "url": "https://casrai.org/dictionary/term/dynamic-consent",
  "sameAs": [
    "interactive consent",
    "electronic re-consent platform"
  ],
  "license": "https://creativecommons.org/licenses/by/4.0/"
}