Glossary

Blockchain
Using cryptography to keep exchanges secure, blockchain provides a decentralized database, or “digital ledger”, of transactions that everyone on the network can see. This network is essentially a chain of computers that must all approve an exchange before it can be verified and recorded.
Initial citation from Informed Consent Monthly Review

Bolam Test
A test that arose from English tort law, which is used to assess medical negligence. Bolam holds that the law imposes a duty of care between a doctor and his patient, but the standard of that care is a matter of medical judgement.
Initial citation from Informed Consent Monthly Review

Cultural and Linguistic Diversity (CALD)
Cultural and linguistic diversity (CALD) refers to the range of different cultures and language groups represented in a population. In popular usage, CALD communities are those whose members identify as having non-mainstream cultural or linguistic affiliations by virtue of their place of birth, ancestry or ethnic origin, religion, preferred language or language spoken at home.
Editor’s Note: This term is often referenced in an Australian context.
Initial citation from Informed Consent Monthly Review

Deemed Consent
Informed consent obtained after a specific intervention which it references, termed deferred consent or retrospective consent.
Initial citation from Informed Consent Monthly Review

Deferred Consent
A person who has neither opted in nor opted out is deemed to have consented. Often used in national programs such as organ donation.
Initial citation from Informed Consent Monthly Review

Dynamic Consent
Term used to describe personalised online consent and communication platforms. Such platforms are primarily designed to achieve two objectives: 1) facilitate the consent process and 2) facilitate two-way, ongoing communication between researchers and research participants.
Initial citation from Informed Consent Monthly Review

eConsent
Electronic informed consent (eConsent) provides the same information, but in an electronic format that may include multimedia components such as images, audio, video, diagrams, reports, call out boxes and a digital signature which may aid the consenting process.
Initial citation from Informed Consent Monthly Review

Exception from Informed Consent (EFIC)
A pathway that allows investigators to enroll patients without consent from the patient, their family, or their legally authorized representatives.
Initial citation from Informed Consent Monthly Review

Free, Prior and Informed Consent (FPIC)
The standard FPIC, as well as Indigenous Peoples’ rights to lands, territories and natural resources are embedded within the universal right to self-determination. The normative framework for FPIC consists of a series of international legal instruments including the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), the International Labour Organization Convention 169 (ILO 169), and the Convention on Biological Diversity (CBD), among many others, as well as national laws… FPIC is a specific right that pertains to Indigenous Peoples and is recognized in the UNDRIP. It allows them to give or withhold consent to a project that may affect them or their territories. Once they have given their consent, they can withdraw it at any stage. Furthermore, FPIC enables them to negotiate the conditions under which the project will be designed, implemented, monitored and evaluated.
Editor’s Note: We see this term of art as potentially contributing more widely because of its clarification of what IC might mean.
Initial citation from Informed Consent Monthly Review

Learning Health System (LHS)
A Learning Healthcare System is defined… as a system in which, “science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience.”
Initial citation from Informed Consent Monthly Review

Presumed Consent
The idea that someone is believed to have given permission for something unless they say they do not, used, for example, in some countries for organ donation.
Initial citation from Informed Consent Monthly Review

Strategic Initiative for Developing Capacity in Ethical Review (SIDCER)
The Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) is a network of independently established regional fora for ethical review committees, health researchers and invited partner organizations. The primary objective of SIDCER is to contribute to human subject protections globally by developing local capacity for ethical review of research involving human subjects and for developing policies on the ethics of health research.
Initial citation from Informed Consent Monthly Review