We use the following terms below in our Framework for Research Ethics. Other glossaries may also be available from organisational research ethics committees (RECs) and learned societies.
Administrative data: information collected primarily for administrative (not research) purposes by government departments and other organisations for the purposes of registration, transaction and record keeping, usually during the delivery of a service.
Assent: apparent agreement from an individual who is judged to be not able to provide valid consent to take part in research.
Biobank (research tissue bank): a collection of human tissue or other biological material, often associated with personal data, which is stored for potential research use.
Biosocial research: the study of interdisciplinary interplay between biology, experiences and behaviours over the course of life. This encompasses multi-disciplinary science from the fields of biological, medical, life and social sciences.
Broad consent: broad consent operates when informed consent is not possible, as a means of consenting to a governance framework for future research of certain types (eg biobank research).
Controlled data: are data which may be identifiable and thus potentially disclosive but to which access may be granted to users who have been accredited and their data usage has been is approved by a relevant Data Access Committee. Data service providers may provide details of their policies regarding access to controlled data, for example the UK Data Service.
Data custodian (controller): is a person or persons, who determine(s) the purposes for which and manner in which any personal data are to be processed in line with the Data Protection Act 1998. The principal legal liability for breaches of the 1998 Act lies with these persons.
Data depositor or / producer: a data depositor or /data producer is an individual or organisation who is named on a licence as having sufficient responsibility to grant particular rights on behalf of a data collection. The depositor or /producer may be the principal investigator, creator or the copyright owner of a data collection, but does not have to be.
Elite interviews: these are interviews with people holding high office who may be chosen for inclusion in a research study because of the public role they hold in their own right (for example, government ministers), or because they might reasonably be assumed to represent views of their general position (for example judges, newspaper editors).
ESRC data service providers: organisations funded by ESRC to coordinate with data owners to provide access to data. These may be purchased, created or deposited for re-use (for example, the UK Data Service) or obtained and linked for specific approved projects (for example, the Administrative Data Research Network). ESRC data service providers may also provide user support, training and strategic data related advice.
Ethics protocols: accepted and approved procedures for addressing ethics issues in commonly occurring situations.
Expedited review: full ethics review that is conducted quickly and at short notice.
External member (of a REC): this person should have no affiliation to the research organisation ( RO) apart from membership of the REC and may provide the perspective of the research participant to the REC.
Freely-given informed consent: informed consent entails giving sufficient information about the research and support ensuring that there is no explicit or implicit coercion so that prospective participants can make a meaningful and free decision on their possible involvement.
Light-touch review: light-touch reviews identify those projects where the potential for risk of harm to participants and others affected by the proposed research is minimal or negligible.
Personal data: under the Data Protection Act 1998 ‘personal data’ is defined as data which relates to a living individual who can be identified either from those data, or from those data and other information which is in the possession of, or is likely to come into the possession of the data controller and includes any expression of opinion about the individual and any indication of the intentions of the data controller or any other person in respect of the individual.
Research: research is defined as any form of disciplined inquiry that aims to contribute to a body of knowledge or theory.
Research ethics: research ethics refers to the moral principles and practices guiding research, from its inception through to completion and publication of results and beyond – for example, the curation of data and physical samples, knowledge exchange and impact activities after the research has been published.
Research Ethics Committee (REC): a Research Ethics Committee is defined as an independent body appointed to review research involving participants to assess whether the proposed research is ethical.
Research lifecycle: includes the planning and research design stage, the period of funding for the project and all activities that relate to the project up to and including the time when funding has ended. The research lifecycle therefore also includes knowledge exchange and impact realisation activities, the dissemination process and the archiving, future use, sharing and linking of data.
Research participants: research participants are defined as including living human beings, human beings who have recently died (cadavers, human remains and body parts), embryos and foetuses, human tissue and bodily fluids, and human data and records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and test results including scholastic achievements).
Sensitive personal data: under the Data Protection Act 1998, sensitive personal data includes information about:
- the racial or ethnic origin of a person
- their political opinions
- their religious beliefs or other beliefs of a similar nature
- whether they are a member of a trade union
- their physical or mental health or condition
- their sexual life
- the commission or alleged commission by them of any offence, or
- any proceedings for any offence committed or alleged to have been committed by them, the disposal of such proceedings or the sentence of any court in such proceedings.
Transparency in research ethics: the full, accurate, and open disclosure of relevant information.
Valid consent: consent is valid if it meets three conditions: a participant has capacity to make a decision; the process is free from coercion; and the consent is informed.
Last updated: 17 August 2021