Glossary

Introduction to Research Ethics: Working with People

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A
Applied Ethics

• A branch of ethics devoted to the treatment of moral problems, practices, and policies in
personal life, professions, technology, and government.

Anonymising Data

• The practice of removing personal identifiers from a set of data so that anyone reading the
data is not able to identify any of the people who have taken part in the study.

Academic Misconduct

• Any action or attempted action that may result in creating an unfair academic advantage for
oneself or an unfair academic advantage or disadvantage for any other member or members of
the academic community. This includes a wide variety of behaviors such as cheating, plagiarism
or altering academic documents or transcripts.

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B
Belmont Report

• A report which summarises the ethical principles and guidelines for researching involving
human subjects.

Breaching Confidentiality

• When data or information provided in confidence by a participant is disclosed to a third party

without your participant’s consent.
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C
Concentration Camp

• A place in which large numbers of people, especially political prisoners or members of

persecuted minorities, are deliberately imprisoned in a relatively small area with inadequate
facilities, sometimes to provide forced labour or to await mass execution.

Consent

• The permission for something to happen or an agreement to do something. In the case of

research, consent means the participant giving permission for the researchers to conduct
research on them.

Control Measures

• Actions and/or activities that are taken to prevent, eliminate or reduce the occurrence of a
hazard that you have identified.

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D
Declaration of Helsinki

• A statement of ethical principles by the World Medical Association to provide guidance to

physicians and other participants in medical research involving human subjects.

Disclosure and Barring Service (DBS)

• A non-departmental public body of the Home Office of the United Kingdom. The DBS enables
organisations in the public, private and voluntary sectors to make safer recruitment decisions
by identifying candidates who may be unsuitable for certain work, especially that involving
children or vulnerable adults.

Dependant Relationship

• Any unequal relationship in which one person has more power or control and the other depends
on them in some way. Parent-child relationships are an obvious example, as the child depends
on the parent to look after and support them.

Dataset

• A collection of discrete items of related data that may be accessed individually or in

combination or managed as a whole entity.
Data Controller

• A person who determines the purposes and the manner in which any personal data is to be
processed.

Data Protection Act (DPA) 1998

• An act of the United Kingdom (UK) Parliament defining the ways in which information about
living people may be legally used and handled.

Data Protection

• The process of safeguarding important information from corruption, compromise or loss.

Data Lifecycle

• The sequence of stages that data goes through from its initial generation or capture to its
eventual archival and/or deletion at the end of its useful life.

Data Retention Policy

• An organisation’s established protocol for retaining information for operational or regulatory

compliance needs.

Data Handling

• The process of ensuring that research data is stored, archived or disposed off in a safe and
secure manner during and after the conclusion of a research project.

Direct Identifiers

• Pieces of data which are unique to an individual and therefore can be used to directly identify
that individual from a set of data.

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E
Ethics

• A system of moral principles which defines what is good for individuals and society.

Extortion

• The crime of obtaining something from someone, especially money, by using force or threats.

European Economic Area

• Includes EU countries and also Iceland, Liechtenstein and Norway. It allows them to be part of
the EU’s single market.
Encryption

• The process of converting data to an unrecognisable or “encrypted” form.

Evernote

• A web-based app that allows end users to capture, store and synchronise text, image and video
files across multiple computing devices.

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F
Freshmen

• A student in the first year of high school, college, or university.

Focus Group

• A form of qualitative research consisting of interviews in which a group of people are asked
about their perceptions, opinions, beliefs, and attitudes towards a subject.

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G
General Data Protection Regulation (GPDR)

• A legal framework that sets guidelines for the collection and processing of personal information
of individuals within the European Union (EU).

GIC (the)

• General Insurance Commission.

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H
Hippocratic Oath

• A promise made by people when they become doctors to do everything possible to help their
patients and to have high moral standards in their work.

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I
Immoral

• Something which doesn’t conform to accepted moral standards.

Incentive

• Something that motivates or encourages someone to do something.

Informed Consent

• Consent provided by someone who has the full knowledge of the possible consequences, risks
and benefits and agrees to participate in the research.

Institutional Damage

• Unintended consequences to an individual resulting from interaction with an institution which

has responsibility for their care.

Indirect Identifiers

• Pieces of data which are not unique to any individual and therefore do not allow the
identification of individuals from this data alone.

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L
Legal Guardian

• Someone who who has the legal authority (and the corresponding duty) to care for the personal
and property interests of another person.

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M
Market Research

• The systematic gathering of data about people or companies – a market – and then analysing it
to better understand what that group of people needs.
Mental Capacity Act 2005

• An Act of the Parliament of the United Kingdom applying to England and Wales. Its primary
purpose is to provide a legal framework for acting and making decisions on behalf of adults who
lack the capacity to make particular decisions for themselves.

Methodological

• A set of methods used in a particular area of study or activity.

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N
Nuremberg Code

• A set of research ethics principles for human experimentation set as a result of the subsequent
Nuremberg trials at the end of the Second World War.

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O
Office for Human Research Protections

• The agency responsible for developing, monitoring and exercising compliance over the
protections afforded human subjects in all research supported by the US Department of Health
and Human Services (DHHS).

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P
Projects (the)

• Public housing or project homes where the property is owned by a government authority, which
may be central or local.

Proxy Consent

• The process by which people with the legal right to consent to medical treatment for
themselves or for a minor delegate that right to another person.

Plagiarism

• The practice of taking someone else’s work or ideas and passing them off as one’s own.

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R
Research Ethics Committee

• A body who review research applications and give an opinion about whether the research is
ethical.

Right to Withdraw

• A concept in research ethics that a participant in a research study has a right to end
participation in that study at any time they want.

Right to be Forgotten

• The concept that individuals have the civil right to request that personal information be
removed from the Internet.

Risk Assessment

• A careful examination of what, in your work, could cause harm to people, so that you can weigh
up whether you are taking reasonable steps to prevent that harm.
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S
Syphilis

• A sexually transmitted infection caused by the spirochaetal bacterium Treponema pallidum.

Safeguarding

• The action that is taken to protect vulnerable adults or children from abuse or neglect.

Sensitive Data

• Information concerning a data subject’s racial or ethnic origin, political opinions, religious
beliefs, trade union activities, physical or mental health, sexual life, or details of criminal
offences.

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U
US Public Health Service

• A part of the Department of Health and Human Services (HHS) that is responsible for the public
health of the US population.
UK Health and Safety Executive

• The body responsible for the encouragement, regulation and enforcement of workplace health,
safety and welfare, and for research into occupational risks in Great Britain.

UK Data Protection Bill 2018

• A United Kingdom Act of Parliament that updates data protection laws in the UK. It is a
national law which complements the European Union’s General Data Protection Regulation
(GDPR).

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V
Vulnerable Participants

• Any individual who lacks the ability to fully consent to participate in a study.

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W
World Medical Association

• An international and independent confederation of free professional medical associations,

therefore representing physicians worldwide.

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