Glossary of RRI Terms
A shared language is important for efficient communication. This Glossary is a collection of commonly used terms in Ethics, Data Governance and Data Protection.
Expertise from across the scientific spectrum is involved in the Human Brain Project. This Glossary was compiled by an interdisciplinary group of scientists and researchers within the Human Brain Project to help internal and external scientists interpret the documents we provide on the Human Brain Project and EBRAINS websites with greater ease. Any suggestions for improvements can be directed to Dr William Knight.
A
Anonymous Data (or Statistics)
Data which include information which cannot be used to identify an individual person.
C
Conflict of Interest
Condition where a subject is simultaneously involved in multiple interests, and pursuing one (e.g. personal interest) might be against the other (e.g. third party interest).
D
Data Controller
The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data.
Data Custodian
Party designated in the accompanying metadata of the Data Sets as the primary contact for each Data Set.
Data Governance
Data Governance (DG) is the overall management of the availability, usability, integrity and security of data used in an organisation. A sound data governance program ensures that data are consistent and trustworthy.
Data Processor
A natural or legal person, public authority, agency or any other body which processes personal data on behalf of the controller.
Data Providers
Refers to a person or group uploading data to EBRAINS services
Data Provision Protocol
The Data Provision protocol (DPP) is a guide for data providers on what requirements are expected for data uploaded to EBRAINS services, and the processes a data provider must follow.
Dataset
Digital data, either raw or derived, including but not limited to research and scientific data as well as metadata provided to the Platform by Contributors.
Dataset Identifier
A unique data identifier number created by the information system for each Data Set and to be included with each Data Set for the purpose of tracking and ongoing identification of the same
Data Use Agreement
The Data Use Agreement (DUA) is an agreement between a Data User and EBRAINS which details the restrictions and expectations on how the data user can use any data downloaded from an EBRAINS service.
Data User
Refers to the legal person (e.g. individual or organisation) that accesses and/or uses available datasets and models shared through EBRAINS.
Diversity
Diversity comprises the manifold traits, characteristics and differences of human subjects based on various dimensions. Some of these traits are inherent (e.g. sex, race , age), some are ascribed or acquired (e.g. skills, knowledge) and others are context related (e.g. social and economic background, lifestyle).
DPO
DPO stands for Data Protection officer. The DPO is a professional in the field of data protection and works with HBP Partners to facilitate compliance with the GDPR. The role of DPO includes consultation on data processing activities and providing advice and recommendations on compliance with applicable laws.
Dual Use
According to the EU, Dual Use items are normally used for civilian purposes but may have military applications, or may contribute to the proliferation of weapons of mass destruction. The HBP Ethics & Society Opinion on Responsible Dual Use uses the term ‘dual use of concern’ to refer to neuroscience research and technological innovation, and brain-inspired developments in information and communication technologies, for use in the political, security, intelligence and military domains, which are either directly of concern because of their potential for use that threaten the peace, health, safety, security and well-being of citizens, or are undertaken without responsible regard to such potential uses.
E
EARC - EBRAINS Access Review Committee
Refers to the committee coordinated by EBRAINS who reviews applications for access to EBRAINS services (including data submission, use of data and other resources/services).
EBRAINS AISBL
The legal entity (not-for-profit international association) responsible for exploiting the EBRAINS Research Infrastructure.
EBRAINS Resources
Refer to datasets, models and software available through EBRAINS.
EBRAINS User
Refers to the legal person (e.g. individual or organisation) that accesses and/uses EBRAINS resources (data, models and software) and services.
Equal Opportunities
The Cambridge dictionary defines equality as follows: “the right of different groups of people to have a similar social position and receive the same treatment”. Equal Opportunities correspond to the approach of equality, meaning that everyone should have the same chances and rights. This concept thus means to provide the same level of support to all persons and groups.
Ethics
Academic discipline that systematically reflects on principles, values and standards of correct behaviour. It basically covers discussion of right and wrong in order to facilitate moral decisions (i.e. disentangling good and bad).
Ethics Committee
A body responsible for ensuring that scientific research, especially involving human subjects and/or data), is compliant with national and international ethical regulation.
Ethics Compliance
Ethics Compliance refers to following ethics laws, requirements or policies.
Ethics Guidelines
A set of standards of conduct intended to guide decision-making and behaviour in specific contexts.
G
GDPR
EU General Data Protection Regulation is a piece of legislation which governs data protection issues across the EU.
H
Horizon 2020 Regulation
Regulation (EU) No 1291/2013 of the European Parliament and of the Council of 11 December 2013 establishing Horizon 2020 - the Framework Programme for Research and Innovation (2014-2020) and repealing Decision No 1982/2006/EC.
Human Data Subject
Regulation (EU) No 1291/2013 of the European Parliament and of the Council of 11 December 2013 establishing Horizon 2020 - the Framework Programme for Research and Innovation (2014-2020) and repealing Decision No 1982/2006/EC.
Human Dataset
Collection of related sets of information from human subject.
I
Incidental Findings
Incidental findings are previously undiagnosed medical or psychiatric conditions that are discovered unintentionally and during evaluation for a medical or psychiatric condition.
Informed Consent
This refers to permission granted by the research subject to researchers, based on full knowledge of the associated risks and benefits, to participate in research and for data relating to them to be processed.
Intersectionality
The concept of intersectionality, coined by Kimberlé Crenshaw, refers to the idea of multiple discrimination. It describes that different types of discrimination intersect with each other, meaning that several discriminations are not only added, but in a reciprocal relationship in which they reinforce or change each other.
M
Metadata
Data about data; describes features of Data or Datasets.
Misuse
Potential misuse of research results concerns research involving or generating materials, methods, technologies or knowledge that could be misused for unethical purposes. Although such research is usually carried out with benign intentions, it has the potential to harm humans, animals or the environment.
N
Neuroethics
Interface between the empirical brain sciences, philosophy of mind, moral philosophy, ethics, psychology, and the social sciences. Study of practical and conceptual questions that arise when scientific findings about the brain are carried into philosophical analyses, medical practice, legal interpretations, and health and social policy.
Non-Human Animal Dataset
Collection of related sets of information from non-human animal subjects.
P
Personal Data
Data relating to an identified or identifiable natural person.
Processing
Any operation or set of operations which is performed on personal data including data storage, pseudonymisation, data transfer, etc.
Pseudonymisation
Means the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person.
R
Research Ethics
Focuses on the ethical issues raised by research including considerations relevant in designing and carrying out scientific studies and in managing emerging data and results.
Responsible Research and Innovation (RRI)
Responsible research and innovation is an approach that anticipates and assesses potential implications and societal expectations with regard to research and innovation, with the aim to foster the design of inclusive and sustainable research and innovation.
Rights
Moral or legal entitlements, usually correlated with obligations.
S
Scientific Misconduct
Intentional, careless behaviour in scientific research that is unethical, illegal or both. Example: plagiarism, data falsification, non-compliance with research regulations
Scientific Research
Scientific Research is interpreted according to the GDPR in a broad manner including for example technological development and demonstration, fundamental research, applied research, privately funded research and studies conducted in the public interest in the area of public health.
Service Providers
Refers to the institution(s) providing EBRAINS services.
Service User
Refers to legal person (e.g. individual or organisation) that accesses and/or uses EBRAINS services (like software or computing services) that are not datasets.
Sex / Gender
Sex refers to the biological differentiation between “male” and “female”, determined by chromosomes, genes, hormones, and anatomy whereas gender refers to the social construction of women, men, and non-binary persons; i.e. societies and cultures associate competences, behaviours, and attitudes with a person’s biological sex.
Anyone can request to address ethical, regulatory and social issues raised by HBP research.
Register an Ethical ConcernEthics & Society Training Resources
We have developed training resources that cover a wide range of issues in data governance, responsible research and innovation, and neuroethics.
Our training modules provide tools and methods for foresight, as well as critical and philosophical reflection.
Introduction to Responsible Research & Innovation in HBP Human & Animal Data in EBRAINS Gender, Diversity & Inclusion Researcher Awareness & Integrity Dual Use of Concern & Misuse Knowledge Transfer & Commercialization Neuroethics, Consciousness & AI Ethics Foresight & Public Engagement Science CommunicationMore Ethics & RRI
The Human Brain Project will have an impact on both science and society.
We promote RRI practices within the HBP, and help to shape the direction of its research in ethically sound ways that serve the public interest.