Glossary of RRI terms
Expertise from across the scientific spectrum is involved in the Human Brain Project. Having a shared language is important for efficient communication. This Glossary is a collection of commonly used terms in Ethics, Data Governance and Data Protection 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 HBP and EBRAINS websites with greater ease. Any suggestions for improvements can be directed to Dr William Knight.
Data which includes information which cannot be used to identify an individual person.
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).
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.
Party designated in the accompanying metadata of the Data Sets as the primary contact for each Data Set.
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 is consistent and trustworthy.
A natural or legal person, public authority, agency or any other body which processes personal data on behalf of the controller.
Refers to a person or group uploading data to EBRAINS services
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.
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.
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
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.
Refers to the legal person (e.g. individual or organization) that accesses and/or uses available datasets and models shared through EBRAINS
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 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.
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.
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)
The legal entity (not-for-profit international association) responsible for exploiting the EBRAINS Research Infrastructure.
Refer to datasets, models and software available through EBRAINS
Refers to the legal person (e.g. individual or organization) that accesses and/uses EBRAINS resources (data, models and software) and services.
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.
academic discipline that systematically reflects on principles, values and standards of correct behavior. It basically covers discussion of right and wrong in order to facilitate moral decisions (i.e., disentangling good and bad).
body responsible for ensuring that scientific research, especially involving human subjects and/or data), is compliant with national and international ethical regulation.
Ethics Compliance refers to following ethics laws, requirements or policies.
set of standards of conduct intended to guide decision-making and behavior in specific contexts.
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
Refers to the identifiable natural person (study participant) whose data are used in research and are accessed through EBRAINS. Chapter 1, art 4 of the GDPR
Collection of related sets of information from human subject
Incidental findings are previously undiagnosed medical or psychiatric conditions that are discovered unintentionally and during evaluation for a medical or psychiatric condition.
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.
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.
Data about data; describes features of Data or Datasets.
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.
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.
Collection of related sets of information from non-human animal subjects
Data relating to an identified or identifiable natural person.
Any operation or set of operations which is performed on personal data including data storage, pseudonymisation, data transfer, etc.
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
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 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.
Moral or legal entitlements, usually correlated with obligations.
intentional, careless behaviour in scientific research that is unethical, illegal or both. Example: plagiarism, data falsification, non-compliance with research regulations
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
Refers to the institution(s) providing EBRAINS services
Refers to legal person (e.g. individual or organization) that accesses and/or uses EBRAINS services (like software or computing services) that are not datasets
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.
Register an Ethical Concern
Anyone can requests to address ethical, regulatory and social issues in Human Brain Project research. The POint of REgistration (PORE) is HBP’s mechanism to register and identify these issues and keep track of how they are dealt with.