Glossary

This glossary is chiefly dealing with terms related to ethics of (engineering) research, for a glossary devoted to privacy and data protection, please refer to the EUROPEAN DATA PROTECTION SUPERVISOR GDPR GLOSSARY

Act: voluntary intervention on reality either as resulting from rational deliberation or from emotional reaction.

Accountability: obligation or willingness to accept responsibility or to account for one's actions.

Access Management: authentication of an identity that requires access to a particular resource, access decisions are simply yes/no. It may be a layered process, with access services determining whether a user is authorised to a given network access, and lower access levels authenticating whether the identity in question should have access to specific servers, drives, folders, files, and applications. Authentication is not the same as authorisation. Although an identity (user) may be authorised to log in, this does not automatically grant it access to all applications. Authorisation for a given application or resource will be determined by the attributes of the identity, such as the group(s) to which it belongs, its level in the organisation or a previously assigned specific role.

Anonymisation: in order for data to be anonymised under the GDPR there must be no means of identifying any individuals. If, at any point, it could be possible to use any reasonably available means to re-identify individuals, the data is in fact pseudonymised rather than anonymised.

Applied ethics: subdiscipline of ethics which implies an intervention on reality. It is a conceptual model that provides a structure for decision making in response to a conflict of values or a new situation occurring in a specific context.

Assent: a term used to express willingness to participate in research by minors (children under 18) who are by default assumed to be too young to give informed consent, but who are old enough to understand the proposed research in general, its expected risks and possible benefits, and the activities expected of them as participants. Failure to object by a child should not, in the absence of affirmative agreement, be construed as assent. Good assent practice is about the process of involving children and young people in meaningful decisions about research. The assent process should involve taking the time to explain to a minor, at whatever age they can begin to understand, what the proposed study entails, why the research is being carried out, what this involves for them, and that if they object, they do not need to continue to be involved. It is common to secure assent of a minor and the permission of the parent/carer(s), in place of consent. If a parent/carer grants permission, but the minor does not give assent, then the minor must not take part in the research. In devising assent processes, researchers should primarily be concerned with how best to develop trusting relationships with children and communicate information appropriately throughout the research.

Attribute (identity): information about users which allows to identify them; identity attributes for people are things like name, address, date-of-birth, fingerprints, and so on.

Autonomy: the ability to decide for oneself what to think and do. It implies the responsibility to take the consequences of one's decisions.

Beneficence: the quality or state of doing or producing good.

Capacitated/Non-Capacitated People: to be legally competent or incompetent. It implies the ability to perform acts of disposition of oneself and one's assets that are endowed with legal value. By default, all subjects of legal age are considered competent unless they have been declared incompetent by a court. The notion of legal capacity should not be confused with the concept of competence used in ethics (e.g. in informed consent) which is broader and also covers subjects who have not been declared legally incompetent.

Carer: someone who has primary responsibility for the day-to-day welfare of people with a health condition: not someone who is contracted to provide personal services for another person. The carer may or may not be related to the people with health condition in their care.

Children: legally all those under eighteen years of age are minors. Children are people whose ability to give free and informed consent is in question. To determine who should consent to the participation of a child in any particular piece of research, the competence of the child must be weighed against the risk the research poses for the child. The competence of the child to consent to participate in research depends on both the complexity of the particular project and the maturity of the child. If researchers are collecting the personal data of children under 18 and/or wish to disclose these data to third parties they will need the explicit and verifiable consent of the child’s parent or guardian and the child’s assent to do so. The child’s lack of assent will always overrule the parent’s or guardian’s consent. Where children are judged incompetent to consent to participation in any particular research, it is good practice to ask them their view on whether they want to participate. This view should be sought in advance and respected (see Competence -Gillick). Even if appropriate consent has been secured the researcher must stop research immediately if it causes distress to the child and must exclude the child permanently from the research if the distress continues.

Clinical: any action performed within a therapeutic context between a professional career and a person requiring physical or psychological care.

Code of Ethics: an instrument developed by a professional group to provide guidance and guidelines on what is and is not acceptable in the professional conduct.

Competence: a proven ability to use knowledge, skills and personal, social, and methodological abilities in work or study and in professional and/or personal development; competence is usually described in terms of responsibility and autonomy. In a strictly legal sense, competence expresses the ability and authority to deal with, judge, settle certain matters such as donating, making a will, refusing a medical treatment, signing a contract, and so on.

Competence (Gillick ): Gillick competence refers to a legal case in England (Gillick v West Norfolk and Wisbech Area Health Authority, 1985) which determined whether doctors should be able to give contraceptive advice or treatment to under 16-year-olds without parental consent. The term has since been more widely used to help assess whether a child has the maturity to make their own decisions and to understand the implications of those decisions

Competent (Participants): human participants who are able to give informed consent to their own participation in research. A competent participant must be able to (a) understand the nature and effects of the decision; (b) weigh up the information provided and come to a decision about it; (c) communicate the decision.

Confidentiality: the privacy attaching to certain information, including personal data.

Conflict of interest (COI): this arises when a researcher's professional actions may be influenced by considerations of personal gain beyond that simply accruing from successful research in general. COI may be perceived, rather than actual. Gain may be financial or it may be non-monetary, such as political self-advancement. Gain may accrue to the researchers themselves or to their close family or associates. Conflicts of interest may arise through the existence of unequal relationships. Where personal interests could directly and significantly affect, or perceived as affecting, the design, conduct, or reporting of the research, they must be disclosed.

Consent form: a paper form that competent human participants sign and date to give their informed consent to participate in research, or which competent adults sign to record their consent to the participation in research of a third party (child or person with a mental health or neurological condition) for whom they have responsibility. The form must be signed and dated by the researcher who explained the project to the participant. The use of a consent form may be sometimes impossible (for example where participants are illiterate) or impracticable (for example when participants are asked to complete a brief survey in the street) or may itself raise ethical questions (for example in cultures where giving a signature is a matter of great moment and insistence on it may put unacceptable pressure on participants). Where participants are being invited to take part in web based questionnaire the questionnaire should clearly explain that by completing it the participant declares his/her understanding of the project and consent to participate in it.

Consequence: results of a word, an action, real or possible, that will be experienced by others. A positive or negative value is attributed to consequences based on the effects on others.

Context: the place and circumstances that influence and explain a fact, a situation.

Deception: giving false information or deliberately misleading participants. Incomplete disclosure is a type of deception that involves withholding some information about the research aims or process. Deception or covert collection of data should only take place where it is essential to achieve the research results required, where the research objective has strong scientific merit, and where there is an appropriate risk management and harm alleviation strategy.

Decision: an intellectual and emotional point taken after consideration of conflicting alternatives. If the alternatives imply values, one speaks of ethical decision.

Deontology: etymologically speaking, deontology refers to the "science of duties", i.e., the reflection on the norms imposed on oneself. In the contemporary context, deontology concerns the norms that regulate professional action within each professional practice.

Digital Unconscious: the huge amount of personal information unwarily shared on the web; the concealed digital persona created by individuals, enterprises, governments, and machines, which is rapidly becoming the backbone of our education, scientific research, economic ecosystem, government administration and our critical infrastructures.

Dignity: the word “dignity” comes from the Latin Dignitatis meaning one's position in society, say, someone’s social rank and value. With the Renaissance, the term has been increasingly used to indicate the rank and value of humans in relation to other natural items. These rank and value were supposed to be the highest because – as it went the argument – human beings were the most marvellous piece of nature. Finally, from the eighteenth century on, human dignity means that every human being is unique, and thus priceless, and s/he participates in the dignity of the whole human species. Each human being must be respected because of his/her irreplaceability. Dignity, thus, provides the actual foundation of the individual, understood as the holder of a unique personal identity.

Discrimination (Direct): direct discrimination occurs when a person is treated less favourably because of his or her membership of a different race, ethnicity, religion, sexual orientation, and so. In such cases, the criterion from which the disadvantageous treatment originates indicates explicitly or in any case unequivocally, the discriminatory risk factor (e.g., a rental advertisement that in principle excludes renting to foreign nationals constitutes direct discrimination).

Discrimination (Indirect): indirect discrimination occurs when the differentiation that causes prejudice is a consequence of the application of criteria that are formally 'neutral' but objectively disadvantage or discriminate against a certain category of persons characterised by the same racial, ethnic, national, etc. affiliation. In these cases, discrimination manifests itself in a more covert manner as it considers apparently 'neutral' factors, without referring directly to those of discriminatory risk (e.g., a shop forbids shop assistants to wear headgear while working. This behaviour indirectly discriminates against those who habitually wear headgear for reasons of religious belief, for instance the headscarf for Muslim women or the Jewish kippah).

Discrimination (Digital): the “systematically and unfairly discriminate against certain individuals or groups of individuals in favor of others. A system discriminates unfairly if it denies an opportunity or a good or if it assigns an undesirable outcome to an individual or group of individuals on grounds that are unreasonable or inappropriate” (Friedman & Nissenbaum, 1996). Digital discrimination is also described as “harms of representation” meaning biases in representing different groups or identities, so reinforcing stereotypes and stigma (Crawford, 2017). Digital discrimination can be both direct and indirect. Direct digital discrimination occurs when a person is treated less favourably for reasons related on the grounds mentioned above (e.g., a social media which prevents the registration of people claiming to be of a certain gender or religion). Indirect digital discrimination often is evoked in the case of algorithms, as it may be difficult to prove the less favourable treatment of an individual or group based on sex, racial or ethnic origin, religion or belief, disability, age, or sexual orientation.

Duty: what one is obliged to do, or also what it is appropriate to do. The binding nature of a give duty depends on its source. The sources of duty are multiple and vary according to the situation: laws, cultural customs, ethical principles, religious obligations, norms of a professional activity, specific operational guidelines, and so on.

e-health: “the use of information and communication technologies for health” (World Health Organisation, 2006); e-health includes three main areas, (1) telemedicine for the purpose of remote consulting and possibly even the carrying out of examinations or procedures, enabling medical staff to ‘interact’ with patients without having to be physically close to them; (2) monitoring, wherein carers might be able to keep an eye on patients from a distance; (3) managing organisational elements of medical care; administrative procedures, medical records and communications both amongst professionals and between patients and their caregivers.

e-learning: the way in which web technology designs, deploys, delivers, administrates, and spreads education; a complex of technological means made available to users for the distribution of multimedia educational content. E-learning differs from other distance learning processes because it is based on technology platforms. E-learning encompasses a wide range of tools: Employee Training Platforms, webinars, online assessment tools, training management tools, tools for socialising and exchanging information between teachers/students and students/students, mobile and micro e-learning, augmented reality, and virtual reality.

Equity, Equality, and Fairness: equal is defined as the same or exactly alike; fair is defined as just or appropriate in the circumstances; equity is defined as the quality of being fair and impartial. Whereas equality means providing the same to all, equity means recognizing that we do not all start from the same place and must acknowledge and adjust imbalances.

Ethical dilemma: ambivalence towards ethical decision-making; dilemmas originate from a non-negotiable conflict of values between two possible decisions and their consequences.

Ethical issue: any concrete situation that raises questions about what is right or wrong, what is just or unjust and, in these cases, what is appropriate or inappropriate to do, etc. To identify an ethical issue, we can ask a simple question: What is at stake in the situation? What is there to lose and what is there to gain? If the answer concerns any o more ethical value (say, the concepts of good and bad), it is an ethical issue.

Ethical competence: the ability to consider values at stake to make an informed decision. Ethical competence which requires the subject's autonomy of judgement and the ability to recognise ethical issues in a given situation. A person must be (1) capable of reflective thought, avoiding automatisms or granted reactions; (2) capable to evaluate decisions in the light of current circumstances; (3) able to argue for decisions, to reflect on their acceptability and reasonableness. Ethical competence varies from one individual to another, and, in the same individual, it varies over time and according to the given context.

Ethics (from Gr. éthos, habit) or morality (from Lat. mos 'custom', 'way of life'): a philosophy discipline that studies our behaviour and the norms it obeys, either by describing how we actually act or by prescribing how we should act. In other words, ethics is that section of philosophical thought that has historically been embodied in questions such as 'what are the motives that drive individuals to act?', 'what is good?', 'what is the ultimate goal of all our actions?', 'what is happiness?', 'from where can we derive the norms that inspire our conduct?' etc. Connected to ethics is political philosophy, which deals (in a descriptive or prescriptive manner) with problems relating to associated life, taking the form of questions such as 'what is the purpose of the State?', 'what are the optimal forms of government?', 'who should rule?', 'what is justice?', 'what is freedom?’.

Ethics of Algorithms: “The ethics of algorithms addresses issues posed by the increasing complexity and autonomy of algorithms broadly defined, including AI and artificial agents such as internet bots, especially in the case of machine-learning applications—for instance, image-recognition software or automated decision-making systems. In this case, crucial challenges include the moral responsibility and accountability of both designers and scientists with respect to unforeseen and undesired consequences as well as missed opportunities. The opacity, ethical design, and auditing of algorithms, and the assessment of potential, undesirable outcomes (such as racial discrimination or the promotion of misleading or incendiary content on social media) are attracting increasing research” (Floridi, 2021).

Ethics of Data: “The ethics of data focuses on problems posed by the collection and analysis of datasets and on issues relating to their use, such as Big Data in biomedical research and social sciences, social profiling and advertising, open data, and data philanthropy (…) the possible re-identification of individuals through the mining, linking, merging, and reuse of data. Risks extend to “group privacy,” when the identification of types of individuals, independently of the de-identification of each of them, may lead to serious ethical problems, from group discrimination (including ageism, ethnicism, sexism, and more) to group-targeted forms of violence” (Floridi, 2021).

Ethics of Professional ICT Practice: “The ethics of practices addresses questions concerning the responsibilities and liabilities of people and organizations, such as governments that implement smart cities technology, in charge of digital processes, strategies, and policies. The goal is to define an ethical framework to shape professional codes—such as avoiding racial and gender bias in facial recognition—toward responsible innovation, development, and usage, which can ensure ethical practices fostering both the progress of digital innovation and the protection of the rights of individuals and groups ” (Floridi, 2021).

e-voting: any form of voting expressed with the aid of electronic or computerised tools, with the aim of speeding up or simplifying the process of expressing a preference. E-voting, like traditional voting, is distinguished into manned and unmanned voting. Supervised voting is cast at public and supervised voting stations, while unsupervised voting can be cast remotely, in any place, from any terminal and without any form of supervision at the time of casting it. Unmanned voting is also called “i-voting”, or internet voting. Unlike e-voting (electronic manned voting), which refers to a computer installed in the polling booth that speeds up the voting process but still requires the physical presence of the voter at the polling station, i-voting (internet voting or unmanned voting) involves the possibility of voting remotely via an Internet connection. Voter identification can take place through authentication on the website or by other methods (e.g., through a national ID card, or smartcard, token, etc.). The authentication process, provided with security keys and asymmetric encryption, must be designed to ensure that the expression of the vote is secure and secret, respecting the fundamental principles of voting.

Feminism (Data): “Data feminism is a framework for thinking about data science and ethics that is guided by ideas of intersectional feminism. The work of data feminism uncovers how standard practices in data science serve to reinforce existing inequalities around the world” (D'Ignazio & Klein, 2020).

Financial or other rewards: in this context, some direct benefit to human participants. If you offer such a benefit for participation in research, make clear that you are simply compensating people for their time, so that it does not seem that you are inappropriately offering inducements.

Freedoms: Freedom rights include rights such as, liberty, security, private and family life, protection of personal data, right to marry, freedom of thought, expression and assembly, right to education, property, asylum, protection in the event of removal, expulsion or extradition. They are absolute and inviolable rights guaranteed by the EU Charter. They are absolute in that they are erga omnes, i.e., they can be asserted against everyone, both private individuals and the state. They are inviolable in the sense that they cannot be eliminated even by constitutional law because they are inherent to the human being and integral to the democratic state, thus their elimination would entail the subversion of the democratic order itself. However, liberty rights can be, 1) modified, i.e., adjustments and improvements can be made to adapt them to the historical, social, and cultural contexts; and 2) limited, i.e., public authorities can place limits on the exercise and enjoyment of some liberty rights when a higher collective interest must be met.

Gender: the behavioural, cultural, or psychological traits typically associated with one sex. Gender includes four different components: (1) Genetic sex: the gender as determined by chromosomes. Chromosomes are arranged in pairs and one particular pair govern gender, XX denotes female, and XY denotes male. (2) Genital gender: the gender as determined by genitalia, which include external and the internal genitalia. Genitalia are directly determined by genetic sex and are usually described as “primary sexual characters”. The male external genitalia consist of the penis, scrotum, and pubic hair. The internal genitalia include the epididymis, vas deferens, prostate gland, and testicles. The female external genitalia include vulva, vagina, hymen, clitoris, labia minora and majora, and pubic hair. The internal genitalia include the ovaries, fallopian tubes, and uterus. (3) Biological gender: biological gender results from the whole of primary and secondary sexual characters. Secondary sexual characters are those anatomical and physiological characteristics (e.g., body size and shape, breast development, pitch of the voice, body hair and musculature, etc.) that are strongly associated with each gender and are chiefly due to sexual hormones. (4) Social gender: the gender as a distinct social group. "Social Gender" is the term used to refer to those ways in which a culture redefine biological sexes and channel them into different roles in various culturally dependent ways. Each of these gender components can or cannot be consistent with all others either through free choice of an individual or for several medical reasons. Discrepancies between genetic, genital, biological and social genders determine cases of gender ambiguity, hermaphroditism, transsexualism, transgenderism, etc.

Gender Bias in AI: "Algorithms and artificial intelligence systems have the power to propagate and reinforce gender stereotypes and prejudices, which risk marginalising women on a global scale. Considering the increasing presence of AI in our societies, this could put women in the position of being left behind in the economic, political and social spheres" (UNESCO, 2020).

Gender Digital GAP: a significant gap between participation of men and women in the digital sector at all levels still exists. According to the DG Connect report “Women in the Digital Age” (European Commission, Directorate-General for Communications Networks, Content and Technology, 2018) "data trends and qualitative analysis suggest that gender inequality in the digital sphere is essentially a result of the persistence of strong unconscious biases about what is appropriate and what capacities each gender has, as well as about the technologies themselves which requires a fundamental cultural change”.

Human Participant: a person who is the subject of study and whose personal information is used in that research. This information may be gathered directly from the individual or obtained indirectly.

Identity: the state of being the same, the “sameness in all that constitutes the objective reality of a thing: oneness” (Merriam Webster, 2022). If an object x is identical with an object y, it follows as a matter of necessity, that x and y are one and the same object. To put it another way, if (1) “A” is a name of x and “B” a name of y, and (2) x and y are the same object, (3) that object is named twice but should be counted once. In this sense, every object is identical to itself and to nothing else. The formula A=A, customarily used to express the principle of identity, means that every A is itself the same. Apparently, this statement is a truism, yet it conceals an important paradox. If every object is identical to itself and to nothing else, knowledge and science are impossible because the world would be made up of a countless number of singularities, which could be never compared with each other, known, and measured. The identity paradox can be reconciled by distinguishing two types of identity, synchronic and diachronic. If one considers two items (what appears to us to be two items) now and here (synchronically), stating that they are identical simply means to declare a misperception or misjudgement, otherwise we should admit that two might be contemporaneously one, which is nonsense. If one considers instead two items taken in different moments and places (diachronically), the idea of identity can be saved by mitigating it. In other words, one could assume the existence of essential, time and context invariant, attributes and contingent, mutable, qualities.

Identity (Digital): digital identity is defined by the International Standard Organisation as “set of attributes related to an entity. An entity can have more than one identity. Several entities can have the same identity”[1]. The ISO definition makes clear that digital identity must not be seen as an extended identity card or passport containing almost the same information. Indeed, each digital identity is made up of a number of partial identities that can be also fruitfully exploited as attributes to be used in access management.

Identity (Management): the task of identity management is to track and manage changes to all the attributes and items that define a digital identity. Identities are 'alive' in that they can change over time, depending on changes in the owner of a given identity. The difference between identity management and access management can be simplified as follows: 1) IDENTITY management is about managing the attributes related to the USER, user group or other identities that may require access from time to time; 2) ACCESS management is about evaluating those attributes based on existing policies and making a yes/no access decision based on those attributes.

Identity (Personal): Personal identity is the unique identity of a person over time, the state of being the same individual notwithstanding all physical, psychological, social changes that occur during life. Given that human beings, like every object in the world, are subject to ongoing transformation in the flow of time, the concept of personal identity is somewhat paradoxical, and indeed some philosophers have proposed that it should no longer be used. Rigorously speaking, only God could be One, always identical to himself and to nothing else. Except Him, all other beings cannot “be” in an absolute sense, they instead “have” contingent qualities. So, the idea of “absolute identification”, picking out a person as completely distinct from every other, rigorously unique, is purely metaphysical and abstract from human experience. However, some qualities are stable enough to be considered, for operational purposes, permanent or essential. Persons are usually thus identified through these qualities, although none of them is totally distinctive and permanent.

Identification: the action or process of identifying someone or something or the fact of being identified. The distinction between identity and identification is the distinction between who one is in essence (which is a metaphysical statement) and how (or in virtue of what) one may be recognized (which is a practical question). According to the current wisdom, the notion of identity has generated the idea of identification. Changes are that it is the other way around (Mordini E. , 2009). Our civilization has probably created the abstract idea of “identity” from the ordinary experience of recognition.

Integrity (right): Art. of the EU Charter reads “Everyone has the right to respect for his or her physical and mental integrity”. The European Parliament comments, “the principle of inviolability of the body and physical and psychological integrity set out in Article 3 of the Charter of Fundamental Rights rules out any activity that may jeopardise integrity in whole or in part – even with the data subject’s consent” (European Parliament, 2016). Personal integrity is violated any time that an undue and unsolicited intrusion “penetrates” the individual’s private sphere, independently from whether such an intrusion is tactile, visual, acoustic, psychological, etc. or whether it produces physical or mental injuries. In such a sense, the protection of personal integrity must be extended to the digital persona.

Integrity (moral quality): personal and professional disposition to act with honesty in the practice of one's profession.

Informed consent: the process by which a fully informed competent person participates in the choice of whether to become a human participant in research. Informed consent should happen in two stages: an information-giving stage and a consent-obtaining stage. Ideally the potential participant should be allowed as much time as they need between the receipt of the participant information and the request to give consent, but this may not always be possible. The granting of informed consent is a necessary condition for research involving human participants to proceed but is never a sufficient condition.

Invasive procedures (class A): These involve physical contact with the participant. Procedures that go beyond contact with the outer body surface, and/or involve probing internal functions using electromagnetic fields or ionizing radiation, are classified as invasive procedures (class A) and require the ethical approval of an ethics committee.

Invasive procedures (minimally invasive, or non-invasive – class B): These include passive recording of function by contact with the outer body surface without breaking the skin or involving significant transfer of energy across the skin. Video or audio recording, still photography, use of headphones, or monitoring of location and action by electronic detection of an external marker, most biometrics are not invasive procedure.

Justice: in the Western tradition, the proper act of justice is to give everyone their due. A distinction is usually made between two types of justice: commutative justice ((which requires returning to each one what they have previously given) and distributive justice (which requires giving to each one what is due to them, in proportion to their merits).

Maleficence: the act of committing harm or evil.

Metaethics: philosophical discipline concerned with the search for meaning in the face of notions of good and evil based on normative moral presuppositions.

Moral agent: the person or group of people who are faced with an ethical decision.

Non-competent people: In research ethics, a person is said to be incompetent if he/she cannot rationally or/and emotionally understand the information provided to him/her during the informed consent procedure. Persons may be incompetent because they are not legally qualified (minors under the age of 14 and persons declared incapacitated by a court of law) or the assessment of incompetence may be contextual (e.g., a person who is momentarily in a state of confusion, a person in a state of emotional shock, or even a person who does not know the language used by researcher, etc.).

Partial Identity: a set of personal attributes of a user. A user can have several partial identities. Close to the physical world, a user changes his partial identity in computer networks while thereby varying between being anonymous and being fully identifiable (FIDIS, 2009).

Participant Information: information given to potential human participants to help them make an informed decision about participation in research. This can be delivered in written form or orally.

Patients: all human participants in research recruited by virtue of their past or present medical treatment.

People whose ability to give free and informed consent is in question: Such people include incompetent participants, such as young children, people with mental health or neurological conditions, vulnerable participants such as older children, prisoners, people taking medication that affects their capacity, and some people who are not fluent speakers of the language in which the research will be conducted. They are people (a) who cannot understand the consequences of taking part in research and/or (b) who cannot communicate a decision about their willingness to participate in research and/or (c) whose social circumstances call into question their ability to make a free choice about participation.

People with a mental health or neurological condition: people whose capacity to exercise judgement is impaired because of a psychiatric or neurological condition.

Personal Data: data that relate to a living individual who can be identified (a) from those data, or (b) from those data and other information that is in the possession of, or is likely to come into the possession of, the data controller (eg through the use of a code devised by, or accessible to, the researchers). Examples include, but are not limited to, name, email address, audio/video recordings, identification number, IP address, location data, genetic data and biometric data. Note that some personal data collected for the purposes of research will be considered ‘research data’ (eg consent forms). In order to comply with the General Data Protection Regulation (GDPR), you must be clear from the outset about what personal data you are collecting, why you are collecting that personal data, and what you intend to do with it. Normally, personal data must be deleted once it is no longer required for the study. A key exemption to this is study consent forms – whilst these contain personal data, they are classed as ‘research data’ so must be retained for the same time period as other research data. The GDPR requires that the researcher provides the participant with the following information (the prescribed information):

what personal data will be held about them, and why it is needed for the research (purpose for which the data are intended to be processed)
the identity and contact details of the researcher(s) who will determine how the data is processed and the legal basis for processing the identity of persons (or categories of persons) to whom the data may be disclosed
if any of the intended data recipients are outside the European Economic Area, participants must be informed and special safeguards must be apply to data transfer
if processing is based on consent, the participants have the right to withdraw their consent at any time, without giving a reason; any further information as to how data are to be processed (for example, data encryption, and where/how long data will be stored) – must be provided;
what happens to personal data on completion of the project should be specified in details (whether research data should be kept for a minimum of three years after publication, or longer depending on funder requirements; at the end of such a period by default personal data should be erased or aggregated or permanently anonymized).
the data subjects’ rights under the GDPR must have the right to access their data, to request rectification or removal of their data, to object to processing, to lodge a complaint

Precautionary Principle: The precautionary principle is an approach to risk management whereby, if it is possible that a particular policy or action may harm citizens or the environment and if there is not yet a scientific consensus on the issue, the policy or action in question should not be pursued. However, the policy or action may be reconsidered as more scientific information becomes available. The precautionary principle is laid down in Article 191 of the Treaty on the Functioning of the European Union (TFEU). The concept of the precautionary principle was first established in a European Commission Communication, adopted in February 2000, which defined the concept and how it should be applied.

Presence: Literally speaking, “presence” means “being before someone or something”. Presence is something or someone taken in its contingent dimension, here and now. It is not difficult to understand what “here” means, to try to define what is “now” is much more difficult. You cannot grasp the “now” because as you mention it, it does not exist any longer. The “now” is always a bit too late or a bit too early to be captured. The notion of “now” is extraneous to modern science; fundamental laws of physics ignore it, and there is no experimental way to establish it. According to an anecdote told by Rudolf Carnap, once Einstein said that “the problem of the Now worried him seriously. He explained that the experience of the Now means something special for man, something essentially different from the past and the future, but that this important difference does not and cannot occur in physics. That this experience cannot be grasped by science seemed to him a matter of painful but inevitable resignation. I remarked that all that occurs objectively can be described in science; on the one hand, the temporal sequence of events is described in physics; and, on the other hand, the peculiarities of man’s experiences with respect to time, including his different attitude towards past, present, and future, can be described and (in principle) explained in psychology. But Einstein thought that these scientific descriptions cannot possibly satisfy our human needs; that there is something essential about the Now which is outside the realm of science” (Carnap, 1999, p. 64).

Pseudonymisation: 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. Pseudonymisation may involve replacing names or other details through which individuals may be identified, both directly (for example from a name, postcode, photograph, interview recording) and indirectly (for example from a characteristic that is less common or by being linked to other identifiers). Pseudonymised personal data remains personal data.

Public Interest: the common good, as opposed to benefit to individuals, or to special interest groups.

Recognition: “to know again”. Recognition is a recursive process which involves necessarily the notions of past and memory (you can recognize only something which is coming back at least twice). Personal recognition is the process through which one identifies (recognizes) a human person; it has little to do with the (philosophical) notion of “personal identity”. Persons are usually recognized through patterns of signs and attributes. None of them is totally distinctive and permanent. First, all attributes degrade long-term, including those which are treated as though they were unique and stable (e.g., fingerprints, iris), this has significant consequences as far as biometric recognition of senior citizen is concerned. Second, in real world, qualities are always mixed, they emerge from the relationship between the whole of an object and a “sensor” (biological or mechanical). Sensor precision is always limited, both in biological apparatuses and mechanical devises. It varies overtime, at different sites and according to different contextual conditions.

This implies the practical impossibility that two or more human or machine observations might exactly match. Recognition is always by approximation; the assumption that a unique identifier could ever exist is not only philosophically untenable, but it is also empirically impossible. In real life, we need a number of observations blended together to recognize an item, be a thing, or an animal or a person, and recognition is always subject to error and probabilistic. Because of all these reasons, and to avoid being entangled in metaphysical discussions which unavoidably end up by questioning whether biometric is demeaning of human dignity, the Standards Committee 37 of the International Organisation for Standardisation/ International Electrotechnical Commission Joint Technical Committee 1 (ISO/IEC JTC1 SC37) recommends a definition of biometrics that does not make any reference to identity and identification, say, biometrics are “automated recognition of individuals based on their biological and behavioural characteristics”. (Wayman, et al., 2014). From an ethical point of view, it would be advisable that SOTERIA would adopt this definition.

Remote Communication: humans have always striven to bridge separations across time and space. They have always communicated remotely, and remote communication has always had a profound emotional value. Think of the beginning of Aeschylus' tragedy, Agamemnon, with the monologue of the sentinel who keeps watch in the night waiting to see the light signal on the horizon announcing the fall of Troy. However, what is happening today with the digital revolution is something deeper: a new perception of the 'here and now' is being created, a new notion of the idea of 'presence'. As per Annette Markham’s words “Having a sense of presence without actually being there is a hallmark of Internet-mediated communication. Presence becomes a more complicated concept because it is determined by participation more than proximity” (Markham, 2013, pp. 283, 294).

Research (and development) (R&D): creative and systematic work undertaken in order to increase the stock of knowledge – including knowledge of humankind, culture and society – and to devise new applications of available knowledge Research activities may be aimed at achieving either specific or general objectives, but are always aimed at new findings, based on original concepts (and their interpretation) or hypotheses. Research is largely uncertain about its final outcome, is planned for and budgeted, and is aimed at producing results that could be freely transferred. The term R&D covers three types of activity: basic research, applied research and experimental development/pre-market research. Ethical approval is required where research includes human participants or personal data. In particular, the ethical approval is necessary for any research which (1) involves contact of any kind, including interviewing and/or observing human participants, with human subjects; (2) involves the administration of questionnaires and use of personal data (other than anonymised, non-traceable data) although no physical contact ever occurred between researchers and the data subjects, and even with data collected in advance within the context of a different research (reuse) and stored in data base.

Research data and records: the recorded information (regardless of the form or the media in which they may exist) necessary to support or validate a research project’s observations, findings or outputs. This is not to be confused with personal data.

Researcher: a person conducting research. Researchers must either have the experience, qualifications and competence appropriate to the research, or must be under the supervision of such a person or persons. Researchers should have had appropriate training in ethical matters relating to research.

Responsible Research and Innovation (RRI): the notion of Responsible Research and Innovation (RRI) has been developed within the European Commission and it is based on the core concept that the ethical values are not barriers or restraints to the conduct of research, rather they are integral to good quality research (European Commission - Directorate-General for Research and Innovation, 2013). The principle of responsibility implies concrete obligations towards stakeholders (e.g., sponsors, institutions, scientific community, publishers) and towards the general population. RRI is based on five principles, with the governance dimension as a transversal element, (1) access to knowledge (open access); (2) ethics; (3) gender issues, promoting women's access to university careers and fair treatment; (4) science education; (5) public engagement. Methodologies include (a) the use of technology assessment, privacy impact assessment, and technology foresight, (b) the application of the precautionary principle, (c) the deployment of codes of conduct for Research and Innovation, (d) the use of standards, certification and accreditation schemes and labels for research practice, (e) the incorporation of ethics in technology design.

Rights: “independent moral and political concepts (…) that limit the means that may be used to promote even the best ends” (Nagel, 2013, p. 6). This definition implies that their validity does not depend entirely on their instrumental value in promoting the maximum amount of a given good. Fundamental Rights “do not submit to such calculus: they are boundaries around each innocent person that may not be crossed, even to prevent greater evils” (Nagel, 2013, p. 8).

Rights (Digital): As announced in the Programme for the Digital Decade 2021-2030 proposed by the European Commission on 9 March 2021, the Commission has prepared the European Declaration on Digital Rights and Principles for the Digital Decade. The Declaration transposes fundamental rights of EU citizens into the digital sphere, building on the EU Charter of Fundamental Rights.

Sites: the places, for example department, laboratory, schools, clinics, or homes, where research is to be carried out.

Sensitive data: personal data relating to race, ethnic origin, sexual orientation, political opinions, religious beliefs, physical/mental health, trade union membership, genetics, sexual life, biometrics. Special conditions apply to the processing of this type of information, including an obligation to obtain the explicit consent of the individual.

Subject: the person who will be the object of decision making. The person who will have to accept the consequences of the decision, sometimes without participating in the decision.

Unexpected (incidental) findings: findings that fall outside of the scope of the research questions. A special category of unexpected findings, which poses some ethical issues, includes observations of potential clinical significance unexpectedly discovered in research participants. In research in which incidental medical findings could occur, researchers are asked to inform human participants on the policy followed to handle them.

Value: ideal way of behaving and/or thinking based on knowledge and emotions. Values are of a personal, organisational, cultural, or societal nature. Very often, individuals adhere to preformed sets of values, which could even become biases.

Virtual Reality: simulation of a real environment by means of electronic technologies, to the point of giving those who experience it the impression of being immersed in that environment. Today, the term has also taken on a broader meaning and indicates all those simulations that allow for some degree of interaction with the described environment, as is the case e.g., in video games, even when the simulation is not total, but involves only a few senses. An important aspect of virtual reality is that it allows the interaction of several people moving within a single virtual environment, even though they are tens of thousands of kilometres away.

Vulnerable Population: refers to (but is not limited to) those who are incapable of protecting their own interests and/or are fragile. The sole justification for involving a vulnerable population in research is when a particular problem affects a specifically vulnerable group and research outcomes are likely to improve their conditions. Involving vulnerable groups in research because they are easier to be recruited (e.g., people in hospitals, nursing-homes, prisons, and so) or in a state of possible subjection and subordination towards researchers (e.g., company and lab employers, students, and other people who may feel difficult to refuse to participate or can be induced to accept because of a financial reward), is an ethical misbehaviour.

[1] ISO/IEC 24760-1:2019 IT Security and Privacy — A framework for identity management — Part 1: Terminology and concepts - https://www.iso.org/standard/77582.html

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ETHICAL Desk

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