Research Ethics Glossary
Ethics Glossary
Anonymisation
Anonymisation involves techniques that can be used to convert personal data into anonymised data. Anonymisation is increasingly challenging because of the potential for re-identification.
Dual Use Research
Research conducted for legitimate purposes that generates
knowledge, information, technologies, and/or products that can be utilized for benevolent or harmful purposes Swiss academies Reports, Misuse potential and biosecurity in life sciences research (Vol. 12, No 3, 2017, p. 10):
Observational research / Participant Observation
Participant observation is a method in the social sciences with which researchers intend to gain a holistic overview of the studied context through engagement in, and observation of, the setting to describe its
population, social environments, processes and relationships.
Personal data
- Personal data is any information that relates to an identified or identifiable living individual. Different pieces of information, which collected together can lead to the identification of a particular person, also constitute personal data.
- Personal data that has been de-identified, encrypted or pseudonymised but can be used to re-identify a person remains personal data and falls within the scope of the GDPR.
- Personal data that has been rendered anonymous in such a way that the individual is not or no longer identifiable is no longer considered personal data.
- For data to be truly anonymised, the anonymisation must be irreversible.
For further reading, please visit the Website of the European Commission "What is personal data?"
See also Art. 4 on the GDPR Website gdpr-info.eu
Processing of personal data
Processing of personal data means: any operation (or set of operations) performed on personal data, either manually or by automatic means. This includes: collection (digital audio recording, digital video caption, etc.), recording, organisation, structuring & storage (cloud, LAN or WAN servers), adaptation or alteration (merging sets, appification, etc.), retrieval & consultation, use, disclosure by transmission, dissemination or otherwise making available (share, exchange, transfer), alignment or combination, restriction, erasure or destruction.
See also the following PDF Document: Horizon 2020 Programme - Guidance How to complete your ethics self-assessment
Sensitive personal data
are personal data specifying medical or health conditions, racial or ethnic origins, political opinions, religious beliefs, ideological or trade union related views or activities, sex life, information on social security measures, administrative or criminal proceedings and sanctions, etc.
See Art 3. FDPA; Art. 9 GDPR
Pseudonymisation
entails substituting personally identifiable information (such as an individual’s name) with a unique identifier that is not connected to their real-world identity, using techniques such as coding or hashing. However, if it is possible to re-identify the individual data subjects by reversing the pseudonymisation process, data protection obligations still apply. They cease to apply only when the data arefully and irreversibly anonymised.
For further reading please consult the PDF Document entitled:
Ethics and data protection
Vulnerable participants
Groups considered vulnerable because of their circumstances may include: children, refugees, irregular migrants, sex workers, people with cognitive impairments, dissidents, traumatised people at risk of re-traumatisation (e.g. people from conflict areas, victims of crime and/or violence); and people in dependent relationships with the researcher or the research team (e.g. students doing course work with researchers).
EU-Guidance Ethics in Social Science and Humanities 2021, p.11