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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 of Concern DURC

Research that, on the basis of current knowledge, is likely to generate knowledge, information, products or technologies whose direct misuse poses a threat with far-reaching potential consequences for public health and safety, crops and other plants, animals, the environment, materials or national security.

Reglement betreffend besonders risikobehafteter Forschung» DE/EN  Art 3, Ziff. 2, e)

Gain-of-Function Research (GOF)

Gain-of-Function Research (GOF) is categorised as particularly risky when biological experiments are carried out with the intention of increasing the transmissibility and virulence of pathogens. In addition to biosafety risks (i.e. unintentional or accidental release of specific biological agents and toxins) GoF research also includes particular biosecurity risks (i.e. intentional or negligent release of biological materials or the acquisition of knowledge, tools, or techniques that could be used to cause harm).

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.

See also UEK Guideline to Participant Observation

Personal data / Personendaten

  • Personendaten sind Informationen, die sich auf eine bestimmte oder bestimmbare natürliche Person beziehen. (IDG, Art. 3, Ziff.3)
  • Personendaten: alle Angaben, die sich auf eine bestimmte oder bestimmbare natürliche Person beziehen. (BDG, Art.2, a)
  • ‘Personal datameans any information relating to an identified or identifiable natural person (‘data subject’); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person. (GDPR, Art. 4, 1)

Potential Pandemic Pathogens Research (PPP Research)

Research with dangerous pathogens that are highly likely to trigger a pandemic if released

Sensitive personal data

The legal terminology referring to "sensitive personal data" differs in the data protection regulations to one or several of which researchers at the University of Basel generally have to comply:

  • Cantonal Data Protection Law of the Canton of Basel-Stadt (Informations- und Datenschutzgesetz, IDG, Art. 3, ziff.4) Besondere Personendaten
  • Federal Data Protection Law of (Bundesgesetz über den Datenschutz, BDG, Art. 5, c) Besonders schützenswerte Personendaten
  • European Data Protection Law (General Data Protection Regulation, GDPR, Art. 9) Special categories of personal data

But the definitions of "sensitive personal data" in these three are similar in scope

1. IDG Personendaten, bei deren Bearbeitung eine besondere Gefahr der Grundrechtsverletzung besteht (sensitive Personendaten), insbesondere:

  1. Angaben über die religiösen, weltanschaulichen, politischen oder gewerkschaftlichen Ansichten oder Tätigkeiten;
  2. Angaben über die Gesundheit, das Erbgut (genetische Daten), die persönliche Geheimsphäre, das Sexualleben, die sexuelle Orientierung oder die ethnische Herkunft;
  3. Angaben über Massnahmen der sozialen Hilfe;
  4. Angaben über administrative oder strafrechtliche Verfolgungen und Sanktionen und
  5. mit speziellen technischen Verfahren gewonnene personenbezogene Daten zu den physischen, physiologischen oder verhaltenstypischen Merkmalen einer natürlichen Person, welche die eindeutige Identifizierung dieser Person ermöglichen oder bestätigen (biometrische Daten).

2. BDG besonders schützenswerte Personendaten sind:

  1. Daten über religiöse, weltanschauliche, politische oder gewerkschaftliche Ansichten oder Tätigkeiten,
  2. genetische Daten,
  3. biometrische Daten, die eine natürliche Person eindeutig identifizieren,
  4. Daten über verwaltungs- und strafrechtliche Verfolgungen oder Sanktionen,
  5. Daten über Massnahmen der sozialen Hilfe;

3. GDPR personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation

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

Research 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.

  • 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 datameans 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

  • 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 (PDF)

  • 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 independent relationships with the researcher or the research team (e.g. students doing course work with researchers).

    Source: European Commission - Ethics in Social Science and Humanities PDF Document

Weiterführende Informationen

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