Research Ethics Glossary

Anonymization involves techniques that can be used to convert personal data (incl. sensitive personal data) into anonymized data. Anonymization of data is the process of irrevocably altering data, respectively the information contained therein, so that it is no longer possible to identify a natural person. Accordingly, data has been anonymized if it is no longer possible – or only with disproportionate effort – to assign the data to a specific person.

If data ha been fully and irreversibly anonymized, it does no longer legally qualify as personal data. This has important implications for the handling of the data in the research process, as it hence no longer falls under data protection legislation. However, researchers should bear in mind that anonymization is increasingly challenging because of the potential for re-identification and/or anonymizing data does not preclude research ethic issues.

Source: EU-Guideline Ethics and Data Protection 2021
 

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 Art. 1, Ziff. 2, b

Research that is categorized 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).

Reglement betreffend besonders risikobehafteter Forschung Art. 1, Ziff. 2, c

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.
Guide to Participant Observation

«Personal data» generally speaking is data that contains information relating to a natural person, making the person identifiable. «Sensitive personal data» is a subset of personal data that is more sensitive in nature because of the kind of information it contains (like for example sexual orientation, religious or political opinions, health status, etc.) and that therefore entails a heightened risk of violation of fundamental rights.

Below the main legal frameworks for researchers at the University of Basel: (1) the data protection legislation of the Kanton Basel-Stadt, (2) the Swiss national legislation and (3) the European data protection regulation. If personal data are collected outside Switzerland and the EU, the researcher needs to consult the data protection law of the country in question. Please consult the respective laws directly (for the cantonal and national legislation, please consult the laws in German):
 

(1) Informations- und Datenschutzgesetz IDG des Kantons Basel-Stadt:

• Personendaten: «Personendaten sind Informationen, die sich auf eine bestimmte oder bestimmbare natürliche Person beziehen» (IDG, Art. 3, Ziff. 3)
• Besondere Personendaten: IDG, Art. 3, Ziff. 4

(2) Bundesgesetz über den Datenschutz (Datenschutzgesetz DSG):

• Personendaten: «Personendaten: alle Angaben, die sich auf eine bestimmte oder bestimmbare natürliche Person beziehen» (FDPA, Art. 5, a)
• Besonders schützenswerte Personendaten: DSG, Art. 5, c

(3) General Data Protection Regulation (GDPR) of the EU:

• Personal data: «’Personal data’ means 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)
• Special categories of personal data: GDPR, Art. 9

«’Processing’ means any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction;» (GDPR, Art. 4, 2)

1. Informations- und Datenschutzgesetz (IDG) des Kantons Basel-Stadt:
   «Bearbeitung»: IDG, Art. 3, Ziff. 5
    
2. Bundesgesetz über den Datenschutz (Datenschutzgesetz DSG):
   «Bearbeitung»: DSG Art. 5, d
    
3. General Data Protection Regulation (GPDR) of the EU
   «Processing of personal data»: GDPR Art. 4, 2

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

Reglement betreffend besonders risikobehafteter Forschung Art. 1, Ziff. 2, d

Pseudonymization 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 pseudonymization process, data protection obligations still apply. They cease to apply only when the data are fully and irreversibly anonymized.

Source: EU-Guideline Ethics and Data Protection 2021