Ethics

The points and questions below offer a guide for researchers at the Faculty of Humanities to reflect on ethical considerations in their planned human-subject research :

• Ethical guidelines and code of conduct: Are you aware of both the ethical guidelines that apply within your field and the Netherlands Code of Conduct for Research Integrity (KNAW, 2018)?

• Participants: Are the participants of your intended research legally capable adults or are they people from marginalized or potentially vulnerable communities (<16 years old, legally incapable, socially vulnerable)?

• Selection method: Could participants possibly feel pressured to participate in your study (socially, financially)? How do you plan to recruit your participants?

• Voluntary participation: Can participants participate in your research completely voluntarily? Can participants freely choose to participate and always stop participating at any time without adverse consequences?

• Hierarchical relationship: Is there a hierarchical relationship between the researcher and the participants, such that completely voluntary participation cannot be guaranteed (e.g., teacher–student relationships)? In that case, there are ethical concerns, and, if consent is the GDPR legal basis, given consent is not legally valid.

• Burden on participants: Is the burden (e.g., time, effort) of your planned study acceptable and proportionate in your opinion? How will the well-being of the participants be safeguarded?

• Uncomfortable research: Could the research be uncomfortable and/or perceived as stressful? For example, are sensitivities discussed, are emotional memories asked about, or is it an EEG study in which participants have to sit still for a long time and where gel gets into their hair?

• Data collection: How do you obtain your data? If not directly from participants, but indirectly, for example via web scraping, fill in the Self-reflection Guide Human-Based Big Data Research. Such studies are not assessed by the FEtC-H.

• Unexpected results: How do you deal with incidental findings[1] and by-catch[2]? For example, what do you do when a test shows that someone may have dyslexia or that someone may have committed a criminal offence? Is there, for instance, a guideline from your field that you can draw on?

• Deception: Is it necessary to mislead participants? Sometimes you cannot tell in advance what the research is about, because otherwise the result might be affected. In such cases, you should inform participants afterwards.

• Compensation: Are participants compensated in any way (e.g. financially, in credits) for their participation in the research? If so, is this proportionate and, for example, not so much that participation is in fact no longer completely voluntary?

• Conflict of interest: Is there a possible conflict of interest? This may involve a real, potential or perceived conflict of interest on the part of the researcher, the research institute or the funding body.

• Abroad: Is the research being conducted in the Netherlands? If not, check whether ethical assessment is required in the country where the research is being conducted. In any case, it is important that the cultural and political context is taken into account in all (ethical, but also privacy) considerations.

• Language and culture: Are there differences in language or cultural background between the researcher(s) and the participants? If so, how will you handle this and how might this affect data collection? How will you ensure that the participants’ answers or responses are accurately represented?

• Language: What is the native language of the participants in the research? Can the information about your research be provided in Dutch or in English? Will it be understood well enough by each participant? Check whether the documents for the participants or the oral explanation need(s) to be provided in another language: participants need to understand what they are agreeing to or giving permission for.

• Risks for participants: If relevant, have you made a risk analysis of the possible consequences of the research for participants, for population groups or for third parties (e.g., discrimination or exclusion, financial problems, risks of infringement of other fundamental rights, etc.)? The starting point for human-subject research is the ‘do-no-harm’ principle. The risks for participants must be acceptable and in reasonable proportion to the expected benefits of the research.

• Risks for the researcher: As a researcher yourself, do you run any risk in, with or through this research? If relevant, make a risk analysis to see to what extent the planned research is potentially harmful to you as a researcher yourself or to Utrecht University. Such harm is conceivable, for example, in the case of research into socially extreme groups or into extreme behaviour, where personal data (such as contact details) of individual researchers require additional protection.

• Information provision: Is the information provided about the study understandable to the intended participants? Are the participants, prior to the study, correctly and fully informed about all aspects of that research, and if the GDPR applies, about their rights regarding the processing of their personal data?

• Complaints procedure: Is there a complaints procedure for participants? What procedure is in place to address complaints about the study or about privacy and confidentiality? See also the sample documents.

• Anonymity and privacy: Do the participants remain anonymous (in the case of complete anonymity, the GDPR does not apply) or are pseudonyms used, or does the participant agree to the disclosure of his/her identity?

• Privacy: If you collect traceable data from your participants (personal data), the GDPR applies and you as a researcher have obligations towards your participants and your participants have certain rights. Information about this can be found on the website of the FEtC-H (‘How does it work?’ Privacy and GDPR) and in the Data Privacy Handbook of UU. You can also take a short e-learning training on privacy.

• Adequate data management: Are participants’ data adequately processed and managed? See also the website of the FEtC-H (‘How does it work?’, Data management).

[1] Incidental findings or conclusions include e.g.: the detection of child abuse, terrorist threat, crime, undiagnosed condition.

[2] By-catch includes data that are not needed to answer the research question, but which are inevitably collected during the pre-analysis phase.