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Research about/with Human Participants

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What do we mean by research About/With human participants?

‘Research about/with human participants’ refers to a category of (geo)research that involves the collection, processing, and analysis of data about or with human beings or research that has a more direct impact on people. This category includes scientific research utilising data collection methods requiring direct input from human participants (e.g., interviews, surveys, physical or digital behavioural/physiological observations - including living labs-, citizen science projects, experiments with direct input from participants, focus groups, research based on crowd-sourced or social media data). Within this category, some research may involve the collection of personal data, prompting the need for careful considerations, including proper informed consent and responsible data processing practices (as detailed in the section below).

Another group of research within this category involves research dedicated to developing systems that could impact human beings (e.g., systems built on people's demographic characteristics, predictive models related to (geo-)phenomena that could directly or indirectly affect human beings, models or systems with the potential to be used for surveillance through location analysis, among other applications). Due to the potential impacts and risks associated with these types of research, a thorough ethics assessment by the GEO Ethics Committee is deemed necessary.

  • PROCESSING PERSONAL DATA IN (GEO-) RESEARCH

    Personal data can be processed, according to the EU's regulation on privacy and personal data protection (General Data Protection Regulation, GDPR), if you have legal grounds for it. By processing, we mean all processes that can be done with personal data, including, but not limited to, 'collecting, recording, organisation, structuring, storing, adapting or altering, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction of data' (see [1]).

    According to the GDPR, personal data is defined as 'any information relating to an identified or identifiable natural person (the 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.' (see [1], pp. 6).

    It is important to mention that for anonymised data (i.e., data where the person is no longer identifiable), the GDPR does not apply. However, for pseudonymised data, where individuals can still be re-identified when combined with additional data, the GDPR does applies. Therefore, organisations and researchers need to adhere to the GDPR regulations when processing personal data and take necessary measures, especially when dealing with pseudonymised information, to protect individuals' privacy rights.

     For more information

    References

    [1]Kamp, M., Kamphuis-Blikman, L., Koelen, M., Koster, N., van de Ven-Davids, M., and Willigen, P. (2022). 'Appropriate Use of Personal Data in Scientific Research According to the GDPR'. University of Twente

  • INFORMED CONSENT IN RESEARCH

    What do we mean by 'informed consent'?

    ‘Informed consent’ refers to the voluntary agreement given by research participants, providing the researcher(s) with a legal basis for processing personal data. It is a crucial step in obtaining permission to collect, share, preserve, and use a participant's personal data for research purposes.

    For consent to be considered informed and freely given, participants must be provided with clear and comprehensive information about the research activities they will be involved in, the details of data processing, and their rights as research participants. Specifically, participants should have unambiguous knowledge about the type of data that will be collected, the entity responsible for controlling their data, and how their data will be utilised.

    According to the General Data Protection Regulation (GDPR), participants must be informed about their rights, including the right to withdraw consent and, if possible, to remove their data from the research analysis. The process of withdrawing consent and removing data should be as straightforward as the initial consent process.

    All personal data processing must align with the details outlined in the informed consent form provided to participants. This ensures transparency, respect for participants' autonomy, and compliance with data protection regulations.

    How can 'informed consent' be given and documented?

    Informed consent can be given and documented through various methods. The most common forms include:

    • Written and signed (participants are provided with printed consent forms).
    • Verbal/oral consent (this is usually recorded).
    • Online consent (after being provided with detailed information on the activity, when a participant, for instance, submits an online survey, actively ticks boxes agreeing to the uses of their data, etc).

    There is also passive consent. Nonetheless, this is not recommended in most cases and might only be acceptable in specific and special conditions.

    For more information and more details on the types of consent, you can visit the Humanities and Social Sciences (HSS) Ethics Committee website, where detailed explanations of each type of consent are available.

    informed consent examples

    These are examples of informed consent forms you could use. Please be aware that they are only examples and need to be adjusted to your specific research, activities, and types of data processing. Look at them carefully and adapt them to your research.

    We are sharing an example of an informed consent form further adapted from a GDPR-compliant version created by the HSS Ethics Committee (BMS Faculty) Template with input from TU Delft. We have adapted it considering further scenarios we have frequently seen in GEO research projects.

    Download an Informed Consent Example (English) Last update: November 2022

    MORE INFORMATION

    UT's domain-specific committee on Human and Social Sciences (HSS) website provides more details and resources on Informed Consent, what it entails, the different types, and further guidance documents.

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