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Visual informed consent

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As TeSLA instruments collect personal data, students need to be informed about the type of data that are being collected, how they will be stored and processed etc. before they are asked for their consent. Informed consent is a legal document regulating the relationship between parties. This can be for instance researchers and subjects, but also educational institutions deploying TeSLA and their students. It is usually a written form and signing of this form authorizes use of data for the specified purposes and in the ways described. But how effective is a written form for obtaining a consent? It complies with the legal requirements but does not guarantee that a potential participant completely understand what (s)he is consenting to. Current discussions on the effectiveness of consent form presented only in words has led researchers to think about possible alternatives (Lie & Witteveen, 2017).

Alternative forms for obtaining a consent that can guarantee that potential participants are aware about terms and conditions, risks and benefits, own rights and duties, include interviews and videos explaining the informed consent. One particular international study carried out by a group of scientists from the Univerisity of Wageningen (Lie & Witteveen, 2017) has investigated the informed consent process through recorded interviews. They conducted a series of interviews with potential participants of a study and discussed conditions of their participation face-to-face. During the interviews people were asked to answer a few questions about their wish and willingness to participate in the study and their expectations. The researchers focused on things like body movements, facial expressions, gestures, and emotions that sometimes can say even more about people’s understanding of content than having a signature on the paper. The video recording of the interview was used as a replacement of a signed consent form. The authors call this a visual informed consent. Other researchers speak of “negotiated consent” (Grout, 2004) emphasizing that parties achieve a consent through continuous negotiation process, or “educated consent” (David, Edwards, & Alldred, 2001) meaning that achieving a consent requires from parties learning and understanding each other’s needs.

A visual informed consent has some advantages comparing to a written form and can improve the process of obtaining consent, which according to the authors, is not only about transparency of the procedure, but also about respect for potential participants and their right to be informed. A person being aware of what (s)he is consenting to, will also feel confident to ask questions and make an autonomous decision.

The authors point out several disadvantages of a written form, some of which are also relevant for the informed consent practice within TeSLA:

• consent is often given on the basis of trust rather than information given in a consent form;
• cultural differences and differences in norms and traditions cannot be directly taken into a consent form and need to be discussed;
• potential participants are not educated about legal terms and procedures and need additional clarification to understand content of a consent form;
• informed consent forms are often used to comply with legal requirements and do not address participants’ needs;
• it is often almost impossible to say exactly what risks or negative consequences may arise from consenting e.g. to take part in a study;

The following conclusions were drawn:

• by visual informed consent participants were completely informed about the planned study and confirmed their participation by answering questions about their motivation and willingness to participate;
• visual informed consent enabled researchers to identify the level of interviewed person’s understanding;
• visual informed consent provided opportunities to talk about cultural differences and to adapt the consent in accordance with the requirements of each individual participant;
• it also allowed parties to discuss issues that raised spontaneously, face-to-face which can be problematic if it is a written form.

Though the procedure followed by the University of Wageningen is feasible only in small scale studies, their findings can and should be used to further improve informed consent procedures. Whereas in this study much attention has been paid in the interviews to people’s motivation, with respect to informed consent for TeSLA it will be interesting to carry out interviews to investigate people’s understanding of their rights and duties regarding privacy, as well as consequences and possible risks. The information gathered through these interviews can then be used to better adapt the information provided to obtain informed consent, to users’ needs.

Being a PhD Candidate at the Open University of the Netherlands I conduct a research on personal data use and informed consent in e-assessment. The research will result in a protocol and a tool for obtaining informed consent that fulfills both legal and usability requirements. The methodology will include a literature review, as well as quantitative and qualitative studies.

References

David, M., Edwards, R., & Alldred, P. (2001). Children and school-based research: “informed consent” or “educated consent”? British Educational Research Journal, 27(3), 347–365. http://doi.org/10.1080/01411920120048340

Grout, G. (2004). Using negotiated consent in research and practice. Nursing Older People, 16, 18–20.

Lie, R., & Witteveen, L. (2017). Visual informed consent: informed consent without forms. International Journal of Social Research Methodology, 20(1), 63–75. http://doi.org/10.1080/13645579.2015.1116835

Ekaterina Mulder, PhD Candidate

Dr. Jose Janssen, Assistant Professor

Open University of Netherlands