Description
In this presentation we report our experiences with recording data. Specifically, we focus on the mismatch between ethical committee requirements in terms of seeking informed consent and our experiences in the field.In 2022 we collected data for a project on consultations about, amongst other things, HPV-vaccination. The project focuses on the consult in which the public health nurse, a 9/10-year-old and one or two parents or caretakers discuss the 9-year old’s health and the HPV-vaccination. This is important because the vaccination rate for HPV is low, especially amongst people with a Turkish and Moroccan immigrant background (RIVM 2021). This is why we sought to include these groups by choosing two locations with a low vaccination level.
We received ethical approval from the Faculty’s Ethical Assessment Committee - Humanities. We wrote a 4-page information letter according to format and guidelines of our Faculty’s Ethical Assessment Committee. This letter was included in the invitation for the appointment by the public health service; the invitation was sent two weeks prior to the appointment. Also included in the invitation was a consent form that involved options concerning the reuse of transcriptions, the use of unrecognizable recordings and permission to ask for vaccination information. These options were given in order to give participants more control over their data.
While asking for informed consent and collecting data, we made notes of feedback that we received from public health nurses and prospective participants. We experienced that the informed consent procedure that we were following missed the mark in various ways. First, the information letter was too long for people to read. Second, the information and the form were too complicated for many of the non-native speakers of Dutch. Third, the format of an information letter is probably not suitable for the target group of 9- and 10-year-olds.
We argue that a balance should be found between completeness of information on the one hand, and making information attractive, easy to read and accessible on the other hand. Current requirements for ethical approval lean too much towards legal documents and ensuring legal security. We must therefore discuss the balance between ‘informedness’ and participation of people who are generally underrepresented in research.
| Period | 31 Oct 2022 → 4 Nov 2022 |
|---|---|
| Event title | Digital Meeting on Conversation Analysis (DCMA) |
| Event type | Conference |
| Degree of Recognition | International |