One of the early tasks for the Arabic symbol dictionary team will be gathering focus groups to make choices around the types of symbols and pictograms that would be most suitable for the dictionary. This will involve working with vulnerable individuals such as those who have disabilities, young children and the elderly.
There has already been a series of processes required in order to gain access to research participants that have entailed working with an ethics committee. Samples of questionnaires, consent forms and letters of intent have been provided. As usual these have been paper based and require a level of literacy skills. In some cases it will be the carers or assistants of the vulnerable individual who will be answering the questions and even providing the consent.
There are many questions that could be asked about this procedure such as:
- Who benefits from the ethics process and what are the outcomes?
- Should they be related to the organisation’s concerns pertaining to a duty of care?
- Are there fears that mistakes will be made, which could lead to possible litigation?”
Or, as was raised in a recent focus group, are there issues of transparency, the wellbeing of the individual and the need for an understanding around the concept of informed consent not just at the time of agreeing to participation but throughout the project’s lifetime?
The focus group held at the University of Southampton this week brought together a group of researchers who had experience working with vulnerable individuals and were interested in the dilemmas surrounding ‘informed consent’. The meeting was part of a wider research project being undertaken by researchers from the Universities of Southampton, Oxford and Kings College London.
Some important key points came out of the discussions that should be considered. It was felt that the informed consent process should:
- be more flexible in the way it is presented to any future participants
- be sensitive to context, gender and age as well as to the cultural and social background of the participant.
- make sure there are checks in place to confirm understanding of what is involved when participating and the outcomes of participation
- include the use of multimedia and multimodal methods to explain what is entailed such as animation, pictures and audio – not just to gain positive or negative responses at the outset of the project but throughout the project lifetime.
- allow for ways of capturing feedback from the participants, such as video to check facial features and other gestures not just audio recordings
- involve participants in the process as much as possible
- allow for increased vigilance regarding the views of individual participants or the group’s views even if carers or assistants have provided the informed consent.
- offer personalisation of technologies to increase access to different ways of providing informed consent.
- respect a participant’s wish to withdraw, temporarily stop or change the way they are working with the researcher, even if this affects the data collection process
- take into account any feelings of concern due to the dynamics of power in terms of human interactions – the use of technology could possibly overcome this sort of issue
- re-visit areas of informed consent if the project changes in any way
References
Parsons, S. and Abbott, C. (2013) Digital technologies for supporting the informed consent of children and young people in research: the potential for transforming current research ethics practice. EPSRC Observatory for Responsible Innovation in ICT. Web Page accessed 16/01/2014 http://eprints.soton.ac.uk/356044/
Parsons, S. and Cobb, S. (2013) Who chooses what I need? Child voice and user-involvement in the development of learning technologies for children with autism. EPSRC Observatory for Responsible Innovation in ICT Web page accessed 16/01/2014 http://eprints.soton.ac.uk/356044/
Mukhola, S., Brown, R., Godsell, G., Henning, E., Lotz, N. & van Rooyen, H. (2005). Storytelling as a means of obtaining informed consent in an adult educational enquiry. In ISIMD 3rd International Symposium of Interactive Media Design Web Page accessed 16/01/2014 http://newmedia.yeditepe.edu.tr/pdfs/isimd_05/23.pdf