Last week I went to the University of Leeds to attend a morning workshop run by Dr Janet Holt on ‘Involving the Public in Research’, organised by the University’s Research Support Team.
I went to this training to learn more as we continue to develop our research ethics procedures at Bradford College. We don’t do medical experiments or large-scale scientific or environmental tests. Our most common research ethics issues are around the involvement of human beings in research, as researcher or participant. So this was the workshop for me.
Dr Holt was an excellent – and impressively qualified – guide. She is a Senior Lecturer in the School of Healthcare at the University of Leeds, and a registered nurse and midwife with a BA (Hons) in Philosophy from the University of Leeds, an MPhil in Applied Philosophy from the University of Manchester and a PhD in Psychology from the University of Leeds. At the University, she is Chair of the Faculty of Medicine and Health Research Ethics Committee. She is an expert member and Vice Chair of Leeds Central NHS Research Ethics Committee. She is also an external member of the Research Ethics Committee in the Faculty of Business and Law at Leeds Metropolitan University and one of ten people appointed to the Ethics Committee of the Royal College of Nursing.
These are some of the main points from the workshop:
Trust: there is a reliance on researchers being honest and the best thing is to be morally responsible from the outset. I was interested in this, because no research ethics committee can fully know whether its ethical guidance or requirements are applied, though many universities run spot checks and there can be hefty penalties for those who get it wrong. A good ethical culture and training has to underpin the research ethics policy.
Informed consent: this is key. Dr Holt dwelt on the importance of the concept of autonomy in the UK. People expect and have the right to make informed choices about whether they participate in many things, including research. They need to do this freely, without concern for power relations or possible consequences. The information sheet given to potential research participants is an essential component and needs to considered early in the development of the research project. There was a short but stimulating discussion about the possibilities of using video, audio and other online tools to inform potential participants in appropriate ways, of great interest to me with my communications hat on, and as I complete a course in E-learning and Digital Cultures. The bottom line is that securing evidence of valid informed consent is a prerequisite to doing research, and this is not always easy. Persuading people to take part in your research is a fine art, and sometimes very sensitive.
Protection from harm: harm may be physical or psychological, or perhaps take other forms such as time and cost. The researcher may be at risk as well as the participant. Sometimes research requires that the participant be kept in the dark in some way, or even deceived. This can be acceptable, but needs to follow strict ethical guidelines and needs scrutiny and clearance by the research ethics committee.
Confidentiality: this is distinct from anonymity. Anonymity refers to concealing the identities of participants in all outputs resulting from the research; confidentiality is concerned with who has the right of access to the data provided by the participants. The data protection act provides a legal framework for this. Researchers have a duty to ensure confidentiality, which can only be breached with prior consent (and must be breached in particular circumstances such as potential harm or disclosure of criminal activity).
It’s really important at the College that we have a system that is robust but at the same time not overly bureaucratic or disproportionate to the scale of risk, and Janet was very alert to this. We could have spent a week or longer on the topic overall. It is always helpful to meet up with others who have to address research ethics principles. Real life issues do not always fit neatly with the guidelines! So a very useful morning.
By: Ruth Wilson, Development Consultant, Bradford College (see ‘About’)