Ethics and Anonymisation of Research Reports

These notes provide background to the report Ricky and Steve wrote for the residents and staff of ‘Bankside Hostel’ (See Report with pictures and words) . If you look at the report, you will see that some photographs have been taken out and replaced with a description of the photograph. We have also changed the name of the hostel and of the people who helped with the work. This type of editing is one way of addressing ethical issues. In this case, there are a number of relevant ethical issues. These include the protection of the service users and staff involved in the research. We also need to think about the rights of service providers (who also have responsibilities towards the service users) who should have some control over what is published.

In this particular case, the University Researchers and the service providers decided it would be a good idea to remove the pictures. But what about the people who lived and worked in the hostel and now live and work in the bungalows? What are their rights and what are our responsibilities to them?

Consent to publish names and photographs is a complex issue when working with people who are supported by services. The consent of the hostel residents about the use of photographs they have taken, photographs of them and photographs of the buildings in which they live, is not straightforward. Some residents may be unable to give informed consent on their own behalf. Other people may not fully understand the implications of such ‘consent’. In these sorts of situations it is often easier to seek the consent of the service providers (in this case the Social Services Department). They usually want to be involved in decisions about service users’ participation in research, whether or not the service users are able to consent for themselves. This position is intended to protect vulnerable people from those who would seek to exploit them or persuade them into something that could result in harm. Of course, this means that some groups of people may never be given the opportunity to consider whether they would like to give, or withhold, consent on their own behalf.

The legal situation regarding people with learning difficulties’ capacity to consent to social research is complex and has recently changed (see below).

Debate about the use of photographs from the Bankside project is linked to wider concerns about the use of images on the internet. This web based resource on ‘Partnership Research’ is a form of mass media and all photographs will be available to anyone with internet access. The actual harm that may come to anyone whose picture is included is debatable. However, it seems increasingly the case that images are not used where there might be some, usually unspecified, possible harm (e.g. on news programmes the faces of children are, generally, disguised or blurred). In addition, there are the usual questions about informed consent to consider. If there are risks involved in publishing images then how are these risks explained and can research participants necessarily grasp the possible repercussions of including their picture in the published research? Of course, having experience and understanding of the mass media (an ‘informed’ position) does not necessarily guarantee a grasp of the implications of one’s representation in the media. In one case we know of, a young homeless man who had agreed to have his photograph on a website was horrified to see it reproduced on a poster which was distributed nationally. He explained that his parents were unaware of his circumstances and was concerned they might see the poster.

Of course, Social Services who manage Bankside Hostel have rights and responsibilities regarding how the residents and the institution are represented. They have their own interests and reputation to consider. It is also the case that without the permission of Social Services this research would never have been carried out. An agreement was reached before the work began that Social Services would have the right to review the findings of the research and comment on them. In such a case, we always hope it will be possible for all parties to agree on an account before it is published. This was achieved in this case and we would like to acknowledge the contribution of Social Services in making these reports more widely available. As a general rule, we believe we should work with an organisation like Social Services to support all parties in learning from research. This means putting great emphasis on keeping the commissioners of research informed at all stages, explaining in detail the methodology and findings as they develop, and seeing the process of research as part of its educational intent. Such an approach, however, leaves the onus for consent with Social Services and, by default, the people who lived in ‘Bankside Hostel’ have little say as to how the hostel (their home) is represented to the outside world.

Recent legal changes
The law on Capacity and Consent changed in 2005. Sections 30 – 34 of the Mental Capacity Act 2005 relate specifically to consent to research. The Department of Health also issued a new Research Governance Framework for Health and Social Care in April 2005.

Neither of these were in place when ethical approval was sought for the Bankside Hostel project.

Information about Capacity and Consent from the Department for Constitutional Affairs – includes helpful guidance leaflets

Mental Capacity Act 2005 – Summary

On-line conference about Values and Mental Capacity