After posting excerpts of Janet’s Journal I have been looking into the ethical aspects of this type of work, I have the model release form but I’m not sure about the journal, I found an interesting website that seems to cover most of the questions I had but not all.

http://www.photoshare.org/resources/development-photography-ethics

These are my Ethical Guidelines

Informed consent

It is important to ensure that anyone who is being interviewed has given his or her informed consent to be included in my research project. This emphasis upon informed consent means that it is your responsibility to inform people fully about the purpose of your research, so that they can understand what they are being asked to take part in, and then freely choose whether or not to participate.

In line with this stress upon informed consent, it is important that anyone participating in my research gives formal, written consent. So my research will include a copy of the form, which people will sign to indicate their consent to be involved in the research process. Such formal, written consent needs to be in place before I start interviewing people, or observing the behavior of a group of people.

I have spent most of the past few months working on the ethics of informed consent. The wording of these guidelines implies that the people being interviewed are both literate and members of (that is, having a stable place within) mainstream society, this holds true for all of the people I intend to interview.

My intended Form of Consent is given at the end of this section. My plan is to say these words at the start of each interview, and to offer a photocopy of my notes for the interviewee to take away with them at the end. I will not identify the interviewee I will use a different name other than, for example, Janet aged 65.

The people I Interview are often people who whom extraordinary things have happened, and if I were to give their full stories, it is likely that a number of them could be identified in this way. But…

Firstly, people who already know the stories could only identify them, and most of these people are very unlikely to be reading my journal. Secondly, I do not intend to use the distinctive stories within my journal. How people handle the issues relating to suffering can be adequately dealt with by consideration of the suffering itself at a reasonably abstract level: I can refer to a ‘close family member’ without going into the details of the individual’s convoluted family history. Thirdly, I will be careful to write in a way that ensures that even if a reader can identify (or suspects that they can identify) an individual being referred to, the individual will not suffer in any way from this recognition.

Withdrawing from the project

Anyone involved in my research project has the freedom to withdraw from the project, if at a later date they decide that they no longer wish to be involved in it. So in asking for informed consent it is important that this freedom to withdraw is clearly explained to people.

In this context, withdrawal is not an issue, since there is no continued involvement in the project. I do not plan to interview anyone more than once. In any case, this would not normally be possible or practical: they often fail to turn up for events when their future and their liberty depend on it, so they are unlikely to turn up for a second interview just to satisfy my curiosity.

Confidentiality

Having gained people’s consent it is also vital to ensure that structures are in place which can guarantee that all the information obtained from, or about, someone remains confidential. This raises questions about what you will do to make sure that data, such as tapes or transcripts of interviews, will be stored safely and how it will be safely disposed of at the end of the process. Your research proposal should clearly explain the steps you will take to ensure confidentiality. I will store my records of interviews until after my journal has been marked, so that any questions about the source material can be answered.

Anonymity

Another aspect of confidentiality which needs to be taken seriously is the need to ensure anonymity, so that no-one can be identified as a result of what I have written in my journal. Therefore I will need to show that I am aware of the need to anonymise the results of your data gathering, and that you have realistic plans in place to guarantee that this takes place.
Anonymity is built in to the process. I will not record the names of the people I interview. In addition, most of the people we work with are only know by their ‘street name’ so, even if I recorded and used their name in my Journal, they would still be almost entirely anonymous: unrecognised by their families and the friends they have left behind.

Consequences

A research process which in some way invites people to reflect upon some painful experiences in the past, may have unexpected and disturbing consequences. So, if there is a chance that the research might cause some kind of distress to individuals or groups, then I must consider such consequences and make specific plans to provide appropriate forms of support and help.”

This is a very real possibility. The research is dealing with painful and distressing experiences, and the memory of them will inevitably be difficult at times. But this is what we do every day: people talk with us about difficult, painful and distressing events, and we help them to deal with it. They often come to us because they want to talk, and have no-one else they can talk to.