The Ethics of Working with Vulnerable People
by Paul Hazelden

Introduction

As part of the preparation for my MTh dissertation, I had to do a considerable amount of work on the ethics of my proposal.

The problem was not that I planned to do anything unethical, but that I planned to talk with people who are not normally the subject of academic research. As a consequence, the standard ethical guidelines made assumptions which did not apply in my situation.

To help others who may find themselves with this problem, I offer this short discussion. In each section, I first include the 'Ethical Guidelines' as provided by the college, and then give my response.

This material was developed in discussion with my tutor at Spurgeon's College over the course of 2008.

Ethical Guidelines

  Informed consent

"It is important to ensure that anyone who is being interviewed has given their informed consent to be included in your 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 your research gives formal, written consent. So your research proposal should 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 your start interviewing people, or observing the behaviour of a group of people."

I have spent most of the past few months working on the ethics of informed consent. If I had taken the Ethics module, I would be strongly motivated to make 'The Ethics of Informed Consent' the subject of my dissertation.

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. Neither assumption holds true for many 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 other than, for example, "Male, mid-40s".

I do not intend to ask them to sign anything for two reasons. Firstly, many are illiterate, so a signature would have no ethical value. And secondly, asking for a signature would give a very unhelpful and misleading message.

Asking for a signature would suggest either that I am planning to act on their behalf in some way (in which case, they will want to know what they will be getting as a result of the interview) or that I am possibly going to harm them in some way and need the signature to protect myself (and if they might be harmed, they will want to be compensated - if possible, up front). The truth is that they will neither be helped nor harmed, but I doubt I will be able to convince them of this if I ask for a signature.

Our clients 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, they could only be identified by people who already know the stories, and most of these people are very unlikely to be reading a theological dissertation. We struggle to get most of them to read short leaflets that are intended for their use and directly relevant to their circumstances.
• Secondly, I do not intend to use the distinctive stories within the dissertation. 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.
• And finally, many of the people I interview will no longer be around by the time the dissertation is published: a few may have died, more are likely to be in prison, and many of the rest are likely to be a long way away, either in treatment or trying their luck in other cities and using different assumed names.

  Withdrawing from the project

"Anyone involved in your 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.

If anyone changes their mind about allowing me to use what they said in the interview, I will probably be able to identify from memory which set of notes relates to which individual, and remove them from the project. But I don't anticipate anyone remembering their interview much past the following day, so there is only a very remote chance of them thinking about it, remembering what was said, and changing their mind about allowing me to use the material.

  Minors

"If your research project involves working with children, then the question of informed consent becomes much more complicated, because minors may not have sufficient life experience to enable them to give genuine informed consent to be involved in the project. In such circumstances it may be acceptable to have written consent from someone who is legally able to act on behalf of the child."

I will not be interviewing minors, so this is not an issue.

(I note in passing that it only 'may' be acceptable to gain written consent from "someone who is legally able to act on behalf of the child." Two considerations spring to mind: if it is not acceptable, how do you ethically do research with minors. Perhaps some research should not be done? But in such cases, I would hope that it was prevented before you get to the stage of considering the details of informed consent. And, secondly... these are supposed to be ethical guidelines. You can't just say that something may be acceptable. You either have to say whether it is acceptable, or say how I find out - who has the authority to make a decision, for example.)

  Vulnerable Adults

"In a similar way, research amongst people who are vulnerable, 'because of their social, psychological or medical circumstances', requires sensitive handling. Once again it may be necessary to have written consent from someone who is legally able to act on behalf of the vulnerable person."

My target population group consists of vulnerable adults. But very few of them have anyone who is able to legally act on their behalf, and of those who do, very few keep on good terms with such people for long enough to arrange a meeting. And, quite honestly, the few that I might be able to arrange a meeting with, will have much better things to do than to meet me to discuss the ethics of how I might use what their client tells me about how they cope with suffering. Such a meeting would benefit neither them nor their client, so it is unlikely to be a high priority.

If I were doing research about a drug which might make some large company millions of pounds, the situation might be different. But I'm not.

However, we are working with these people every day. We are often talking with them about very difficult subjects. We know about the need for sensitivity. Our work is successful only because we are capable of talking with vulnerable people about difficult subjects in a way that both builds relationships and achieves results.

We are trusted because we work with the highest ethical integrity, even when this frustrates or annoys our clients or the professionals we deal with on their behalf. From the perspective of our clients, these interviews will be a part of their dealings with Crisis Centre Ministries, and they will have the same expectations and be shown the same consideration and sensitivity that they are shown in all their dealings with us.

  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."

Confidentiality is a vital aspect of the work we do. But it is not a major issue here, because I will not be recording who said what, and I will not be recording the personal details that could identify individuals.

I will store my records of interviews until after the dissertation 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 you have written in your dissertation. Your research proposal, therefore, will need to show that you are 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.

"There may be some cases where it may be neither possible nor desirable to provide total anonymity. If the dissertation is a study of the leadership approach of a well-known Christian leader, and this person has given you permission to write about them, then it would be entirely appropriate to identify them openly in the dissertation."

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 dissertation, 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 the researcher 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.

All the usual approaches will be applied, and the usual resources made available; and while this is not perfect (the aim of this research, after all, is to improve what we can offer in this area) it is still good enough for the people we work with.

We need to bear in mid the possibility that, in going beyond the usual topics of identifying what has happened in the past and helping people cope with it, into questions about how people have tried to help in the past, we may uncover further areas of pain and frustration. But this, too, is familiar territory ("Even the people who were supposed to be helping me were incompetent and uncaring...") so I do not anticipate uncovering anything significantly different from the usual issues we are used to dealing with. If anything does arise, we have access to trained counsellors who can work with the people concerned for as long as is needed.

  Sensitive Internet Sites

If the proposed research involves accessing sensitive or controversial websites, then the University will need to be assured that ethical considerations have been scrutinised very carefully and that nothing illegal will take place.

I am not planning to make use of any Internet sites containing sensitive or controversial material.

  Form of Consent

This is my intended 'Form of Consent'.

I am doing a study which looks at how we help people cope with suffering, and how we might do a better job of helping them cope.

I assume you have experienced suffering, you have asked questions about it, and some people have tried to help you by answering some of those questions. I would like to know which answers you have found to be most helpful.

I might include in the study a brief description of things that have happened to you; but nobody else will know, from reading the study, that they happened to you.

I am going to write down what you tell me. If you would like to know what I have written down, I will photocopy my notes for you to take away at the end of this session.