Ethics and Research into Vulnerable Groups
The BACP’s Ethical Guidelines for Researching Counselling and Psychotherapy (Bond, 2004), presently under review, open with the bold, and in my view proper, assertion that:
“The credibility and public standing of counselling and psychotherapy require that practitioners systematically and continually seek to enhance the quality, effectiveness and safety of their practice on well-founded evidence.”
And not only does the credibility and standing of our profession require well-founded evidence, our clients deserve it. The Department of Health’s Research Governance Framework (2005), equally properly, requires that:
“Whatever the context, the interests of research participants come first. Those responsible must be satisfied they have taken all reasonable steps to protect the dignity, rights, safety and wellbeing of participants. We have to be frank about risks, and businesslike about managing them.”
Between these two reasonable propositions, however, lies the riddle of the Sphinx with the accompanying threat of being strangled and devoured, or at least of having your research project scuppered if the subjects are considered to be ‘vulnerable’. Two examples, given to me by postgraduate researchers I know personally demonstrate the dilemma.
‘A’ wished to do research into the value of counselling for the fathers of children who died at or near birth. She was a medical professional who had been told by fathers in that position that they felt that their distress was not recognised. ‘B’ sought to do research with clients who were on the autism spectrum. Both were told that that the proposed participants were vulnerable and that accordingly they should seek an alternative area for research.
My own experience was similar. I had retired early from a career as a lawyer and was studying for an MSc in Therapeutic Counselling, a BACP accredited course. My particular interest was in rehabilitation counselling, which had been known to the university from the outset. Moreover, in the first year I undertook a literature review of the subject. And in Year-2 I submitted my initial research proposal: The experience of traumatic disability and the role of counselling in rehabilitation. The examiner commented that:
“Your selection of participants was clear and transparent, as was the data collection process … The questions you propose to ask have been thought through in such a way as to elicit a rich store of data … Overall, this is an extremely good start to your project.”
So far, so encouraging. The expectation was that the initial proposal would form the basis for the third year’s research so at the appointed time I submitted my draft proposal for ethical approval to my supervisor.
The proposal in outline
The study involved a combination of phenomenological and descriptive methodology, focusing on the subjects’ experienced meaning of becoming disabled, as well as investigating their overt behaviour. The research population was designed to include:
- individuals aged between 18 and 40
- who had experienced either a spinal cord injury or the amputation of a limb following trauma
- whose injury had been sustained between one and five years prior to the date of the interview
- who would have been discharged from hospital, and
- should have been in receipt of some form of rehabilitation counselling either before or since discharge.
These participants were to be recruited through relevant national charities and should have the capacity to provide full and sensitive descriptions of their experience (van Kaam, 1966, as adapted by Polkinghorne, 1989). Data-gathering was to be by open-ended, semi-structured face-to-face interviews, tape-recorded and transcribed. The object was to gather “naïve descriptions from people who have had the experience under investigation, prompted by open-ended questions” (Polkinghorne, 1989). There were to be these six questions:
- What was your pre-injury image of people with the type of disability you now have? Do you remember any specific experience or encounter with someone with such a disability?
- Select a photograph [showing individuals of the same gender as the participant and with the same disability] –
o Why did you select that particular photograph?
o Construct a brief story around the image, taking whatever approach you like in whichever way you wish. It’s not a case of ‘guessing’ what’s happening, but of using the picture as a stimulus to your imagination.
- Try to describe your emotional journey since your injury, the experiences rather than your actions or behaviour –
o Try to describe your feelings just as they were
o Please don’t stop until you feel you have described your feelings as completely as possible
- What was your experience of counselling?
- What factors have contributed (a) positively (b) negatively to your rehabilitation, insofar as they have not already been covered?
- What one thing do you feel others should know about your experience of disability?
I had shared this proposal with four national charities working either with amputees or with people with a spinal cord injury, and each had offered to help with identifying possible participants. The reactions from all four were positive, including:
A consultant clinical psychologist working in a charity supporting those with SCI: “I have to say I find this kind of thing really exciting! It could be really good”
The director of a charity supporting amputees, who thought it was “very, very useful…We do plenty of counselling but have no real evidence whether it works.”
My supervisor’s response to the draft proposal was that:
“It is possible that the [Departmental Research Ethics Committee] will simply not accept a proposal that is explicitly working with a vulnerable group. The bottom line is that it will either get thrown out simply because of this, in which case you will need to rethink completely or, which is what I hope, the adjustments I suggest below will satisfy.”
The adjustments were largely presentational, although one objection was significant and that was the use of photographs. The ‘projective’ use of images, the creative use of fantasy and ambiguity, had been intended to encourage the expression of deeper feelings (McLeod, 2003:80). Nonetheless, I accepted my supervisor’s advice and dropped that question. The decision of the Departmental Research Ethics Committee, as well as being patronizing, was perhaps predictable:
“The opinion of [the Departmental Research Ethics Committee] was that this project would cause significant distress to participants and this outweighed any potential benefits of doing it. It was also felt that this is too major a project for a novice researcher undertaking a master’s level project. He needs to get a new topic and start again. This also means that he has 2 attempts left for getting through [the Departmental Research Ethics Committee].”
Please note the wording it “would cause” significant distress, not “might cause” or “could cause”. After 18-months I was blithely told to “get a new topic”. There was no opportunity to make oral representations and, I am led to believe, the Committee’s decision was in fact a simple endorsement of a rapporteur’s recommendation. An intervention by my supervisor prompted a slight shifting of ground on behalf of the Committee, whose Chairman wrote that:
“The committee still have concerns that this study has the potential to cause distress to a participant. It also involves participants who have experienced a traumatic disability and who have had an amputation of a limb or paraplegia. [Moreover] the Committee was not set up to assess and approve projects that involve participants with illnesses or disabilities. It is more appropriate in these cases for projects to be reviewed by the NHS Ethical Committee procedures. We therefore suggest that NHS ethical approval is sought for this project.”
This was clarified as meaning that if I got NHS ethical approval the project would ‘normally’ receive Departmental Committee approval. But, of course, alternatively, I could reapply with a different proposal. I was not going to let this lie, and eventually I gained the concession that I might put my proposal to the University Research Ethics Committee which, with minor conditions, approved it (Gladwell, 2015). It is significant that that committee had a much wider membership than university functionaries. The lesson might be: persevere, be obstinate!
What is the definition of a ‘vulnerable group’?
The British Psychological Society’s Code of Human Research Ethics (British Psychological Society, 2010, chapter 3), states that research involving vulnerable groups would normally be considered as involving more than minimal risk and that special safeguards need to be in place, including having ample opportunity to understand the research. However, in chapter 10.1 it defines ‘vulnerable population’ thus:
“Vulnerable populations include children under the age of 16, people with learning or communication difficulties, patients in care, [individuals in a dependent or unequal relationship].”
‘Vulnerable populations’ are thus seen as those who suffer some long-standing disadvantage, whether that be intellectual or being in some manner dependent, or by being a student or a patient of the researcher. It does not, it seems to me, include those suffering emotional disturbance resulting from a particular event, whether that be trauma or the breakdown of a relationship. Were it to do so, most counselling clients would be ineligible. As the BACP’s Ethical Guidelines acknowledge “Much of the research undertaken in this area of work will include or be exclusively concerned with areas of vulnerability in people’s lives.” Moreover, the BPS’s special safeguards and the BACP’s good practice guidance (Bond, 2004, chapter 3.3) are no more than perfectly reasonable.
Three issues in particular arise from this experience: the nature of the application process; the role of the ethics committee; the interpretation of a ‘vulnerable group’.
Why does getting approval for a research project have to be so combative, adversarial, gladiatorial? The resulting approach isn’t so much “Let’s see if we can’t find a way through this”’, but more that of a Victorian schoolmaster seeking to humiliate some wretched pupil in order to enhance his own status. During my own journey to ethical approval, the head of department’s single contribution was to comment that I needed to learn that research was a tortuous business.
The BPS’s Code (British Psychological Society, 2010, chapter 9.2) makes it clear that a Research Ethics Committee is normally responsible for making informed recommendations to the researcher if the proposal is found to be wanting in some respect. Is not that need for informed recommendations the kernel of the problem? This should surely be an iterative process. There are two reasons, I suggest, why the role of ethics committees has been reduced to that of crude gatekeeper.
The first is, somewhat understandably, resource: time and money. But to deny these committees the necessary resources is to undermine the importance of research, even if it is ‘only’ being conducted by postgraduate students. My own supervisor conceded that my proposal represented the sort of research we should be doing. The second reason for the committees’ diminished role is fear, fear of litigation. Have universities’ lawyers advised them that at all costs they must avoid being sued? Has a parallel (in my view mistaken) been drawn with biomedical research (Hoffman and Berg, 2005) where frequent litigation could indeed have a profound effect on that research community? The way to avoid that risk is seen to be to set the bar so high that anything remotely controversial would be excluded. And the best way to do that is to encourage people to use themselves as their research subject. Problem solved. Only, it won’t produce anything of wider application, anything that is publishable, which is surely the whole object of undertaking research. Research using oneself might be safe, but it is seldom of wider intellectual interest.
What the committees should be doing is something much more constructive, avoiding gross violations by sensitivity to the more subtle ethical implications of counselling research and practice and recognizing the balancing act required around the ethical issues involved, with the aim of minimising harm (West, 2002). But that involves making an assessment of the researcher’s competence, his or her interpersonal skills, their level of tact, their level of respect. Although one might think that such skills would be an intrinsic element of a psychology or counselling course, they are qualities that cannot be taken for granted and should correspondingly enhance or detract from a proposal. Indeed, the BACP’s Ethical Guidelines (Bond, 2004, Chapter 4.3) require that the competence of the researcher to undertake the proposed research should be considered in the initial risk assessment – which then becomes another issue which can be sidelined if the researcher is his or her own subject.
An exhaustive definition of vulnerable groups is impossible, but the codes and guidelines give a sensible steer. The problem arises from the apparent desire to avoid any risk rather than to adopt West’s ‘balancing act’. Thus the approach is largely subjective – if in doubt, say “No”. In my own case, I had the support of four relevant charities but in the absence of its own experience, their support didn’t count with the departmental committee.
At the end of the day, these ‘vulnerable people’ are adults, volunteers who give informed consent, and, most importantly, people who want their story heard. As researcher ‘B’ put it:
“My clients have mental capacity so I struggle to see why giving them an informed choice about whether to participate in research is unethical. Surely it’s important to have a voice? I know my clients would be hugely offended if they were aware that they were considered inappropriate for research due to their vulnerabilities. Autism is a spectrum disorder, and it seems unfair to assume everyone is vulnerable; some of my clients have jobs and families. People with disabilities matter, their opinions matter and it seems unjust not to include them.”
This also highlights the important issue raised in the BACP’s Ethical Guidelines (Bond, 2004, Chapter 3.3.4), that consideration should be given to the impact on clients of being excluded from the research, for example, would they conclude that they are deficient in ways that may adversely affect their wellbeing? Disability casts people into a passive role, but one of my participants was able to say, “at the moment I’m the teacher, and that’s fantastic.”
What I’ve described is, of course, based on my personal experience. Whether that experience is universal I cannot say, but it would not appear to be unique (Jenkins, 2013; Goldman, 2015; Kierski, 2015). It is not the frameworks that are such an impediment to research, but the leaden, bureaucratic way in which they are applied. I do not for a single second wish to underestimate the importance of the safety, wellbeing and dignity of the participants but in seeking so assiduously to protect them perhaps ethics committees are in fact doing them a disservice. One participant said to me, “While I was waiting for you I thought, I must be mad inviting someone I don’t know into my home to discuss such a personal matter.” The fact that he and the others did, is humbling. I am profoundly grateful to each and every one of them.
David Gladwell qualified as a barrister. After 35 years as a lawyer, he took early retirement and re-qualified as an integrative counsellor. Since 2007 he has been an honorary counsellor with Oxleas NHS Trust, and for five years was an honorary counsellor with Guy’s and St Thomas’ NHS Trust, working in an artificial limb centre. He also has a private practice. He is a registered and accredited member of the BACP. email@example.com www.davidgladwell-counsellor.london
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Department of Health (2005) Research Governance Framework for Health and Social Care London: Department of Health
Gladwell D (2015) The experience of sudden disability and the rôle of counselling Academia.edu
Goldman S (2015) “Why make research so hard to do?” in Therapy Today 26(2) p22
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Jenkins P (2013) “The only way is ethics? University ethics committee and the future of psychotherapy research” in Contemporary Psychotherapy 6(2)
Kierski W (2015) “Excessive ethical demands in research” in Therapy Today 26(4) p43
McLeod J (2003) Doing counselling research London: Sage Publications
Polkinghorne DE (1989) “Phenomenological research methods” In RS Valle and S Halling (eds) in Existential-phenomenological perspectives in psychology: Exploring the breadth of human experience New York: Plenum Press
van Kaam A (1966) Existential foundations of psychology Pittsburgh: Duquesne University Press
West W (2002) “Some ethical dilemmas in counselling and counselling research” in British Journal of Guidance and Counselling 30(3) p261
Image: Andrea Yori – Big Brother is Watching