"Faith & Works" considered within Qualitative Social-Health Research; seeking a concept of Ethical Value beyond the limitations of the Bioethical Tradition. 

Introduction:

"What good is it, my brothers and sisters, if you say you have Faith but no not have Works? Can Faith save you? If a brother or a sister is naked and lacks daily food, and one of you says, 'Go in peace, keep warm and eat your fill', and yet you do not supply their bodily needs, what is the good of that? So Faith by itself, if it has no Works, is dead." Letter of James, Chapter 2, verses 14-26

- Such assertions about the supposed supremacy of affirmative actions over understanding alone have been batting around for quite some time. And, viewed like this, within the endless dance between knowledge alone and derivative beneficial intervention, much Social-Health Research may, indeed, seem "dead".

Yet "Faith & Works" remain unreconciled within Social-Health Research. Indeed, there is frequently an avowed duality of purpose at the heart of Social-Health Research.

Moreover, in many cases this unresolved tension of intent can sow a confusion of purpose and in some cases even impose a contradiction of purpose. On the one hand it is often argued that a legitimate and sufficient purpose of social science is the fostering of new understanding through the generation and testing of theories. Yet push on to the coalface of research, propped more closely as it is by concepts of Ethics, and one often finds that knowledge alone is no longer deemed sufficient. The tools of research which previously were only to gather must now also provide as well - there needs to be a "doing of good", a "beneficence". And, on top of this, we are largely expected to separate out our research from interventions or therapy. In short, as researchers, we can be in a muddle about what we are meant to be doing before we even start.

Purpose of Submission:

The last meeting of the Department of Health Care Studies Ethics Committee requested some clarification and further attention considering my proposed research on Exploring long term 'Yo Yo Dieting' via a phenomenological study (original submission attached for reference):

Over the last three months, aware that there would not be another Ethics Committee meeting for some time, I have, in parallel to my ongoing work with overweight people and chronic dieters, been re-considering my motivation, purpose, responsibilities and methods in seeking to extend my work into an academic degree context. I have found a detailed ethical consideration not only challenging but also deeply enriching. It has happened almost by chance - and this process demands that I offer no glib nor superficial answers to your points and I hope that this response may add something to the ethical approval process and perhaps also to the broader ethical debates.

Mindful that the Committee is primarily seeking evidence of ethical awareness, this will all be done with an appropriate restraint on length and references (I may develop these perspectives as a separate full paper) but still within the framework of my emerging personal beliefs, all relevant to the above points, that:

1.    There is commonly an Ethical confusion beyond the limits of a reasoned debate at the heart of Social-Health Research which does our passion a disservice:- 

2.    There is an inappropriate over-reliance on the Bioethical Tradition.

3.    There is an Academe-centric mislocation of much of the current Ethical debate. 

4.    Ethics need to move centre stage in the Research Process, beyond its current common location of minimal compliance. 

5.    There is an inescapable relationship between research and intervention/therapy which demands greater attention and acknowledgment. 

6.    A notion of "Negotiated Stakeholder Value" is appropriate.

Theme - appropriate separation of research from intervention:

I have sought to read of the experiences of previous field researchers similarly immersed in the research of phenomena they have approached with a passion not only to observe but also, in due course post-research, to influence.  Several speak passionately from the frontlines:

Researching NHS healthcare perspectives of lesbian and gay patients (James & Platzer, 1999): "As researchers we have all experienced role conflict when hearing the distressing and sometimes horrific stories that men and women tell, particularly when they are survivors of the mental health system. We have had to take care to remind ourselves that we are not there in the role of counsellor."

Again, from the same researchers: "Emotionally charged interviews that raise painful memories and feelings can propel nurse researchers, if they are not careful, into a counselling situation. Equally, they may result in needs and expectations for support, information and advice that researchers cannot meet. This can have the effect of leaving researchers feeling helpless and hopeless and the participants distressed. This is an ethical issue that researchers need to address prior to fieldwork."

And from within nursing research (Holloway & Wheeler, 1995): "Nurses and midwives have a dual role and responsibility (that of professional and that of researcher) and they may experience problems of identity."

From someone who both researches youth homelessness and provides support and accommodation (Ensign, 2003): "Because of the close engagement necessary between researcher and participant in most qualitative research, there is a greater possibility of researcher role conflict and blurring of boundaries than there is in other types of research."

These statements reveal the Instinct drivers towards the conflation of Research and Intervention (outside the particular arena of explicit Action Research) during the research period and I address below how I intend to deal with them to the benefit of my work. However, there are also very clear and strong Philosophical drivers to conflation, which, I believe, have attracted far too little attention and I shall subsequently unpack and address these.

- It is perhaps thus in explaining the temptations and processes of conflating Research and Therapy that I can best assure the Committee of my alertness to these points and my coping strategies.

The Instinct risks of failing to separate research (in so far as it can be) from interventionist urges and/or ad hoc therapy I believe to be (I have located scant references in this area):

1.      Diffusing the focus of research in terms of knowledge generation (unless pursuing an explicitly emancipatory avenue, such as Participatory Action Research). 

2.      Exposing the collaborant to significant psychological or even physical risk. 

3.      Putting the researcher potentially out of depth with regard to therapeutic competence and beyond remit in terms of stated research objectives. 

4.      Leaving the researcher with unmet need - a compelling precipitative factor in the conflation of interventionist urges with research according to each of the field researchers previously quoted.

My responses to these issues are clear:

I have been active in the field for some time (as an observer and commentator - not as a therapist; I have no formal qualifications in this area); it is specifically that I seek to develop clearer understanding to inform better the continual refinement of information/support via a charity (and to, perhaps, offer useful insights to others seeking to develop interventions) that I have engaged with the academic research process. It is fresh and detailed perspectives that I seek.

Indeed, I already have a major outlet - an active information and support charity and regular interplay with individuals - for any otherwise-suppressed instinct to place intervention before observation in the research process.

Allied to this is my explicit intention to recruit collaborants explicitly and expressly for the purposes of research participation (NOT therapy) and not to access my existing contacts. This avoids anything like the oft-reported tensions concerning the health professional as researcher or carer in relationship with the patient. On a closely related point, much of the writing on the power inequality of the researcher/researched is from the clinical trials arena, wherein lies a fear of downgraded care provision in revenge for non-participation in research. Whilst I do not believe that even my careful efforts at a co-construct of research can diffuse all power inequalities, my starting position is still profoundly different from the doctor/patient one.

Furthermore, I am not conducting this research with a personal view to re-invent the techniques of therapeutic methodologies, nor to dabble with a little from this-or-that school of counselling in my relationships with a vulnerable population. My express aim is to understand better the etiology of long term dieting behaviour, so developing a typology and for this strategic understanding to be potentially useful later....hopefully in various ways, with offerings to both practice and praxis.

There needs here to be a brief comment on the very concept of separating out Research and Intervention/Therapy. In the classical psychoanalytical tradition of giving voice to concerns - the catharsis process - it could be argued that the process itself of skillful listening can be construed as therapy. Beyond this, I for one can see how my ultimate aim to help change unpleasantness can only be shaping all of my quest. Whatever, at this stage let it be said that within the remit of this Ethical Approval process, I draw a distinction between Implicit and Explicit Intervention and am most definitely steering away from the latter within my degree research.

All that said, I believe in fact that there is in fact within the academic process a push to conflation of research and intervention/therapy which is fact considerably stronger than the Instinct drivers - but that this area of Philosophical drivers is one to which far too little attention has to date been paid.

There is a gathering awareness of the limitations of holding the Bioethical tradition as the lodestone of all health related - and, indeed, more broadly social - research: yet there also seems an ongoing opaqueness in the debate of where to ground Social-Health Ethics. (A separate but somewhat related issue Ļand one to be teased out elsewhere, is the rather loose flitting across categories such as "clinical, medical, health, social care and social" in relation to research. In this paper I am using my own term "Social-Health" in relation to my research space and believe we need to consider a more considered language.)

Ramcharan & Cutcliffe (2001) consider in detail their "ethics as process" model, whereby "There seem to be several reasons why a reconciliation between the health/medical and social research discourses is warranted. The first is simply that, despite their common interest in the ethics of research, there seems to have been a divergent evolution of ideas with lessons to be learned on both sides." Their picture of "two dissimilar discourses" comprises firstly the classical Bioethical balancing between potential research reward and individual harm, entailing formal third party review, and, secondly, in social research, a much more intuitive, iterative and ex post facto process, more premised on informal peer acceptance or rejection.

They cite the key problem of overextension of the Bioethical model as "Decision-making about the ethics of qualitative research is problematic where the research design is emergent and the balance between risks and benefits for research subjects are difficult to ascertain prior to study implementation." They further implicitly point to failings within an unswerving allegiance to a narrowly based Bioethical model by expounding in detail a battery of concepts and measures whereby the quality of social engagement with research participants is more humane and also subject to rolling review (thus "ethics as process").

In relation to their "social research" sphere, they contend that "A working knowledge of ethical considerations through reading such material appears to be seen as sufficient knowledge for its application to the research process itself by researchers wishing to enter the field. The problem with this and with lack of regulation is that a strong case can be made for the good served by any approach."

And then, when they attempt to square the circle of Bioethics and more broadly based research concerns at the "operational level", they to my mind over-reach. They assert that "the ethics as process model seems to provide a link between health and social care ethics which have travelled divergent paths up to now": I would contend that all they have done is enriched awareness of the necessity of humane research, whilst passively conceded that the "traditional notion" of beneficence v. malficence remains the ultimate moral authority.

The argument is similarly posited by Simons (2005). We are told that "Ethical practice is often defined as 'doing no harm'. In this chapter we take the view that we should also aspire to do 'good', in other words to conduct research that benefits participants in positive ways." Through a rich review of the inherent ethical complexity of research, we are told that "Ethics is a situated practice" but this stated notion of "good" remains hanging and undeveloped.

I am teasing out this point because I am experiencing from many commentators what I see as a well-intentioned but I believe ultimately tendentious line of thought and I feel it is suggesting notions of intervention/therapy into research projects to potentially widespread detriment.

It can easily be argued that doing more good than harm and conducting elegant, courteous and humane research are only proper. I agree - and, indeed, I find it hard to believe that anyone couldn't. And that's the problem - these things are necessary but, I contend, of themselves not sufficient as ethical bedrock.

The Declaration of Helsinki said things that we hardly believed needed saying in the light of things we could hardly believe had happened. As such, I believe it remains as something of a straitjacket against a broader, more credible and more useful ethical perspective.

Such guidelines embrace a normative ethics, concerning themselves with how people ought not to behave. The approach does not provide, certainly for Social-Health, a convincing notion of aspirational ethics, a concern for what we are trying to achieve.

"Doing good" is too vague (whilst the academic gold standard of knowledge creation remains too glib a catch-all). It pushes the ethics process into a linear concern between harm or health. It pressurises the researcher and research assessors into a scramble for preconceived and direct health benefit. It is all but an exhortation to conflate research and intervention/therapy. We see the evaluation laid bare on ethics approval forms - a balancing of risk and reward.

Far from calling for anarchy as a replacement, I believe that there is a subtle re-alignment available which can only benefit Social-Health's claims to legitimacy, representation and, ultimately, authenticity. And it is in this light that I have been continually refining my own project.

The problem summarises that by basing the Social-Health Research debate on the primacy of the necessary but insufficient Bioethical Helsinki tradition, the procedural rationality of mechanically "not doing harm" creates a mirror-image imperative to "doing good" mechanically.

We are talking of a linear quid pro quo - treatment, or at least a quantifiable likelihood of it, in return for risk. I contend, certainly in the case of Social-Health Research, that this sense of not taking without giving is an inappropriate measure and that it needs to be recast as a sense of not taking without creating. It introduces a much broader concept of Value into the research process, one which I am working through at the moment under a notion of Negotiated Stakeholder Value.

It is an attempt to move the debate on from limitations of the HOW, which I believe has become stalled on Helsinki, and on beyond the also insufficient but necessary additions from such as "ethics as process" and "situated ethics" (which are also confined to the HOW), into the WHY & WHAT - a questioning of fundamental values and purpose in our Social-Health Research.

I have recently encountered many proffered loci of moral authority within research, including the ongoing quantitative/qualitative grudge matches. Within qualitative research, Simons (2005) neatly illustrates the range with, "Some have suggested the ultimate recourse is to one's one conscience....Others have recommended broadening the reference point. Soltis (1990) suggests that an issue/situation be considered from three different perspectives: of the person (the researcher in this case), the profession and the public, noting the different dilemmas that occur for each. Newman and Brown (1996) offer a framework for ethical decision-making that includes intuition, rules and codes, principles and theory, personal values and beliefs and action, listing a few questions to ask of oneself in regard to each. This may appear overly rationalistic. However, given the uncertainty, complexity and finely tuned professional judgement we have to make in the 'ethical moment' (Usher, 2000), it draws our attention to a range of issues we may need to integrate into our consciousness to inform ethical decision-making in research."

I am dubious about any template which may seek to pre-sift any viewpoint's primacy and suggest that the best starting point is in fact to abstract all the potential value creation from the research. Such an approach is, indeed, trailed in The British Sociological Association's 2002 Statement of Ethical Practice. Point 1 says that a priority with researchers is "to encourage them to take responsibility for their own ethical practice" and Point 2 adds "The Statement does not, therefore, provide a set of recipes for resolving ethical choices or dilemmas, but recognises that it will be necessary to make such choices on the basis of principles and values, and the (often conflicting) interests of those involved."

This Statement stops short of questioning any fundamental right to research but it certainly moves significantly down the value road in this general direction. I have, in fact, read very little that raises the primary issue of a right to research. Ensign (2003) does, though, say "While social and biomedical research have brought improvements in all of our lives, it is important to remember that research is neither a basic right nor a necessity for society or for individuals (US National Bioethics Advisory Commission, 2001). This is probably especially difficult for academic researchers to acknowledge, as our careers often depend on doing researcher."

However, if the question were recast as "Do you acknowledge Helsinki as a baseline?", then perhaps the response as to whether there is a fundamental right to research might be quite different. And perhaps, then, it behoves us to look very closely at the overall value creation of our own projects.

By this I mean making a full declaration of all the interests served and in play in the research process.

It sparks an analogy with the great passion of my youth, rock climbing; as what we did took us into place in areas of great natural beauty, so we thought it made us Green. In fact it damaged the natural landscape and disturbed rarely accessed habitats. In Social-Health Research, as so much of it takes place at the coalface of what is important to peoples' lives, I sense a similar assumption that it is per se important. 

Both contentions, however, are sophistry.

It may - may - be OK in the context of physical landscape to say, "I'll tread very carefully and hope to do as little damage as possible" - the justification of the risk being in the enjoyment and in an explicit recognition of minimising risks involved.

It may or may not be OK to simply make a comparable statement when traversing vulnerable tracts of the human landscape. But, then again, with the sense of extra sanctity required in the respect of humans and their habitats, perhaps Social-Health Research rather needs to marshal more explicit calls to value for each expedition. I posit the notion of a Value Statement as a precursor of developing Negotiated Stakeholder Value.

Looking at all interests served can strip one startlingly bare at first, yet I have found this a profoundly enriching and fresh personal exploration of my research project.

My own Value Statement might include:

"I have sought to locate my existing and ongoing research within a university research degree framework because I feel it might benefit from third party review and methodological rigour. I seek such a degree for the personal challenge as it is in an area of great interest - and for the career opportunities, specific and general, it might enhance. A doctorate will feed over into the growing non-commercial information and support charity I founded, The Weight Foundation - and will help me circulate my writing, both unpaid and paid-for: I have a book on weight loss in mind as a medium to long term project.  I think a better developed understanding of why people spend long times trapped in apparently futile dieting cycles may help the development of better therapeutic interventions going forward, unpacking better which unproductive beliefs and behaviours to address and alterting people to the cultural context in which they diet. I think, if I develop the Charity sufficiently, there can be some progress in the destigmatisation of chronic overweight and some sharing of relief. I think if I conduct the research with dignity and genuine collaboration there can be some cathartic contribution in the process itself."

My own genuine tension points in Negotiated Stakeholder Value might then include:

1.      As I have spent a long time around dieting issues, I need to keep an open mind to the challenges and suggestions of my supervisors and existing academic commentators. This is a negotiation with my academic peers' beliefs and interests.

2.     Despite all the distance I have theoretically assembled, I must always be vigilant that I am not enticing research participation through a dangled carrot of help. This is a negotiation with my collaborants' interests.

3. Likewise, I need to be mindful of any history or signs of significant depression or mental illness amongst collaborants and always err on the side of caution. This is a negotiation with my desire to see the research well-populated (and hence also includes an explicit and real awareness to tread carefully and with respect amongst potentially vulnerable people).

4.      I must not rush my research, nor overstate it, nor exploit it inappropriately in the context of any commercial activity. This is a negotiation with myself about keeping enthusiasm in check and keeping appropriate Chinese Walls across the various areas of my life.

-      I don't believe you can "do ethics a la carte"; you either buy-in to a root and branch assessment of WHAT is going on, or you are not being ethical.

I'm happy to show anyone the various interests and tensions at play in my own project and I am happy to commend it you as such. I think I am taking a realistic declarative approach which has certainly added great clarity and value to my own research intentions - and thus avoided any temptations to overstate potential beneficial outcomes.

I'm comfortable with my rationale - my "Faith" - and hopefully realistic with my "Works" and that is perhaps now a lot closer to a real reconciliation. At the very, very least, any urge to conflate research and intervention/therapy has been well and truly buried. I have found that notions of getting through ethics and on to the real research abound. I am advocating a new feel to the research project approval process, as I have now experienced the benefits of regarding the ethics process not as a filter reluctantly plugged on to the spout of the research funnel when all else is completed but rather as the funnel itself.

There is an interesting quotation I have come across in a couple of different locations; "Some of the most intractable ethical problems arise from conflicts among principles and the necessity of trading one against the other. The balancing of such principles in concrete situations is the ultimate ethical act." (House, 1993).

Under the concept of Negotiated Stakeholder Value I would actually push it a stage further - if the negotiations are clearly going badly, then the ultimate ethical act is simply not to do it.

There is one other strand of thought I wish to touch on briefly, also relevant to the key issue of discussing drivers to research/intervention & therapy conflation.

This is what I have seen as an academe-centric mislocation of much of the current ethical debate. There are clear tensions between researchers and an increasingly ethical-approval driven academic research world. There are two strands to this resentment, one of which I initially shared. The first is the general accusation of managerialism levelled at those accused of constraining academic freedoms and the second a more specific charge of managing methodological approaches.

In the first instance, in an increasingly litigious environment, I have no issues with being second-guessed by an institution whose degree badge I wish to earn not being brought into disrepute or worse by my crass recklessness! I think to argue differently is preciousness. We overtly solicit the critique and approbation of our peers over our outputs, so why should we baulk at their inputs before we begin? There is a raw freedom, ultimately, to research how you like within the strictures of the criminal law - it just doesn't happen to exist within institutions responsible for their broader reputation and budget.

The second issue, that of methodological prescription, has vexed me much more and only recently have I reached personal comfort on my desire to continue within this particular paradigm. To date I have not been overly captivated by purist Grounded Theory, happening to believe that a hope for a genuinely empty mind is an overstatement of the need for a reflectively open mind. However, there is no doubt that the current academic degree acceptance process of producing a richly fleshed-out proposal of aims and methodologies in advance of commencement does introduce a deductive format, whilst many may prefer a stronger element of induction.

When honing a proposal in this prescribed fashion, there are clear temptations to "talk-up" the potential treatment impact of the proposal, leading to the previously rehearsed tendencies to conflate research and therapy.

I found comfort in the Department of Health (2001b) draft document of ethics committees statement that "Whilst the nature and scope of research may be changing, the necessity for a prior favourable ethical opinion before any research may be started remains central to Research Governance."

This flags the essentially provisional nature of an initial ethical assessment. With no assumption of willfulness of deviation, it allows the researcher perhaps to view the initial proposal more as a predictive quality threshold, showing personal commitment and competence, putative thought and research processes, antecedents and references, potential novelty and possible lines of inquiry. As such this an enabler to good research, not a straitjacket.

Research freedom and good research, ultimately, do not depend on the non-observance or otherwise of academic procedural necessities - the way lies in an all-pervasive and continuous appeal to Value, irrespective of any institutional attachment or particular phase of the research project. The exploration and reconciliation of "Faith & Works" is the deeply personal responsibility of the individual researcher.

Honesty, introspection, perspective, peer review, stakeholder appreciation, value consideration - these are not obstacles to freedom. Indeed, they are very  much preconditions to freedom and good research and are absolutely central to standing proud against challenges to our legitimacy, dressed, for once, in our own ethical armour.

Ensign, J. (2003) "Ethical issues in qualitative health research with homeless youths." Journal of Advanced Nursing, 43 (1), p.28-42.

Holloway, I. & Wheeler, S. (1995) "Ethical issues in qualitative research." Nursing Ethics, 2 (3), p.223-232.

House, E.R. (1993) Professional evaluation: social impact and political consequences. Newbury Park, Sage.

James, T. & Platzer, H. (1999) "Ethical considerations in qualitative research with vulnerable groups: exploring lesbians' and gay men's experiences of health care - a personal perspective." Nursing Ethics, 6 (1), p.73-81.

Ramcharan, P. & Cutcliffe, J.R. (2001) "Judging the ethics of qualitative research: considering the 'ethics as process' model" Health & Social Care in the Community, 9 (6), p.358-366.

Simons, H. (2005) in: "Ethical responsibility in social research", Piper, H. & Simons, H., in: Research methods in social science,  Somekh, B. & Lewin, C. (eds) London, Sage.