GETTING PERSONAL: ETHICS AND IDENTITY IN GLOBAL HEALTH RESEARCH

Abstract

‘Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen’s (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns.

INTRODUCTION

Today, in the global health arena, researcher identity matters more than ever. In the wake of several recent and unfortunate controversies involving multinational clinical trials, local trust and support for developing-world health research emanating from the developed world are at a historic low.¹ Even the most globally marginal communities today have access to knowledge, information technologies and political support in the West, whereby they have increased their awareness and empowered themselves to demand their rights as research participants. In this global context, researcher identity is a lens through which research communities and participants actively call attention to the ethics – and particularly the justice – of global health research.

Recent media depictions of foreign researchers associated with the pre-exposure prophylaxis (PREP) trials in Africa and Southeast Asia illustrate just how contentious research identity can be. Funded by the US-based National Institutes of Health (NIH), the Bill and Melinda Gates Foundation, and the Centers for Disease Control (CDC), the PREP trials involved multinational testing of the drug, tenofovir (Viread), for its potential to reduce the risk of HIV infection.² The drug showed considerable promise in earlier tests, and one of trial’s design strengths (ethical as well as scientific) was that it included countries and at-risk populations in both the developed and developing world. Yet, with support from activist groups in Europe and elsewhere, the PREP trials were opposed and halted in host countries that included Cambodia, Thailand and Cameroon. The damage done in these countries to the trials themselves and the climate of trust in clinical science has been described as profound.³

At the height of the controversy, traditional and electronic media in both the developing and developed world resorted increasingly to researcher identity as a lens of critique. Particularly illustrative is a newspaper cartoon published in 2005 in La Nouvelle Expression, a French language daily published out of Douala, Cameroon’s largest city. The cartoon shows an image of a portly white male aiming a syringe at the buttocks of a black woman, who asks over her shoulder: ‘Doctor, what if I get AIDS after you’ve shot me up with your tenofovir?’ The man responds: ‘You’ll take care of it yourself. After all, you’re the one selling the booty!’⁴

The cartoon was not alone in presenting this scathing identity profile. Dozens of similarly critical media representations and reports published in Cameroon, Cambodia, Thailand and elsewhere hounded the PREP trials between their inception in early 2004 and their premature termination in some regions a year or more later.⁵ As a result, scholars have concluded that negative media reporting was largely to blame for the unravelling of the PREP trials.⁶ In a similar vein, observers have pointed to the potential for even the most promising research to be undermined by ‘substantially different but equally compelling accounts of an event.’⁷ These explanations deserve careful attention in the effort to understand exactly how and why international health research efforts can flounder. Yet, the tenofovir case also bears witness to the poorly understood role in research of differing accounts of persons and identities, and not just specific events.

BACKGROUND AND AIMS

Researcher identity and its impact on research processes and outcomes has been a key focus among anthropologists, sociologists, human geographers, feminists and other scholars for some time.⁸ Much of this work is driven by a deeper interest in power and representation in research, and with the question of how research data and scientific processes more generally are shaped by virtue of whom and what researchers claim they are, and what they do. The ethical dimensions of this deeper interest in epistemology have been acknowledged, to some degree.⁹ In particular, the underlying principle of ‘respect for persons’, in research, has been tied to questions of researcher identity and representation. The anthropologist Margery Wolf alludes, in an important way, to this principle when she writes: ‘We run the risk of patronizing [research participants] if we do not recognize … how their reactions to us fundamentally affect the knowledge we are able to glean’.¹⁰

However, few social science, or other studies for that matter, including in the field of bioethics, have attempted in some systematic way to organize thinking on the ethical dimensions of researcher identity in international health research. This lack of an organizing effort has had the unfortunate effect of making researcher identity and its associated ethics seem bewilderingly random, diverse and situational, and thus largely beyond the conceptual and practicable control of individual researchers. In this paper, we attempt a partial organization of the ethics of researcher identity by using a number of concepts that have spurred clarity and progress in other areas of research ethics. In particular, we focus on the distinction between procedural ethics and ethics in practice.¹¹ ‘Procedural ethics’ refers to the formal regulations and review processes for research with human participants, while ‘ethics in practice’ include the nuanced, everyday ethical issues that arise in research and which may not be addressed in procedural ethics. As we intend to show, researcher identity is likely to fall into the ethics-in-practice category, which Guillemin and Gillam characterize as constitutive of ‘ethically important moments where the approach taken or the decision made has important ethical ramifications, but where the researcher does not necessarily feel himself or herself to be on the horns of a dilemma.’¹²

We also introduce the twin concepts of symmetry and asymmetry in how researcher identity is perceived. That is, we consider what happens, ethically speaking, when researcher and community perceptions of a researcher’s identity are either in agreement (i.e., symmetrical) or in conflict (i.e., asymmetrical). When seen as occurring on a continuum, these are useful concepts for grasping the potential contentious and shifting nature of researcher identity.

Finally, we look towards recent work on ‘ethical mindfulness’ in order to identify some of the ‘best practice’ implications of this focus on research identity. Through our discussion and our illustrative cases, our goal is to suggest that the ethics of researcher identity, while complex and to some degree situational, should not be thought of as random, completely context-specific, or – most importantly – beyond the capacity of researchers to grapple with and manage effectively.

While inherently challenging, the issues surrounding researcher identity are a fundamental part of the research enterprise, particularly in the global health context. We do not wish to claim that this is equally true for all kinds of research. In some global health research, a lead or principal investigator may rarely, if ever, make an appearance in the research setting, opting instead to defer local activities to collaborators and research staff in the host country. In other kinds of research, such as community-based participatory research (CBPR), the investigator(s) may spend protracted periods of time within a research community. In traditional anthropological research, in turn, a researcher may spend many months or even years living and working in the community of interest. Among other variables, such as their choice of methodology and their research design, these different traditions place researchers into different relationships with their host communities. Nonetheless, we maintain that all global health research has a visible ‘face’, be it that of a foreign investigator, a local scientist and collaborator or a hired staff member. This face comes to represent a given research project by way of a subject’s associations, claims to power and knowledge and ascriptions of race, gender and culture. This paper is an effort to organize thinking on how this composite face reflects and affects the research enterprise and its underlying commitment to ethics.

Researcher identity: from procedural ethics to ethics in practice

The United States (US), other developed nations, and a growing number of developing nations have increasingly elaborate systems of regulation and governance aimed at protecting human research participants. In the US, these amount to a legalistic system of review, ongoing scrutiny and shaping of research, that increasingly dictates what researchers ought to care about with respect to the ethical design and conduct of their research. By implication, there is little incentive from a compliance standpoint for researchers to care about things that this system does not explicitly require or address, which, as it happens, largely includes the question of researcher identity. That is to say, there are few regulations or formal procedures in US human subjects protection programs to prompt interest in even the most basic issues of researcher identity.

This includes the basic issue of what or how much researchers ought to tell prospective research participants about themselves. According to our assessment, the closest the US system comes to this issue is in federal and institutional requirements that research consent documents specify the name of the principal investigator(s) and their institutional affiliation, contact information and funding source (if applicable).¹³ Interestingly, we have been unable to locate any official explanation as to why this information needs to be disclosed to prospective research participants. One can speculate, of course, that this need is grounded in the Belmont principle of respect for persons, and, beyond that, in the more general, moral claim that people ought to be upfront and honest about who they are and from whence they come.

Beyond US regulations, there are some international guidelines pertinent to researcher identity. For example, the Council for International Organizations of Medical Sciences (CIOMS) stipulates in Guideline 5 of its International Ethical Guidelines for Biomedical Research involving Human Subjects that individuals be told: ‘whether the investigator is serving only as an investigator or as both investigator and the subject’s physician.’¹⁴ A fundamental identity issue underlies this requirement, namely the potential for therapeutic misconception to occur in situations where prospective or actual research participants confuse the goals of research with those of medical care.

While these and other requirements go some way to recognizing the need for openness and transparency visà-vis researcher identity, they have limitations. One immediately obvious limitation is that they require only a ‘bare-bones’ disclosure of identity-relevant information, and not any more substantive information aimed at clarifying the implications of certain researcher affiliations and funding sources, for example. How meaningful it is to provide people, particularly in a global research context, with only the name of the researcher’s home institution or research sponsor is open to question. Further, both the US and CIOMS procedural requirements are restricted to the informed consent process and not to other time-points in the research process, including any critical prior moments during which a researcher first meets and introduces him- or herself to prospective research participants or communities. Arguably, it is during these initial meetings that a reasonably full and transparent disclosure of a researcher’s name, affiliation, and other information may be most important and meaningful to prospective research participants. Lastly, in many research projects, it is often a designate such as a research coordinator or staff member who undertakes the consent process for the research, and not a principal investigator. As a result, there is the potential for prospective research participants to be unclear or confused about names, affiliations and other information that allude to individuals not directly involved in the consent process per se.

Because of the narrow confines of procedural ethics in this respect, it is therefore largely up to researchers to decide when, and what personal information ought to be disclosed to prospective research communities and participants. Thus, questions of identity disclosure necessarily fall largely into the realm of ethics in practice. However, there is a key caveat: procedural ethics, including informed consent processes, are rooted in moral principles, including respect for persons, which directly bear on the decisions that face researchers with respect to identity disclosures. Thus, in the realm of ethics in practice, it is still the principle of respect for persons that is operationalized through the provision of information that aids prospective research participants in making an informed, independent and deliberate decision about whether or not to participate in the research in question. This principle can, and should, drive a researcher’s decision to be open and transparent about elements of their identity or affiliation that may make a difference in the decision-making process prospective research participants will engage in with respect to their participation in, or support of, the research.

At the same time, research contexts, both large and small, shape the meaningfulness of how researchers act on the principle of respect for persons vis-à-vis issues of identity and affiliation. Larger contexts can include developments on a global scale as illustrated in the case of our own research, which we started in South Africa just as the US-led invasion of Iraq began in 2003, an event considered by many people in South Africa as imperialistic and morally unjustifiable. For the South African community we hoped to conduct research in, having an opportunity to question our views on this event, and on American foreign policy in general, was important for establishing grounds for trusting and supporting us, and, by extension, our research. Thus, apart from any other reason, it became ethically and practicably imperative for us to disclose with immediacy and frankness that we were researchers based in the US and that our research was being funded by US sources. Apart from affording the community the chance to evaluate us on the basis of our ties to the US, this transparency also allayed our own concerns that current world affairs might negatively impact our research. (Community members who expressed opposition to the invasion of Iraq were also quick to reassure us that their opposition was directed at the Bush administration, and not members of the US public at large.)

Real-world issues can also affect the ethics of researcher identity on a cultural and interpersonal scale. For example, researcher identity can be shaped in the context of culturally informed observations that individuals make with respect to the researcher, given their skin color, gender, style of dress, language proficiency, accent or other traits. In our own research in South Africa, which we carried out after emigrating to and settling in the United States, community members in South Africa concluded well before we had any opportunity to speak to the issue of our ‘dual’ identities that we were South African. Our obvious South African roots, including our still-strong South African accents, led them to this assessment. Similar ‘preliminary’ assessments of researcher identity and affiliation have been reported by other international researchers.¹⁵ Importantly, these assessments set the tone for the ethical issues and decisions that face researchers with respect to what they ought to disclose about themselves. Foreign ties have the potential to play a key role in the deliberative process whereby communities evaluate whether or how much to support and trust the people behind the research. In our case, we needed to act decisively and consistently to inform the community that we were not strictly South African in our affiliations, in order to afford them this variable for deliberation.

Thus, part of our process of seeking approval and support for our research in South Africa was to invite community stakeholders to comment on our foreign ties and the issues these ties might raise for the community. As a result, questions were asked about our long-term goals for the research, how long we would be physically present in and directly accessible to the community, and whether we could leverage other resources in the US to help the community to meet needs other than those we had specifically come to study (the need for preventing cervical cancer). Properly embedded in the context of community engagement, identity disclosures can thus empower communities to better inform themselves about the research and to dialogue with researchers about the community’s concerns and needs.

It is in this fuller sense that disclosures of identity and affiliation constitute an ethically important ‘moment’ in the ethics of practice surrounding international research. This moment is recognized in procedural ethics sources in a very limited way, through consent procedures requiring disclosure of certain bare-bones information about the researcher and his or her affiliations and sponsors. Yet, as we have argued, consent processes are typically conceived and implemented in too narrow, too late and too superficial a fashion to permit the degree of timing, dialogue and feedback necessary for a truly meaningful disclosure of researcher identity and affiliation. At the same time, consent processes are rooted in a principle of respect for persons, which also supports these fuller, more timely efforts to open up to community scrutiny and discussion of key information about researcher identity and affiliation.

ORGANIZING THE ETHICS OF RESEARCHER IDENTITY

As has already been alluded to, researchers have elements of their identity and affiliation ascribed to them, which may or may not accord with their own perceptions or assessments of who or what they are. Moreover, multiple and overlapping identities may be ascribed to researchers. For example, Pini describes how in her sociology research in Australia her gender, cultural background and family history led her to be perceived as farmer, daughter, Italian-Australian, ‘nice country girl’, and woman.¹⁶ The anthropologist Michael Madison Walker describes how in his fieldwork in Sussundenga, Mozambique, he was variously considered a priest, teacher, Peace Corps volunteer, development worker, adopted son, wealthy foreigner, spy, friend, neighbour and finally, researcher.¹⁷ In our own research in South Africa, we were variously perceived as rich Americans, local South Africans, American-South Africans, professors, doctors, service providers, relief workers, fictive ‘sons’ and ‘daughters’ and cancer researchers.

Thus, researcher identity presents not just the potential for concord or discord between researcher and community perceptions of who or what a researcher is, but can also take the form of a multiplicity of identities that can seem overwhelmingly diverse and difficult to predict and control. The notion of symmetry in how researcher identity is perceived constitutes one way of subjecting this array of interpretations to some organization. The starting premise here is that researcher identity operates at the level of perception, that is, how the researcher is perceived based on any number of verbal, nonverbal, physical and other informational cues. These perceptions can be symmetrical in the sense that they are mutually shared and roughly agreed upon by both the researcher and prospective research participants, or communities at large. By contrast, asymmetrical perceptions of researcher identity are characterized by dissimilarity and disagreement. Importantly, symmetrical and asymmetrical perceptions of researcher identity should be placed on a continuum and seen as evolving, and subject to change. A key point we hope to make next, through two specific case studies, is that qualitatively different ethical issues can be mapped onto this continuum. As a result, researchers may see more clearly that researcher decision-making plays a key role in shaping these ethics, and that the ethical dilemmas involved tend to be cumulative and evolving, and not static or categorical. We discuss two illustrative cases in turn.

From symmetry to asymmetry: the case of the mascot researcher

One key source of ethical tension in research is situations in which perceptions of researcher identity grow asymmetrical after starting out in a mutually agreeable manner. Examples might include situations in which a research project physically, socially or psychologically harms – or is perceived as harming – its participants, or where previously undisclosed or poorly understood design elements of the research are met with community surprise and concern. The case of the PREP trials in the Cameroons, which by all accounts were preceded by a great deal of effort to introduce symmetry into the researcher-community relationship,¹⁸ may well be highly illustrative of this potential for symmetry to de-evolve, either temporarily or irrevocably.

Another similar situation is underscored by the case of Laura Adams, an anthropologist working in a remote community in Uzbekistan.¹⁹ Adams’ research starts out with a highly positive degree of symmetry around her identity. Being American and by extension Western, Adams has a powerful effect on the community, which is trying hard to overcome its geographic and political isolation in the region and the world at large. Consequently, she is warmly welcomed by the Uzbekistani she meets, and enjoys instant access to and rapport within the community. She is even introduced to highly-placed Uzbekistani officials, whom she writes, she may never otherwise have met and been able to interview had it not been for the minor celebrity status bestowed on her by the community. In return, the community enlists Adams as a ‘mascot’ for demonstrating to other communities and community leaders in the region how it is gaining international attention and recognition. By all accounts, perceptions of Adams’ identity as an American and Westerner are perfectly symmetrical and advantageous to researcher and community alike. But, for Adams at least, this symmetry begins to unravel rather quickly.

Her research time is dominated more and more by the community’s demand for her to appear socially and publicly. She ‘reluctantly’ makes local television and radio appearances honouring her visit. She is repeatedly referred to as ‘our guest from America’, a phrase she begins to ‘dread’.²⁰ The problem with all this tribulation, Adams writes, is that it not only drains time from her research, but also erodes her sense of professional identity and control. People are not interested in her or her research specifically, but in her potential to serve only as a ‘mascot’ in a regional game of political one-upmanship that she has yet to understand with any depth. Her identity as a person or a researcher seems irrelevant to the community. Moreover, Adams begins to question the appropriateness of her decision, albeit a relatively passive decision, to benefit from her local celebrity status. The price she must pay, it would appear, is to serve as a ‘pawn’ in a community agenda she knows very little about and from which it is becoming increasingly more difficult to extricate herself. She begins to feel ‘like I had lost control over my professional identity.’²¹

Adams’ case highlights a number of assumptions and ethical tensions surrounding researcher identity in the global context. Most obviously, there is the assumption that communities will recognize and care, in some way, about the researcher as a person, or, failing that, as a professional. The realization that a community may care far more about what the researcher represents or symbolizes by way of their national origin or ties, may come as a shock and source of frustration or humiliation. Of course, this assumption fails to recognize the powerful and iconic nature of Western identity, which may understandably override other elements of the researcher’s identity given the massive gaps in global wealth and power that largely separate the developed and developing world.

Researchers from the developed world need to recognize that they have a degree of symbolic capital that may be instantly obvious and appreciable to communities struggling with social, political and economic isolation and marginality. This symbolic capital is an invisible but powerful resource, that the researcher has an ethical obligation to consider and be mindful about, in terms of how it may be utilized to gain community access and support, and to shape the terms of the researcher-community relationship. Reciprocal arrangements may spring up around this social capital, as in Adams’ case, where both she and the community benefited from the importance attached to her identity as an American and a Westerner. These arrangements disguise a host of ethical and practicable issues, including the question of how the research will be impacted if the researcher has become enmeshed in complex social and political agenda. People’s responses to a researcher’s interviews, for example, may be heavily coloured by their perceptions of the researcher’s entanglement in these local social or political agenda. In turn, the community and the researcher’s relationship with the community may be adversely impacted if the researcher decides to extricate him- or herself from these agenda. Such extricating efforts risk confusing or offending communities and plunging the researcher-community relationship into asymmetry.

We have spent some time discussing Adams’ case because it illustrates so vividly the linkages between perception, identity and power in shaping ethically important moments in global research. While the extended anthropological nature of Adams’ work undoubtedly affected the experiences she reports on, we would argue that the potential to under-appreciate the role of perception, identity and symbolic capital faces all international researchers regardless of their length of stay in the host community. In fact, the potential for ethical tensions to arise around perceptions of foreign identity is likely to be even greater among researchers and communities who are able to spend significantly shorter amounts of time getting to know each other and establishing a solid basis for mutual understanding and rapport.

Asymmetries, accountability and justice

Another highly consequential asymmetry is evident in situations where community interpretations of what a researcher is and does differ strongly from the researcher’s own interpretations. Take, for example, the US-based anthropologist Michael Madison Walker, who writes of being misperceived as an agricultural extension officer (AEO). Walker attributes this misperception to the time he spent ‘with people in their fields, identifying land and water resources, documenting crops grown, gathering information on local markets, and facilitating interviews and focus group discussions around the themes of access to land and water, agriculture and development.’ ²² Consequently, many people thought Walker was in Sussendenga to help improve local ‘agricultural techniques, conduct farmer training seminars, or offer … agricultural inputs such as seeds, fertilisers, watering cans and water pumps.’²³

One troubling aspect of such relatively common experiences is the degree to which community members attach significant hopes and expectations to misunderstood researcher roles and identities. Apart from their potential to lead to collective disappointment, these hopes and expectations can adversely affect the basis on which community members decide to participate or to continue participating in research. Procedural research ethics dictate that prospective or active research participants should be able to evaluate their participation or continued participation in research rationally and free from undue influences such as a climate of quid pro quo. Clearly, such a climate is very likely to prevail in a situation where a researcher is seen also as a key resource provider. This type of situation is similar to the atmosphere of confusion and potential coercion surrounding clinical research settings, in which there is ambiguity with respect to a physician/investigator’s commitment to the other-oriented goals of research, on the one hand, and the patient-oriented goals of clinical care, on the other.²⁴ Unrealistic patient expectations with respect to the nature and outcomes of the research may follow with the result that people participate or continue participating in research without adequately weighing the risks, benefits and other elements of participation. The principled goals of informed consent are unlikely to be met in such situations.

This is one reason researchers may – and should – be troubled by expectations that follow in the wake of misattributed identity. These expectations may also be highly challenging to manage from both a moral and practicable standpoint. Walker hints at the practicable side of this challenge when he writes that his efforts to undo the misperception of him as an agricultural extension officer were successful ‘[o]n most occasions, after some lengthy discussion’.²⁵ Whether there were occasions on which he was not successful at undoing this misperception or what the ramifications of these occasions might have been is not clear from Walker’s writing. It is also unclear exactly what evidence figured into Walker’s determination that his efforts to explain his true identity – that of researcher and anthropologist – were understood and accepted. Lest we unfairly press Walker on this point, we should note that researchers everywhere would almost certainly have great difficulty managing these practicalities. Given the lack of explicit guidelines on how to address these types of situations, researchers may struggle to come up with a systematic way of countering misperceptions of themselves, and, just as importantly, of reliably determining whether these counter efforts have been successful. Arguably, one effective approach would be for researchers to be pre-emptive and to meet with key community stakeholders well before commencing their research, in order to lay the groundwork for demonstrating transparency and achieving mutual understanding and trust. However, this is not always possible for international researchers with limited budgets, heavy annual teaching schedules and other constraints, which may dictate a quick and less-than-ideal succession of initial community engagement and research activities.

Misunderstood or misattributed researcher identity raises another, deeper ethical conundrum: on what moral or ethical grounds do we as researchers decide to remedy the misunderstanding or misattribution? One answer might be that, assuming we are aware of the situation, there is an inherent rightness in our efforts to remedy false impressions that others may foster of us, particularly if these impressions are of something as fundamental as who we are. If we are aware of these impressions but do not do anything about them, we are complicit in telling a lie about ourselves. This alone may be one very legitimate reason why researchers are – and should be – motivated to chase down misattributed researcher identities. Another reason lies in the harm that may be inflicted on community trust, the research relationship, and even the goal of furthering progress in an area of research by a misattributed identity that is allowed to spread unabated. Rectifying a misattributed identity therefore could be viewed as a consequentialist act needing to be carried out so that the best interests of all can be upheld.

Either one of these reasons would suggest that the decision to go out and remedy a misattributed identity is a good and relatively easy one to make. However, the decision grows exponentially more difficult if there is a basis for viewing the hopes and expectations associated with a misattributed identity as being at some level legitimate or valid. We would argue that there is such a basis if one takes into account that while a community may be wrong about a researcher’s professional background or credentials, their assessment of the researcher’s capacity to assist the community in one way or another may be relatively logical and accurate. Consider, for example, that while the farmers of Sussundenga were wrong in thinking that Walker was an AEO, the hope or expectation that he could help them agriculturally was entirely consistent with the interests, knowledge and expertise Walker displayed by ‘spending time with people in their fields, identifying land and water resources, documenting crops grown, gathering information on local markets, and facilitating interviews and focus group discussions around the themes of access to land and water, agriculture and development.’²⁶ In this light, a community’s assessment of the theoretical capabilities of a researcher may be relatively accurate even if the community in question is mistaken about the researcher’s professional status and background.

Another key factor to consider is the actual nature of the hopes or expectations that communities are associating with researchers aka resource providers. In Walker’s case, these fell roughly into two categories: (1) things (i.e., researcher expertise, training or advice) the researcher potentially could provide without investing time, cost or other resources to an extent that adversely affects the goals of the research, and (2) things (i.e., equipment or other material resources) he or she could not provide without adversely affecting the goals of the research. These categories assume, of course, that research is an ultimate good, the worth of which exceeds any other good deeds that the researcher potentially could do over the course of the research. Alternatively, the research could be viewed as a good of equal or less value compared to other ‘good’ deeds, such as training farmers in modern agricultural techniques or providing health care for sick community members. Circumstances may dictate how one measures the relative worth of research and these ‘extramural’ deeds. For example, had a famine been raging in Sussendunga at the time Walker conducted his research, a decision by Walker not to transfer to the local community some of his agricultural knowledge and skills in order to avoid a significant delay or change in his research plans, might justifiably be viewed as morally repugnant. Indeed, a crisis situation such as this arguably transcends the moral boundaries that are drawn between things that a researcher can and cannot provide on the basis of their professional capacity and commitment to their research. In other words, a famine might dictate that even if Walker had no professional interest in, knowledge of, or experience with agricultural matters, he would have a moral duty to try and assist in alleviating local hunger and starvation. Yet, the same cannot necessarily be said of researchers working in non-crisis situations, where the argument can be made that researchers should stick to what they know lest they expose people to potential harm by dabbling in things they lack knowledge or skill in. Of course, many developing-world settings affected by serious poverty, disease, and lack of basic resources are in a state of more-or-less permanent crisis, making it hard to argue that there is no urgent or overriding cause for intervention.

As this discussion makes clear, the concept of asymmetry in perceptions of researcher identity highlights how profound and complex are the ethically important moments associated with these perceptions. By opting to remedy or correct these asymmetries, researchers are not simply ensuring that ‘the truth be known’ about their identity and role. A larger claim is also being made, a claim about the researcher’s circumference of moral commitment. Apart from the question of whether this claim is valid, there is the question of whether researchers are even aware that they are making such a claim. As Guilleman and Heggen write,²⁷ there are many topics or issues of deliberation that are considered private and inviolable within the context of research. From the perspective of most researchers, these ‘zones of untouchability’ almost certainly include questions and issues associated with researcher identity. In our view, it is imperative that researchers allow themselves and others access to these questions and issues if the ethical and practicable ramifications of researcher identity are to be acknowledged and deliberated. The next and final section of this paper examines how, in combination with the concepts of symmetry and asymmetry in identity perception, the mechanism of ‘mindfulness’ may be highly useful in aiding this process of acknowledgment and deliberation.

ETHICAL MINDFULNESS AND RESEARCHER IDENTITY

In recent years, a number of authors have turned to ‘ethical mindfulness’ as a conceptual tool for aiding the management of ethics-in-practice issues in health care and research.²⁸ The concept has also been used in public health ethics, environmental ethics and counselling practice and research, among other areas.²⁹ Guillemin and Heggen have defined ethical mindfulness as a ‘group of predispositions or characteristics rather than any single skill or trait’ for addressing ethically important moments in health care practice and research.³⁰ They propose that researchers need to exercise greater ethical mindfulness by: (1) acknowledging the role of ethically important moments in the everyday practice of research; (2) giving credence to ‘not feeling quite right’ about a research situation; (3) articulating what is ethically important in the practice of research through application of the principles of respect, justice and beneficence; (4) being reflexive, that is, taking stock of actions and role in research and; (5) having courage by way of being receptive to new ways of thinking about research ethics and critically challenging established research practices.³¹

A fuller theoretical discussion of the concept of ethical mindfulness can be found elsewhere.³² Here, we limit ourselves to pointing out that the concept is potentially very useful when linked to the ethically important moments surrounding researcher identity. That is to say, researchers may benefit from being ethically mindful in their efforts to navigate the ethics of researcher identity if they were to:

1. Acknowledge that researcher identity can lead to ethically important moments in the everyday practice of research

   Just as these moments can be passed over in research generally,³³ they can be easily passed over in the context of research identity. Being aware of the potential for researcher identity to generate ethically important moments anywhere in the research process is essential. This awareness can take the form of several basic questions that researchers should ask themselves over the course of the research, including: How do people perceive me, my role and my associated activities? Are these perceptions in line with my own perceptions? What problems may result if they are not in line? What ethical implications may follow from perceptions that seem ‘symmetrically positive’ at first, but that disguise key issues of power and representation?

2. Give credence to ‘not feeling quite right’ about how their identities are being perceived and how they themselves respond to these perceptions

   For example, a researcher may not feel quite right about being viewed as an American, a minor celebrity, or a fictive kin member, friend or neighbour, or about viewing him- or herself as only a ‘researcher’ or ‘scientist’. As Guillemin and Heggen comment,³⁴ such feelings should not be ignored or dismissed, but used to prompt ‘thoughtful consideration’. We would add that they should also be used, where feasible and appropriate, to prompt open discussion with fellow researchers and community members about perceptions and misperceptions of researcher identity and the ethical issues emerging from these.

3. Articulate what is ethically important with respect to their identity and role in research

   It is not enough for researchers to simply intuit or know that something is amiss in how their identity is being perceived. Researchers must be able to identify which fundamental principles of research ethics are at risk of being violated and need to be upheld in their encounters with identity issues. Apart from being familiar with these principles, researchers should be able to articulate, for example, that the principle of respect for persons is at stake in how researchers introduce themselves to a community, or that the principle of beneficence is at stake when the identity of ‘researcher’ is invoked to deflect a call to humanitarian action.

4. Be reflexive

   This involves preparing to reflect openly and critically on all aspects of research identity in an effort to enhance the ethical rigors of the research. Being reflexive throughout the research process is critical given the multiple and shifting identities that researchers can occupy, and the potential for role confusion and expectancy violations to accompany these multiple shifting identities.

5. Have the courage to question one’s identity as perceived by others as well as oneself

   Being courageous in the context of researcher identity can also mean having to seek out and engage the source of suspicions that the researcher is an informant or spy. More broadly, courage with respect to researcher identity means being open to confronting the protective limits of one’s identity as researcher and scientist, and to consider adopting other roles that more directly align with community needs and wants.

Finally, Guillemin and Heggen’s concept of ethical mindfulness can be theoretically extended in another direction as well, that is, toward greater community involvement in the process of being ethically mindful of researcher identity. One way to conceive of this extension is to place researcher identity within the context of community engagement approaches aimed at giving communities greater voice and agency in the research process. These approaches span a wide variety of models, from CBPR to deliberative consultation.³⁵ While CBPR is not appropriate to all forms of research, some level of community engagement is certainly possible in any research project involving local communities in the developing world. The overarching goal of many of community engagement approaches is to establish a basis for ongoing rapport, support and mutual trust in research and among research partners. The types of problems we have seen associated with researcher identity clearly have the potential to undermine this goal. Moreover, community engagement typically takes place through direct communication and interaction – processes in which researcher identity is highly visible and active. Researchers will necessarily be talking about themselves, where they come from, what they do, and (often by implication) what they don’t do. Community members will likely be assimilating and processing these identity claims, although they may not necessarily ask questions or comment openly about them. This is another key opportunity for researchers to exercise ethical mindfulness, that is, by inviting community members to comment openly and critically, if need be, on the identity claims being made by the researcher. For example, a researcher could ask community members with whom they are interacting, ‘So, I mentioned that I am a researcher [or scientist; anthropologist; etc.]. What came to mind when you heard that? What experiences, if any, have you had with researchers in the past? Is there anything about me or what I have said about myself that you think are important to talk about?’ Similar questions may need to be asked at later stages, as researcher identities accrue, evolve and change over the course of the research. Questions such as, ‘So, what/how do you think of me now that I have been here a while?’ or, ‘How, if at all, have your expectations of me changed?’ may seem mildly embarrassing to pose, but, in fact, may be highly appreciated by the community. They also have the potential to grant the researcher a greater degree of insight into, and control over, the evolving nature of their identity, while demonstrating respect for the community’s perceptions of the researcher. While different kinds of research ranging from placebo-controlled drug trials to behavioural health interventions will afford different kinds of opportunities for stimulating this kind of identity-oriented dialogue, we would venture that all research that relies at some level on community buy in and support is capable of fostering such dialogue, and, moreover, has a responsibility to foster it, given the stakes.

The need to engage communities with such reflexive questions may seem obvious given the magnitude of the commitment that researchers and communities make to each other. Yet, these types of questions probably get asked very infrequently. One benefit of asking them is that they may let the researcher know early on in the research process roughly where they stand with respect to the community and whether to anticipate possible issues with how the community will articulate the researcher’s identity and role. By asking these or similar questions the researcher also provides community members with a chance to share their views and opinions on the identity claims that the researcher will invariably make over the course of a community engagement process. Equally importantly, these questions symbolize a willingness and openness on the part of researchers to reflect on and discuss the protective limits surrounding their identity as researchers. Structures such as community advisory boards (CABs) potentially could be used to take these initial discussions further, by way of channelling community perceptions and concerns associated with research identity; assisting the researcher in clarifying potentially damaging misperceptions of their identity; and serving as a moderator for ethical tensions between the research and the immediate needs of the community. These and other strategies may also help ease the burden that otherwise falls largely to the researcher to carry, in terms of identifying and managing the ethics of researcher identity. Arguably, the research relationship as a whole may be strengthened if the community and researcher jointly share responsibility for bearing this burden.

CONCLUSION

Researcher identity is a malleable and dynamic part of the relationship-building process in research. Researchers frequently lay claim to an overarching identity – that of ‘researcher’ or ‘scientist’ – from the moment they introduce themselves to prospective research communities and participants, and typically at every subsequent stage of the research. For their part, community members may ignore or reconstruct this identity, as well as ascribe to the researcher other identities, roles and capacities in light of their own perceptions, norms, hopes and expectations, and life circumstances. Researchers should neither underestimate nor view fatalistically the key role played in research by these identity constructions. While they may seem bewilderingly diverse, random and uncontrollable at first, these constructions can be conceptually approached and organized in ways that enhance the researcher’s capacity to identify and deal with them in a timely and appropriate manner. At the same time, the complexity of researcher identity should not be diminished as a multitude of individual-level, contextual and other factors may affect how researcher identities are constructed and experienced. Hence, it will not be simple to extrapolate a set of ‘best practices’ from this complex web of identity constructions and reconstructions. What we have tried to suggest in this paper is a first-step effort at organizing our thinking on researcher identity so that as researchers working in the developing world we feel somewhat more empowered to grapple with the complexities of researcher identity. We have proposed for further discussion and debate a conceptual aid in this respect, namely the idea that identity issues are not chaotic or random but that they fall on a continuum from symmetrical to asymmetrical perceptions, with correlating ethical implications and tensions. Ethical mindfulness in turn is a potentially useful framework for stimulating awareness and dialogue surrounding the ethical issues associated with the evolving, changeable constructions of research identity. More work will be needed to refine these concepts and translate them into a ‘best practice’ framework.

Finally, our paper points to the critical need for further research and cross-disciplinary dialogue into researcher identity and its ethics, in global health research. While anthropologists in particular have provided rich ethnographic accounts of researcher identity, bioethics and research ethics have the potential to investigate these accounts from philosophical, ethics-based and research governance standpoints. Research ethicists are strategically positioned to illuminate the ethics of researcher identity and ask how they ought to be approached and dealt with. As in other areas of global health and its ethics,³⁶ dialogue between social scientists and research ethicists has the potential to enhance this area of inquiry. Equally importantly, the perspectives and voices of community members on the topic of researcher identity and its associated ethics need to be heard. Discussions of researcher identity need to be broadened to include questions of the responsiveness and accountability of procedural ethics sources and systems of governance, and, equally important, of prospective research participants and communities. Scholarship on researcher identity in the global health arena needs to get more inclusive as well as personal.

Biographies

Christian Simon, PhD, is an anthropologist and ethicist, who conducts research on the ethical conduct of research and research best practices. He is an Associate Professor at the University of Iowa’s Department of Internal Medicine and Program of Bioethics and Humanities.

Maghboeba Mosavel, PhD, is a health disparities researcher who conducts community-based participatory research. She is an Associate Professor at Virginia Commonwealth University in the School of Medicine and the Department of Social and Behavioral Health.