Abstract
Keywords
Introduction
Qualitative researchers have developed long-standing critiques of institutional ethics procedures in Anglophone countries. Common critiques include the difficulty of predicting what is likely to happen in qualitative research before it is conducted (Ramcharan & Cutcliffe, 2001; Richardson & McMullan, 2007; Turner & Webb, 2012; von Unger et al., 2016); the privileging of institutional concerns with risk and governance (Halse & Honey, 2007); and the positioning of participants as moral objects rather than subjects with agency (Carnevale et al., 2015). From our positions as two social researchers, educators, and members of a British University’s Research and Ethics Committee (REC), our focus in this paper is on how qualitative researchers and committee members can engage critically and politically with these issues in institutional ethics. We explicitly focus in this paper on how individuals like ourselves can engage with ethics processes as they are now, although we do enter into discussion with the work of colleagues who have proposed more radical restructuring of RECs. We argue that biomedical logic, individualism, and governmentality are indeed present in institutional research ethics, but notably absent is a brave engagement with risk and vulnerability. In this article, we argue that engaging with a “politics of presence” in situational and procedural ethics produces more ethically engaged qualitative research. By this, we mean researchers, participants, and ethics committees opening themselves to power, discomfort, and challenge rather than the “absences” of risk management and governance-heavy ethics.
In writing this paper, we imagine our audience to be colleagues like ourselves who wear at least one of the three “hats”: engaged in research ethics through
The paper is based on a long-standing dialogue between the authors on these matters, and in particular a process of freewriting and autoethnographic reflection around shared prompts. We used freewriting—the practice of writing without stopping (Elbow, 1989; Li, 2007)—as an autoethnographic tool to reflect on our experiences as researchers, teachers, and ethics reviewers and connect them to broader theoretical concerns (Adams et al., 2014; Koopman et al., 2020). We used this as a form of collaborative writing practice: we would write separately using agreed prompts, 1 meet to reflect on our writing, then produce more prompts from our reflections until a clear set of themes emerged. Extracts from these reflections, and our analysis of them, appear throughout the paper, and the themes from our freewriting form three substantive sections of the paper in which we demonstrate how a “politics of presence” might work in research ethics: embracing vulnerability; considering relational presence; and honoring participants. The next section outlines the history and context of qualitative researchers’ critical engagement with institutional ethics. We assert the feminist foundations of our own critical engagement with ethics, and define our politics of presence as counter to institutional shyness around risk and vulnerability. We then develop our politics of presence in research ethics through the three themes we have constructed from insights from our autoethnographic freewriting exercises (situated in experiences of teaching and reviewing ethics as well as researching with ethics) and engagement with previous literature. First, we argue for engaging with vulnerability in research as a “deliberate exposure to power” rather than an ontological condition of passivity (Butler et al., 2016). Second, we engage with situational and relational ethics, arguing that “presence” is a necessarily embodied feature of qualitative research rather than a risk to be mitigated. Finally, we explore the imperative to “honour” participants in qualitative research, and argue that dissection, analysis, and reinterpretation is a necessary “presence” in research that should be foregrounded from the beginning of a research relationship. In making this argument, we contribute to an existing body of literature that has radically critiqued and offered alternatives to Anglophone ethics systems (patterson, 2008; Ramcharan & Cutcliffe, 2001; Van den Hoonaard & Hamilton, 2016). Our own contribution is to develop the principle of presence as a tool, a political orientation, and an aspiration that qualitative researchers and ethics reviewers should embed into their current practice to produce braver and more ethically engaged work. With the caveat that this work is likely to be easier for colleagues with more systemic power in the academy, we are advocating for a bottom-up approach rather than a more radical rethinking of ethics governance; however, in the following section we engage with existing calls for the restructuring of RECs and IRBs.
Institutional Ethics and Qualitative Critiques
There have been long-standing critiques and debates within the social sciences with respect to how fit for purpose institutional ethics is for qualitative research. While research ethics encompasses a great deal more than institutional approval and governance mechanisms (as this paper firmly argues), academic research is inescapably tied to these mechanisms in many parts of the world. It is the tension this produces, and has historically produced, between institutional ethics and what sociologist often consider the real “doing” of ethics that has produced this paper (Guillemin & Gillam, 2004); thus, we begin with the established critiques before exploring our own contribution through the politics of presence.
In the present day, it is considered routine that all social research involving human participants should maintain basic standards like informed consent, the right to withdraw, anonymity and confidentiality, and a careful weighing of risks and benefits (British Sociological Association, 2017). Universities and research institutions in the English-speaking world typically regulate research through ethical review processes and committees, to whom researchers must usually explain what they plan to do, why, and how they will mitigate any potential risks. Whether an institution calls their ethical review process an REC, an IRB, or another acronym, it is likely that researchers will engage with institutional ethical review at some point in their careers (although as von Unger et al. [2016] points out, this is less common in non-English speaking countries).
This is not always welcome. In particular, qualitative researchers have expressed frustrations with ethical review processes that are based on biomedical models and focus narrowly on risk (Halse & Honey, 2007; Ramcharan & Cutcliffe, 2001; Richardson & McMullan, 2007). There are good reasons for the biomedical model’s focus on the tenets that research participants’ personal autonomy should be upheld via protocols like informed consent; researchers should practice non-maleficence (avoidance of harm) and beneficence (offering benefits balanced against harms); and research should adhere to the principle of justice (fairness in how benefits and risks are distributed) (Beauchamp, 2003; Lawrence, 2007). These biomedical ethical standards emerged in the 1950s and 1960s following widespread condemnation of harmful medical research (e.g., Nazi torture and experimentation during the Holocaust, the Tuskegee syphilis experiment that left poor African American subjects to suffer untreated) and non-medical research (e.g., Milgrim’s obedience experiments that led subjects to believe they had harmed or even killed an unseen person in the next room) (Halse & Honey, 2007). The resulting biomedical ethical principles designed to prevent these atrocities from recurring have also formed the basis of codified sociological ethics principles and guidelines in the English speaking world which tend to emphasize principles like informed consent; privacy and confidentiality; avoidance of deception; and prevention of harm (American Sociological Association, 2008; Australian Sociological Association, n.d.; British Sociological Association, 2017).
Despite these principles serving a clear purpose, the unsuitability of biomedical ethical principles for qualitative work is located partially in disciplinary differences. It has been argued that the focus of biomedical ethics on individual autonomy differs from sociologists’ and anthropologists’ concerns with principles like the political implications of research (Hoeyer et al., 2005), ethical obligations toward communities (Halse & Honey, 2007; Tuck & Yang, 2014), and ethical dilemmas around covert research (Calvey, 2008). When judging whether research might be “sensitive,” biomedical, individualistic ethical models focus on the interpersonal dynamics between researcher and participant (e.g., how a subject matter might be embarrassing or distressing for a participant in the context of an interview), whereas social researchers might also locate sensitivity in the relationship between the study and its socio-political context (e.g., how the studied group might be represented through the research) (Lee & Renzetti, 1990). The latter, it has been argued, is not effectively accounted for in institutionalized ethical reviews based on the biomedical model, leading to situations in which a sociological researcher might be actively prevented from conducting research in what their field has deemed to be an ethical manner (Allen, 2009).
Beyond these concerns with the biomedical basis of ethics review, critiques have been leveled at the anglophone culture of research governance for other reasons. Key arguments that have been made include the difficulty of predicting what is likely to happen in research before it is conducted (Ramcharan & Cutcliffe, 2001; Richardson & McMullan, 2007; Turner & Webb, 2012; von Unger et al., 2016); the privileging of institutional concerns with risk and governance (Halse & Honey, 2007; patterson, 2008); and the positioning of participants as moral objects rather than subjects (Carnevale et al., 2015).
First, qualitative researchers in particular have complained of the need to predict risks in their research that by its nature is often emergent and open-ended (Ramcharan & Cutcliffe, 2001; Richardson & McMullan, 2007; Turner & Webb, 2012; von Unger et al., 2016). This is a particular problem for ethnographers, whose research must emerge from interaction and immersion rather than adhere to a strict, pre-determined protocol (von Unger et al., 2016). Regardless of method, a common issue for qualitative researchers undergoing ethical review is that they must “prefigure encounters and outcomes that [are] as yet unknown and unknowable” (Turner & Webb, 2012, p. 386). Ethics boards can view this with displeasure, something Ramcharan and Cutliffe (2001) note is a conflation of research design and ethics; research design can be open-ended while adhering to the highest ethical standards . For example, Participatory Action Research (PAR), in which a community of participant-researchers is formed, must be open-ended by nature to allow a collaborative production of research design that should not be pre-determined by researchers, although an ethics committee may approve a set of principles to guide the participatory work (McTaggart, 1991). In the context of PAR, it is important that ethics reviewers can agree in principle to such ethical open-endedness with space for the researcher to begin their work (rather than to have it refused) and opportunities for ongoing amendments as the project takes shape. The informed consent of all parties is thus maintained on an iterative basis and by adherence to agreed principles, not compromised by the open-ended nature of the research design.
Second, researchers have contrasted their concern with ethics with institutional concerns with “governance.” In principle, the work of ethics committees should concern principles of good research, protecting participants, and supporting researchers, whereas governance (e.g., complying with data protection) should be the domain of experts who work outside of and with ethics committees (Kolstoe, 2022). In practice, ethics review boards are often concerned with governance in ways that impinge upon the “doing” of ethics. One lens through which to understand this is ethics as an institutional discourse; a “system of governmentality” that must be adhered to for access to research funding and resources (Halse & Honey, 2007). This approach to ethics coalesces neatly with existing neoliberal “audit culture” in Universities that is concerned with regulatory mechanisms to evaluate the performance of its employees (Connolly & Reid, 2007; Halse & Honey, 2007). In becoming concerned with how to satisfy the academy, researchers arguably stray from the “real work” of social research and ethical engagement (patterson, 2008).
Third, some scholars have mounted a critique of institutional ethics that sees participants as moral objects, to which researchers have responsibilities, rather than moral subjects with agency of their own (Carnevale et al., 2015). Researchers are positioned as potential risks or “injury-inflicters” toward participants, forgoing a more nuanced understanding of the dynamics between people involved in research (Turner & Webb, 2012). This is a general problem, but one that becomes particularly troublesome when participants are deemed “vulnerable,” a designation that in UK-based research tends to be applied to children, people with learning disabilities, prisoners, and over-researched groups; in other words, people whose ability to consent to research is compromised in some way (British Sociological Association, 2017). Researchers of children and childhood have pushed back vehemently against the institutional understanding of children as inherently vulnerable or risky to work with (Allen, 2009; Turner & Webb, 2012), citing legal, psychological, and alternative ethical principles that understand children to have agency. More widely, qualitative researchers have critiqued institutional ethics’ difficulty in making space for complex, iterative, co-construction of research in favor of a narrow understanding of risk and power (patterson, 2008; Turner & Webb, 2012). Others have noted that researchers themselves may be the “vulnerable” ones, rather than automatically the seat of power in all research dynamics (Bashir, 2020), and that this vulnerability might be a productive site of reflection rather than a failure (Steadman, 2023).
In sum, qualitative researchers have argued that the biomedical basis for research ethics in anglophone countries focuses disproportionately on individualistic principles and fails to account for the social and political ramifications of research beyond the researcher/participant dynamic. Furthermore, institutional ethics review has been critiqued for its failure to accept the emergent nature of qualitative research; its preoccupation with governance and institutional discourses; and its flattening of research participants into potential victims of researcher harms. As qualitative sociologists who are also active in our own institution’s ethics committee, we are sympathetic to these critiques. While the scholars above have proposed alternatives to the anglophone approach to research ethics, our focus in this paper is on how researchers and reviewers can engage critically and politically with things as they are now. We suggest that biomedical logic, individualism and governmentality are heavy presences in institutional research ethics, but notably absent (in our experience) is a brave engagement with risk and vulnerability.
Developing a Politics of Presence
The term “politics of presence” has been used in other fields to denote, respectively, the representation of women and other minorities in state institutions (Baaz & Lilja, 2014; Lovenduski & Norris, 2003; Phillips, 1998), and in human geography in relation to the special presence of particular groups in communities and cities (Darling, 2017; Parikh, 2018). Here, we mobilize this term differently: to express an orientation to research ethics that is explicitly concerned with interrogating power, and leans in to rather than shies away from concepts like risk and vulnerability that institutional ethics tends to attempt to excise from research. It is also concerned with the personal, the intersubjective and the potentialities of feeling, experience and connectedness as part of the research process.
Our politics of presence is heavily influenced by the critiques explored above, but also by feminist ethics. Historically, feminist methodology and ethics has focused on replacing absences with presences. For example, Ann Oakley’s critique of the sociological interview as cold, clinical and unsuited to capturing women’s experiences (Oakley, 1981) has generated a genre of feminist interviewing that replaces these characteristics with warmth, emotion, validation, and care (Campbell et al., 2010; Reich, 2021). Feminist epistemologists have challenged the “view from nowhere” with standpoint theory, which centered the experiences of women (Harding, 1986; Hartsock, 1983), and others have in turn challenged feminist epistemology to reckon with its lack of focus on class and race (Raghuram, 2019). Feminist methodologists and ethicists have also led the field on issues around reflexivity and power, engaging with issues around appropriation and difference (Opie, 1992), “voice” and authenticity (Cornwall, 2003; Leaney & Webb, 2021), “strong” reflexivity (Cotterill, 1992; Presser, 2005) and complex positionality (Egharevba, 2001).
Engaging through a feminist lens with common concepts in research ethics is, therefore, inherently political and requires presence. A useful example of this can be found in Butler, Gambetti and Sabsay’s (2016) theorization of vulnerability. Contrary to its colloquial connotations, they argue, vulnerability can be understood as an agentic and political act, rather than simply a passive ontological condition. Rather than conceptualizing vulnerability and resistance as opposites, vulnerability can instead be understood as “one of the conditions of the very possibility of resistance” (Butler et al., 2016, p. 1). In their chapter in the same volume, Butler (2016) uses the example of protest to explore this dual nature of vulnerability. In protest, embodied subjects engage in a “deliberate exposure to power” (p. 22)—the power of the state—and make themselves vulnerable in a manner that is “exposed and agentic at the same time” (p. 24). This is quite contrary to the understanding of vulnerability typically seen in institutional ethics—where it is treated more like a passive ontological condition of some participants that may lead to their exclusion from participation in research.
While feminist scholarship by no means offers consensus on any methodological or ethical issue, we understand a politics of presence in ethics to be an avowedly feminist endeavor. Orienting ethical practice around presence—of risk, vulnerability, power—makes us better researchers. An early extract from Liz’s freewriting demonstrates the politics of presence at the heart of our endeavors: . . . be prepared to fight and to anticipate the arguments. Recognise how power works and what is at stake. Recognise the discourses used and fight back and then do something else. See the power in the room and see how it is constructed in words as well as bodies. See vulnerability as a weapon that is used against powerless people. See an ethical mission in fighting back against power—even in the system you are meant to be part of. (Liz freewriting, May 2021)
This extract reflects that we situate ourselves as part of some of the institutional and governance processes that we critique. As sociologists on an interdisciplinary REC, we have found ourselves occupying somewhat unruly positions when it comes to ethics. We find ourselves moving in and out of a compliance mind-set, sometimes thinking like the institution with its focus on risk and governance to think strategically, and at other times pushing back against “audit culture” (Halse & Honey, 2007). Like doing qualitative research, we see political engagement with institutional ethics to be a complex, iterative process of constant negotiation and (sometimes productive) conflict.
In sum, we advocate for a politics of presence in research ethics to engage seriously with the critiques scholars have mounted of institutional ethics as individualistic, rigid, and inattentive to complex power dynamics. The following three themes through which we demonstrate the workings of this approach were constructed through engagement with this literature and reflections from our autoethnographic freewriting (Koopman et al., 2020; Li, 2007). These themes are embracing vulnerability; relational presence; and honoring.
Embracing Vulnerability
In our freewriting, we began with prompts around the concept of vulnerability in research. A key absence we noted in institutional ethics—and sometimes in our own practice—was a nuanced engagement with vulnerability in researchers and participants. Protection of participants from harm and distress is a fundamental tenet of research ethics (Beauchamp, 2003), and there is an understandable wish from institutions, REC members and supervisors to also protect researchers, particularly student researchers, from harm and distress in the course of their work. However, this need for “protection” can reveal assumptions and values about who researchers and participants are, and what they need protecting from.
For her Masters dissertation at an Australian University, Liz wanted to do research with people who were preparing to leave hospital on Community Treatment Orders as well as those who had left due to deinstitutionalization—a policy which involved reducing the numbers of people in psychiatric hospitals. To do this, she had to go through a hospital’s ethics board to get their permission to share details of her study with prospective participants. She reflects, I went into a large room with maybe 10 people on a table in front of me. It was of course mainly older white men (it so often is if you are encountering barriers)! It was intimidating and not a conversation in any way. It was a plea and then a refusal and the one thing I remember 30 years on is that vulnerability was the reason given—this research might upset vulnerable people, might be dangerous for them, upset them, unsettle them—feelings were a problem . . . I wished I had had the words to fight them harder to fight back against their definitions—to say how those definitions were violating and imprisoning and all the while, these vulnerable people were being dumped in the community—surely able to talk about the lives that had newly been given to them. (Liz freewriting, May 2021)
Gill also described in her freewriting her experience of going through an NHS REC for her PhD research with women who had had abortions as “intimidating.” The panel made some assumptions around what might make participants vulnerable (e.g., having had an abortion at a young age) and how best to protect them (e.g., reporting all disclosures of abuse to the Police). However, her process ended with approval rather than refusal. She reflects, I remember leaving the panel and walking back to the train station in a bit of a daze. That quickly changed to anger and frustration, and I furiously typed notes into my phone, thinking of ways I might have challenged the questions more or offered better explanations. I felt completely exposed and misunderstood. (Gill freewriting, April 2021)
Both of the above extracts speak to participants being understood as moral objects, to which researchers have responsibilities, rather than moral subjects with agency of their own (Carnevale et al., 2015). These committees’ engagements with vulnerability spoke to the etymology of the term itself; from Latin
In the case of Gill’s research, women who have abortions are often positioned in public discourse as victims of a traumatic or at least unpleasant event. As a result, the voices of women who have had abortions are routinely shut down, silenced, and appropriated; there exists virtually no space for women to tell their full, complex abortion narratives without judgment (Astbury-Ward et al., 2012; Cockrill & Biggs, 2018; Hoggart, 2017). One aim of Gill’s research project was to resist this by carving out some space for these complex narratives. Similarly, the judgment that the participants in Liz’s research were too vulnerable to take part in research is part of a familiar positioning of people with mental illnesses as un-agentic (Boréus, 2006; Mooney, 2016; Sifris, 2016). Biomedical ethics locates the “sensitivity” of research within the interpersonal relationship between researcher and participant, rather than between the research and its socio-political context (Lee & Renzetti, 1990). As a result, a framing of our studies’ participants as vulnerable, “wounded,” and at risk of distress left little room for nuance.
Clashes between researcher, participant and REC understandings of risk and vulnerability can produce problems beyond frustrating those attempting to get their research through institutional review. A framing of participants as vulnerable or “at risk” can
Liz’s resistance to the REC’s designation of potential participants as too vulnerable was partly informed by her own biography and the ethic of care it had inspired—she had a family member with schizophrenia who was also “de-institutionalised” around this time from a psychiatric facility: The project was about people like [family member] who were hidden away and then dumped outside the hospital walls. My ethic was care and my project was about experiences of not-caring. I would say to my younger self: write about that, build on that, make it transparent where you come from, what motivates you, talk about him, it’s strengthening—use ethics to make your case, to explain it, embrace his vulnerability, document those stories of strong people getting through things despite the shit that gets thrown at them. (Liz freewriting, May 2021)
Liz’s embrace of her own biography and the ways her own experiences have made her a present researcher invested in the ethics of care is another element of our work we have found sits uncomfortably with institutional ethics. In our experience, biographical links to research topics—which are not uncommon in social research—can be perceived as risk factors by RECs rather than understood as potentially rich “ways in” to ethical research, despite existing literature that thoughtfully explores both dimensions (Davison, 2004; Howard & Hammond, 2019; Steadman, 2023).
In our final round of freewriting, we reflected on how we have turned lessons learned as researchers into good practice as ethics reviewers. While we are not advocating in this paper for a wholesale re-work of RECs, we would suggest that the issue of (perceived) vulnerability is one that people involved in institutional ethics boards could engage with in a more nuanced way: I think about how perhaps the issue is not who is being researched but how—not at the descriptive level of methods but at the level of how power (historically contextualised) gets worked and moves around during the process of research. (Liz freewriting, May 2021)
Rather than thinking of vulnerability as a categorization of participants, Liz reflects on whether an ethics application has given an adequate account of the potentially dynamic aspects of power that produce vulnerability—in participants but also in researchers. Furthermore, researchers often do feel vulnerable (in the Butlerian sense of opening oneself up to power) themselves in institutional ethics review processes. In Gill’s freewriting on her approach to ethics reviewing, she thought of the process as a researcher trying to swing their way across a set of monkey bars (which some find easy and others find incredibly hard): . . . maybe we . . . recognise that people might need help across the monkey bars because they’re bloody difficult and awkward, not because the person isn’t a good researcher. (Gill’s freewriting, June 2021)
We encourage researchers and reviewers to embrace a politics of presence that gives space for researchers to reflect on their positionality without the sole framing of risk, and with a framing of vulnerability as a potentially agentic act rather than an ontological condition that participants and/or researchers cannot leave (Butler et al., 2016). It would frame the deliberate and considered sharing of abortion narratives in Gill’s research, and the sharing of lived experience of Community Treatment Orders in Liz’s, as an act of vulnerability in the sense that it is an agentic act; a “deliberate exposure to power” (Butler et al., 2016). Starting with this understanding, rather than one focused on risk in absence of other considerations, requires thinking about presence rather than absence—what researchers and participants
Relational Presence
A politics of presence in ethics therefore engages with vulnerability as a potentially positive field of force rather than a “wound.” We now turn our attention to thinking about how vulnerability might circulate in the research encounter, in what Guillemin and Gillam (2004) call “ethically important moments.” We apply our lens of presence to relational ethics, and give examples of moments in which we have been invited to be present in research encounters in an embodied sense, leaning in to the “hyphen” between self-other (Fine, 1994).
Qualitative researchers (heavily influenced by feminist researchers) typically spend a great deal of time thinking about the relational aspect of their work—the work of the “heart and mind” that focuses on bonds, intimacies, and actions toward others (Ellis, 2007). Institutional ethics does often offer space to reflect on relational ethics, although in our experience it is often framed using the language of participant and researcher wellbeing, or the mitigation of harm and distress. In our practice as feminist lecturers, we embed relational ethics into our teaching, but also note that student researchers in particular are heavily shaped by institutional discourses of avoidance and disengagement in research ethics when it comes to the “risk” of relational presence. For example, in our experience, it is common in student ethics applications to see potential participant distress as a problem to be met with stopping the research activity entirely and immediately, before considering other options. We have also observed research students expressing fear about distressing participants in research and internalizing an avoidance discourse. We push back against this by demonstrating common research scenarios in which engagement and presence are a necessary and ethical imperative.
We understand relational presence in research encounters to be the “hyphen” between self-other as described by Fine (1994). This “hyphen” is a space that both merges and separates the self and other, a space we need to “work” because “self and other are knottily entangled” (Fine, 1994). This type of presence that is fully and critically inside the hyphen is often embodied, a practice that brings all of the senses into the research encounter without splitting into
Liz’s reflections in freewriting offered an example of these embodied, knotty entanglements that research encounters can produce. During her PhD project about the decision of whether or not to have children, Liz was pregnant and gave birth to her first son. She remembers a particular interview she scheduled when her son was very young, when she would leave him at a nearby crèche and walk to interviews while breast milk would sometimes leak through her shirt, a bodily reminder of her “mother” role as she was also attempting to embody the “researcher” role: One day a male participant came into the interview room and he seemed distracted. I remember feeling vulnerable and alone at the top of the building with my leaky breasts, my baby needing me and this man I didn’t know appearing stressed. I put my cardigan on despite the heat. As the interview progressed he explained that he didn’t want a child but his girlfriend did and he had been to the fertility testing clinic that morning but they had lost his sample. He’d just found out and would have to go through the whole testing process again. During the interview his understandable frustration dissipated slowly as did my anxiety. It softened into pain from something hot and dry to something liquid—almost like tears but not. The talking and listening and asking did something. We both softened, became more fluid and more flowing, in our commons—our losses, the people we missed, and what made us vulnerable made us connected, silently, one body to another, enfolded fluids activated in vulnerability into something more. (Liz freewriting, April 2021)
This encounter demonstrates the mobility of vulnerability as it flowed between Liz and her participants’ distant and recent pasts, and ultimately led to something creative and productive as “[t]he talking and listening and asking did something.”
Similarly, Gill experienced a research interview during her PhD on women’s abortion experiences that presented an opportunity to lean in to a difficult disclosure that resulted in a positive outcome. In this interview, Gill’s participant was telling the story of how she became pregnant, and it quickly became clear to Gill that the participant had been sexually assaulted by a co-worker. However, in the participant’s telling of the story, the word “rape,” or anything close to it, was absent. The participant hurried through a brief telling of the story, and then moved quickly on to the next topic. Gill and her participant had a second interview a few weeks later, and Gill chose to circle back to this disclosure, to: . . . offer my interpretation of what happened—that really [he] was more to blame than she was—and that if she [the participant] was my friend, I would be keen to let her know that she shouldn’t feel ashamed or responsible for his action. That if she were my friend I would feel really sad that she felt that way. Before I finished, she jumped in and relief seemed to tumble out of her. Yes, she felt it was “rapey” (her word). Yes, she’d talked about it to her friend and her mum, and they agreed. Yes, this was an experience it was OK to feel shit about. (Gill freewriting, April 2021)
In this example, the invitation to intimacy—“if you were my friend”—extended some openness on Gill’s part that her participant responded to with relief. In Gill’s memory, this new intimacy and relief was embodied; both parties leaned in to one another, and her participant’s body language became more open and expressive. The rest of the interview felt like a “therapeutic opportunity,” in which both researcher and participant came away with a changed understanding of their own experiences and positions (Birch & Miller, 2000).
In the above examples, the ethics of presence involved the body and the heart as much as it did the mind. As Liz reflects, I think I have spent a lot of time wondering about the ethics of how I handled something—did I respond right, did I follow up, did I say the right thing, did I write up it up right, did I not write it up right. I say now to my younger self, were you there? And coming here from an ethics of others which is about presence not absence. About not thinking just for a moment but feeling. (Liz freewriting, May 2021)
While it is not possible or desirable to disengage the analytical mind completely during research encounters, being present and “not just thinking for a moment but feeling” is a not uncommon phenomenon. Indeed, Guillemin and Gillam (2004) note that “ethically-important moments” that have important ethical ramifications can occur without the researcher feeling that they are necessarily on the “horns of a dilemma” (p. 265). As Stake (2003) argues, social researchers are “guests in the private spaces of the world,” (p. 103) and relational intimacy presents itself routinely in qualitative research encounters in ways that require the researcher to trust themselves to act ethically. Outside of what is traditionally seen as the “data collection” phase of a research encounter, the work that is done “around” it—for example, the setting up of an interview—is also often infused with moments of intimacy, particularly when researchers are invited into participants’ private spaces and offered hospitality (Oakley, 1981). These moments are not entirely predictable or easily discussed on an ethics application, but can establish a foundational aspect of qualitative research, a “shared sense of our humanness” (Wahab, 2003, p. 636).
In discussion with our students in a joint teaching session on research ethics, one of the questions we posed around relational presence was “Do you trust yourself to navigate things in the field? If not, how might you get there?” Questions students had for us in response to this prompt included asking for more concrete guidance—for example what
We propose that being present in a research encounter is a state of body and mind that can be cultivated and practiced. While not directly analogous, the practice of mindfulness bears some similarities to this state. Shapiro and Schwartz (2000) describe mindfulness as an “affective state of mind” that is necessary to avoid the usual “cascades of thoughts, emotions, rumination, and evaluation” that we often experience when turning our thoughts inward (p. 253). They note that in Buddhist psychology, mindfulness requires “cultivation of an intention to develop kindness, patience, tolerance, gentleness, empathy, nonstriving acceptance and openness”—in other words, not only an inward orientation, but an outward one (p. 260). The tension between this affective state and the traditional requirements of academia is reflected by Hinton-Smith and Seal (2019) in their recounting of being researchers and participants in a creative writing workshop with prisoners. The balance participant-researchers must strike between “thinking on one’s feet,” offering intimacy where appropriate, and surrendering the “advantage” researchers normally enjoy of being able to self-censor and maintain a “measured performance as a professional academic” (Hinton-Smith & Seal, 2019, p. 569) is not always a comfortable or easy position to occupy.
Like mindfulness, the ethics of presence—being there—requires practice and trust. We would argue that relational presence is a part of what Frank (2004) calls ethics-as-process: ethical wisdom is not something you have but is a process of ongoing perpetual attainment. Ethics protocols and procedures are only the beginning; ethics is about continual learning, self-awareness in terms of who one is, who one wants to be, and how to help others in their processes of becoming. A focus on “ethical relations allows us to live with ourselves, perpetually responsive to others.” (Frank, 2004, p. 357).
While situational and relational ethics can be hard to translate into procedural constraints, institutional ethics should be able to handle this through a focus on principles like presence, process, and trust. In our experience as ethics reviewers, researchers engaged with these principles tend to write reflexive and engaging ethical applications, but reviewers must also trust that these principles are being cultivated in the faculties and student bodies of their institution. Fostering this trust might include asking different questions on ethical review forms, but is likely to be best achieved by changing cultures within and between RECs and the faculties they serve. Connolly and Reid suggest that researchers and reviewers alike signing up to a set of values—including that reviewers hold an inherent trust in the culture of the disciplines they serve—produced a productive, facilitative approach to ethics in their own institution (Connolly & Reid, 2007). In our own institution, ethics reviewers are simply members of faculty who volunteer, and we encourage informal, face to face conversations about ethics as much as possible within our department to maintain a “relational presence” as reviewers. We have also prompted our REC to consider how working conditions of reviewers facilitates or hinders trust e.g., if we have little time to engage with applications due to our workloads, this lack of time can translate into a lack of care. In Gill’s freewriting, she noted that when reviewing she often asks herself “[a]re you really present and hearing what this researcher is trying to communicate?” (Gill’s freewriting, June 2021). Often, the answer is, unfortunately, no—she has too much else to do. In an ideal world, RECs and the faculties in which they sit should consider fostering “relational presence” in their own work together through regular formal and informal meetings with faculty and students, and attention to working conditions of committee members. In being consciously present to the system, reviewers are more likely to avoid practices of habit and culture, and move into a deeper ethical engagement with the research in front of them.
Honoring
In this final section, we explore the practice of “honouring” in research ethics, particularly when participants are no longer in front of us. The word “honouring” in this section is inspired by a participant in Gill’s abortion research. She felt absolutely certain about her abortion, and didn’t quite feel her pregnancy was a person or alive in a meaningful sense. However, she did not see the pregnancy as meaningless, and felt determined for the abortion to be a process that “honoured” the pregnancy. For her, that meant choosing an abortion procedure that felt appropriate, speaking of the pregnancy respectfully, even lovingly, in the years since it had ended, and recognizing the pregnancy as a process that would have ended with a life, but that she had chosen to cut short. It was a moving exchange imbued with deep care and love for herself, her pregnancy, and her decision to bring it to a close.
We find this use of the word “honour” evocative. It speaks of respect, reverence, care, giving back, celebrating, and recognizing the importance of something. It also invokes a consideration of the
In reflecting on how we “honour” researchers in our role as ethics reviewers, our freewriting revealed our discomfort with the unkindness the anonymous reviewing processes sometimes produces: There are difficult power dynamics to negotiate when you are an anonymous reviewer. It seems to give license for some people to be very unkind and not at all careful in their reviewing practices. This is especially glaring when more senior academics are reviewing student applications. There is real contempt and dismissal in some reviews I have seen, which to me embodies the absolute opposite of what a productive ethics process should be. Honouring the process on both sides means being careful and caring. (Gill’s freewriting, June 2021)
The principle of care is therefore central to our practice as ethics committee members. This is directly related to our practice as researchers. When considering the imperative to “honour” participants in research, feelings of guilt and worries about betrayal may swirl around a number of issues related to presence and intimacy (Wahab, 2003). The most stark example of this is presented by Kvale (2006), who argues that intimacy and a sense of collaboration in qualitative interviewing is “an illusion of mutual interests in a conversation,” given that interviews take place for the purposes of the interviewer and not the participant (p. 483). In using techniques to build rapport and emotional trust, Kvale (2006) argues the researcher is “faking” a quasi-friendship designed to “get some printable information on tape,” (p. 482). In this understanding of interviewing, researchers use a facsimile of intimacy like a “Trojan horse,” slipping past respondents’ defense mechanisms into their inner world.
Relatedly, researchers may be aware that participant expectations about research do not match up with their own. In previous sections, we have given examples of moments of relational presence in research encounters that speak to the definition of vulnerability as a deliberate exposure to power (Butler et al., 2016). When asked, Gill’s participants in the abortion research reflected this agentic exposure; her participants had said they wanted to help others by sharing their own stories; they felt compelled to tell their stories to help themselves get closure and move on; and they appreciated having a space to talk about their abortion with a non-judgemental listener, safe from the stigma and judgment of the outside world. It is worth noting, however, that none of these things were exactly the primary aims of Gill’s research—her aims were to contribute to an academic discussion about abortion experiences, social class, and storytelling.
This tension between researcher intentions and participant expectations can produce guilt and a sense of betrayal when it comes to the data analysis and writing up stage of research. For example, Wahab (2003) reflects on this following her collaborative research with sex workers. Contrary to Kvale’s characterization of interviewers as manipulative, Wahab (2003) recounts the “sharing, reciprocity, and mutuality” that transpired in her research encounters as genuine (p. 636). However, she describes the analysis process as “impersonal, objectifying and lonely” (p. 637). The process of dissecting and coding the data felt like it might “compromise the integrity and spirit” of the narratives participants had created (p. 637). Wahab goes on to reflect that, “[a]s paternal as it sounds given their informed consent to participate, I feared betraying the women by translating and disseminating our stories for outside viewers” (p. 637).
The sense of betrayal that Wahab describes here can be re-thought through considering the political question of what research is for. Tuck and Yang (2014) have argued that North American social scientists are embedded in a “settler colonial mentality” that produces an imperative to “serve up pain stories on a silver platter to the settler colonial academy” in an effort to represent people’s stories “authentically” (p. 812). Marginalized communities are invited to offer up these stories of pain upon which the academy’s claims to knowledge are often based (p. 813). In reflecting on the politics of ethnography, Leaney and Webb (2021) draw attention to the problematic claims around “authenticity” that social researchers are prone to making, for example by displaying raw data and letting it “speak for itself” (p. 48). In contrast, they argue the role of the ethnographer is not to represent things “as they are”—this is impossible—but to critically analyze the “in-between”: the moments when observations are theorized and translated into the final text (Leaney & Webb, 2021). These moments offer the opportunity to make visible ruptures in the dominant order of things, an opportunity that is not produced by imagining the researchers role as to “look in” to an “authentic” reality that the ethnography can later reproduce for an academic audience (p. 52). In this sense, the researcher’s role is to critically analyze the workings of power, and research itself, not simply to collect stories that are “not ours to give away” (Tuck & Yang, 2014, p. 816).
Each of these three issues—conflicting researcher and participant expectations; the burden of dissection; and role of the researcher as analyst—problematize the centrality of “presence” in the approach to ethics we have advocated in this paper. However, they do not allow us to abandon the imperative of presence entirely. For example, to honor participants, we argue that there is an obligation to use their data to its fullest. That means being analytical, critical, deconstructive, playful, and imaginative, as well as being careful with the stories and shared moments we are entrusted with. This is a principle summed up by Gill’s notes during her PhD data analysis: Participants’ words and narratives are not fragile wholes—they are messy and will change from day to day—in giving a narrative in an interview, someone is relating the particular to the whole—that is also what you as the researcher and analyser are trying to do—you have to mess up their mess! . . . Honouring is not about the individual story—you need to be playful and expansive too. (Gill’s notes, “Stuck Places in Analysis” workshop at the University of Sussex, 9 January 2017)
As researchers, we have an ethical obligation to engage with the process of analysis and create a “finished project,” not simply to repeat what participants told us (they can probably do this themselves). We are not collectors of stories (Tuck & Yang, 2014). Participants’ narratives and expectations are not best served by treating them as fragile vases that must be kept whole. Furthermore, the “Trojan horse” techniques critiqued by Kvale (2006), and the colonizing gaze refused by Tuck and Yang (2014), point to the importance of making the presence of the researcher’s role explicit from beginning to end. Research encounters can be self-serving, manipulative and extractive, but they can also be spontaneous, unpredictable, and lead to genuine connections. Indeed, we would argue that truly honoring participants in research means It is a different question to how will you avoid harming your participants and speaks to the issue of not overstating protectionism and vulnerability. Where does this angle take people to? How would you embed respect into the research process rather than the avoidance of harm—how does that deal with the issue of harm if it comes first? I might honour a participant by asking them to speak, listening with presence, to consider how my research serves me and then to the greatest extent possible, turn that service towards them. Honouring is to make much of the time they have given and to make much of their words, putting their words to the best purpose. It means giving them as many choices as they can and attending to their needs and their rights. It means acknowledging the gift of their participation. It may mean sharing myself if they ask. Does it mean cultivating a relationship that is ongoing if that is needed? Does it mean not performing a relationship but having one? (Liz freewriting, June 2021)
The ethical possibilities of intimacy and relational presence in research are not at odds with the role of the researcher as a critical analyst and dissector of participants’ stories. Indeed, researchers have an ethical imperative to engage explicitly with our role as dissectors and analysts, rather than imagining that we are simply collectors of stories. In making this role present and explicit throughout every stage of research, from recruitment to writing up, we take seriously the possibility of social research to challenge dominant representations and make visible the limits of established knowledge (Leaney & Webb, 2021).
Conclusion
Biomedical logic, individualism and governmentality are heavy presences in anglophone institutional research ethics, but notably absent is a brave engagement with risk and vulnerability. In this paper, we have argued that engaging with a politics of presence in situational and procedural ethics produces more ethically engaged qualitative research. We have advocated for researchers, participants, and ethics committees opening themselves to power, discomfort, and challenge rather than the “absences” of risk management and governance-heavy ethics.
Through reflective, autoethnographic freewriting, we have demonstrated the possibilities of a politics of presence through three themes. First, we demonstrated that RECs’ focus on “protection” can reveal assumptions and values about who researchers and participants are, and what they need protecting from. We argue for engaging with vulnerability in research as a “deliberate exposure to power” rather than an ontological condition of passivity (Butler et al., 2016), a potentially positive field of force rather than a “wound.” Second, we engaged with situational and relational ethics, arguing that “presence” is a necessarily embodied feature of qualitative research rather than a risk to be mitigated. Finally, we argued that the imperative to “honour” participants lives and stories is compatible with the role of the researcher as an analyst, and that this role should be an explicit presence at every stage of the research.
We have advocated for those involved in ethics committees, like ourselves, to consider how we might enact a politics of presence within systems we have not designed. We have argued for ethics reviewers to think in nuanced terms about vulnerability as less of a category and more of a complex power dynamic. We have argued for finding avenues for “relational presence” between committee members and faculty (indeed we are often both of these things), even if highly informal. We also acknowledge that ethics reviewers’ workloads and working conditions are directly related to our ability to develop a trusting, careful practice; it is perhaps more senior and secure academics who may feel able to advocate for this in their own institutions. Finally, we have applied the principle of “honouring” to reviewing, as we do to research, by reflecting on how respect and care can be balanced with the imperative to engage in the regulatory business of ethics committees.
In advancing this call to foreground a politics of presence in research ethics, we invite fellow researchers, educators and ethics reviewers to engage critically with the absences in our practice. While many qualitative researchers have argued that anglophone institutional ethics systems are not fit for purpose or require radical overhaul (Allen, 2009; Connolly & Reid, 2007; Halse & Honey, 2007; Van den Hoonaard & Hamilton, 2016), this paper begins from the premise that researchers must engage with things as they are, as well as imagining how things could be. In the spirit of maintaining the aspiration of transformation (patterson, 2008), we note that colleagues like ourselves who are at once part of and critical of institutional systems have the opportunity to find the limits of current practices and gently pull at them. In doing so, qualitative researchers can occupy the absences of institutional ethics with alternative logics of presence.
Footnotes
Declaration of Conflicting Interests
Funding
ORCID iD
