Towards a culture of care for ethical review: connections and frictions in institutional and individual practices of social research ethics

ABSTRACT

As researchers, institution-wide regulatory and organisational cultures guide our work. Over the past two decades, University Research Ethics Committees have been formally established across social science disciplines. However, the functioning of these committees has not been without critique. It is often argued that established ethical procedures informed by the medical sciences do not fit well with the more iterative epistemologies and unpredictable practices of doing social fieldwork. In this paper, I contribute to these discussions by considering what a further framework, a ‘culture of care’, might offer to university research ethics. A culture of care has evolved in contexts like the National Health Service (NHS) and animal research, and makes central claims around support, openness, collaboration and relationships. Bringing this to research ethics, I explore experiences of care through moments of friction in doing fieldwork with people living with Motor Neurone Disease. Identifying gaps between the institutional, personal and relational, I tentatively suggest some key features that a culture of care for research ethics might seek to develop. These discussions are also timely. Wider conversations emerging around reimagining research cultures in higher education provide an opportune moment to consider what a reimagined research ethics might look like and offer too.

Introduction

James was living with Motor Neurone Disease, an incurable neurodegenerative disease, that causes progressive muscle loss and an ‘average’ prognosis of just eighteen months. We had met at a patient engagement event, just before I submitted my project to the university research ethics committee. He was enthusiastic about improving how science was communicated to patients and was eager to take part in an interview as soon as possible. Over the next eight months, he would email semi-regularly to ask how I was getting on, and if he could take part yet. Sadly, this could not happen. Continuing delays with obtaining ethical approval, and multiple re-submissions meant that six days before ethical approval was granted, James’ wife emailed to let me know that he had died.

University research ethics committees (URECs¹) are an integral part of higher education, known for their bureaucratic processes and role in providing public assurance for proposed research projects. There is extensive literature on URECs, with Popke (2006, p. 504) estimating ‘something in the order of 1,500’ articles concerning research ethics are published in academic journals each year. As part of this, many geographers and other social scientists have interrogated the differences between research as presented to the UREC, and the practices of doing research (cf. Fudge et al., 2010; Hall, 2014; Halse & Honey, 2005; Pyer, 2008; von Benzon & van Blerk, 2017; Wilkinson & Wilkinson, 2019).

Whilst URECs focus upon legislation and standardised processes as a way of ensuring protection, in other spaces and organisations responses to scandals have focused upon creating a culture of care. A culture of care has developed as an aspiration for healthcare within the UK’s National Health Service – NHS (Rafferty et al., 2015, 2017). Considering principles like prioritising patient care, community, and empowerment, the formulation of a culture of care developed following high-profile failures in care. The premise behind it is that care is supported through internal systems, collective responsibility, and being publicly accountable and open. In contexts outwith healthcare, a culture of care has become part of the governance around caring for animals in research (Friese et al., 2019), and in student-centred school education (Cavanagh et al., 2012). Encouraging a culture of care is not considered ‘the answer’, indeed, as feminist and critical approaches to care have illustrated, care might also be as troubling as it is nourishing (De la Bellacasa, 2017; De la Bellacasa et al., 2012). However, a culture of care offers a way of conveying the need for care at all levels of an organisation (Rafferty et al., 2015).

Conversations around cultures of care are currently absent from discussions around URECs. Yet similarities exist between the challenges that led to the implementation of URECs and the NHS’ culture of care framework. Both emerged from scandals over a lack of care towards participants or patients. Whilst URECs developed as a way of controlling and preventing harm (and litigation), the attempt to establish a culture of care focuses upon relationality, support and collaboration amongst staff and patients (Rafferty et al., 2015). Recognising these similarities, one can ask whether aiming to create a culture of care in the governance of research ethics might offer any answers to enduring critiques around URECs.

Geographers are well positioned to play a role in discussing this question because of their attention to context and the spatialialities of care(ing) relations. The personal ethics of doing research on the ground sits within, and sometimes against, institutional procedures that are further away from those affected by research (Hall, 2009, 2014; Halse & Honey, 2005;). This means they are also further away from the situatedness of fieldwork and careful practices of meeting participants and being present. The home as a site of interviews, for instance, is more intimate than an institution, but through a more encompassing and relational approach to research both spaces might be connected in more supportive ways.

A focus on envisioning cultures of care is also timely. Funders and professional bodies have started to make a commitment towards ‘reimagining’ research cultures (Royal Society, 2020; Wellcome, 2020). Reconsidering URECs alongside this offers a way of ensuring that URECs do not remain stagnant as wider conversations about creating a positive research culture move on.

In the following sections, I set out current debates concerning research ethics, care, and cultures of care, and how these are networked together. I then introduce my research and five reflections on moments of care and friction. These reflections are taken from a project looking at how people with experience of Motor Neurone Disease engage with biomedical research. As these reflections set out, the prescriptive approach of a UREC did not always align with my own experiences of doing fieldwork. Finally, from these, I trace what the key features of a culture of care for UREC might consider, how it could offer a way of connecting up gaps between the institutional and the personal, and better listen to the needs of participants and researchers.

Making connections: ethics and care in research governance

Ethical regulation for research was formalised within the Nuremberg Code of Ethics, following a series of scandals including notorious experiments during the Second World War (Department of Health, 2005; see also Bell, 2008). The principles set out in the Nuremberg Code have been integrated into laws and proceedings that affect research ethics. Notably, the National Research Act of 1974 identified basic principles for conducting research. Later, the UK Medicines for Human Use Regulations developed legal requirements around clinical trials (UK Government, 2004). Within the social sciences, ethical regulation developed over the past two decades. Here, research committees have now become commonplace, accelerated by the requirements of funding bodies (Dyer & Demeritt, 2009). While some research, particularly that which involves recruitment of patients or which takes place in NHS grounds, requires additional approval from Health Research Authorities, this paper concentrates upon URECs (see Kerrison & Pollock, 2005; Noorani et al., 2017 & Wilkinson & Wilkinson, 2019 for wider discussions around NHS ethical processes).

The requirement for social scientists to obtain ethical approval is often seen as a hurdle that researchers must pass, an assurance that appropriate requirements are met on paper (Hammersley, 2009). URECs represent a public assurance that the research proposed has received approval from institutions. After the point of approval, responsibility to act ethically moves to the researcher (Askins & Blazek, 2017). Nevertheless, there remains a continuing stream of critiques around URECs. Arbitrary decision processes, tick-boxes and completing extensive paperwork can lead to delays in approval of research. This has implications for researchers, funding and participants (Brenneis, 2005; Fudge et al., 2010; Hallowell et al., 2004; Halse & Honey, 2005, 2007; Stark, 2012). These delays also influence who can and cannot take part as James’ story in the opening of this paper illustrates (see also Wilkinson & Wilkinson, 2019).

The epistemological differences between the approaches taken by committees and the practices of doing research presents other dilemmas beyond timescales. For instance, positivist definitions employed by URECs can oppress or make assumptions about agency that conflict with feminist standpoints and more iterative approaches to doing research (Abebe & Bessell, 2014; Gustafson & Brunger, 2014; Watson, 2002). Those subscribing to iterative approaches might find themselves, as Halse and Honey (2005) illustrate, in ideologically difficult situations that cause the researcher to feel forced to abide by the prescribed (positivist) boundaries of a form.

This opens up a gap between institutional processes, and the personal, relational and spatial practices of doing research. Along with creating anxiety and uncertainty for researchers, concerns have also been raised about whether a compliant approach to research ethics or an approach worn down by resubmissions risks researchers becoming unattuned to ethical issues (Valentine, 2005). As John Caputo puts it:

“Deconstruction issues a warning that the road ahead is still under construction … ethics on the other hand hands out maps which lead us to believe that the road is finished, and that there are superhighways along the way”. (1993, p. 4)

Superhighways are not in place and doing research is imbued with moments of discomfort (see in particular Hall 2009, 2014; Hopkins, 2007; Horton, 2008; Matthews & Tucker, 2000 & Pyer, 2008). In drawing attention to moments of difficulty and uncertainty, the affectual, emotional, and uncertain parts of doing research fall beyond or between ethics and onto the responsibility of the researcher. The weight of this upon a researcher can be significant and result – as McGarrol (2017) describes it – in an ethical hangover. The enduring disgruntlements around ethics committees has led to questions about what a relational ethics of care might offer to ethics committees (E.J. Popke, 2003; J. Popke, 2006).

Care in research

In defining care, Tronto and Fisher frame it as being ‘in everything that we do to maintain, continue and repair our world’ (p. 40). It is of little surprise then that care plays a role in research, both in its absence as well as its presence. Care and caring might nourish relationships within research, but care can also challenge or provoke concern (cf. Murphy, 2015). Geography’s attention to care over the past two decades is valuable here for understanding that care takes place in particular contexts (Brown, 2011; Conradson, 2003; Gleeson & Kearns, 2001; Smyth, 2005). Care is situated, but also extends spatially and temporally to entangle with the bodies that we encounter (Atkinson et al., 2011; Bowlby, 2012; Milligan & Wiles, 2010).

The relational, emergent and responsive features of care sit at odds with the pre-emptive, bureaucratic approaches of URECs. Much like the disjuncture between ethics on paper and in practice, De la Bellacasa points out that care is ‘fuzzier on the ground’ (2017, p. 1). A feminist ethics of care foregrounds emotion and relationships as a fundamental part of ethics (Gilligan, 1982; Tronto, 2013; Tronto & Fisher, 1990). Care is seen as an ethically relevant practice, performed publicly and privately. Tronto and Fisher (1990) identified four pillars of care; attentiveness, responsibility, competence and responsiveness (see also Tronto, 2013). Each requires labour, and depends upon care as being relational – given, responded to, as well as received. At the same time, Sichel (1990) points out that URECs are built upon principles of justice, rather than an ethics of care, which would be more reflective of the relationships we develop and experiences while doing research.

Care is not straightforward. It requires work (and re-working) in response to circumstances and relationships. Caring also takes place somewhere. As Atkinson et al. (2011) discussed in a themed issue on the topic, scales of care vary from the closest geography – one’s body – to wider spaces like the natural environment. Others have concerned themselves with the ‘taking place’ of care – through soil and natural world connections (Haraway, 2016; De la Bellacasa, 2017), national systems of care (Bartos, 2020; Nast, 2020) and the home (Bowlby, 2011; Blunt, 2005; Milligan, 2000). The home in particular has been explored as a site of struggle as well as solace, and residence as well as resistance (Brickell, 2012). Here, care giving and receiving takes place through paid and unpaid care, which is often enduring and embodied (Dyck, 2005; Milligan, 2000, 2005; Twigg, 2000). In doing research in the home, Elwood and Martin (2000) also write about a need for more sensitive accounts around the ‘microscale’ of socio-spatial relations and power dynamics. This raises questions around how conducting research in homes also connects to other dynamics and practices of care.

In the context of a progressive condition like MND the terminology of care carries weight. While care can be nourishing it can also be oppressive. As Hanrahan and Smith (2020) point out, there is a caveat to Tronto and Fisher’s (1990) definition of ‘care to be in everything that we do’ because they overlook damaging parts of care (Hughes et al., 2005; Murphy, 2015; Raghuram et al., 2009). For Raghuram et al for instance, care relations are not equal in a post-colonial world, revealing ‘political contestations and the pain and the absences that underpin global relationships’ (2009, p. 6). In also picking up on inequalities, Hughes et al. (2005) show how the Disabled People’s Movement rejects a framing of care on the basis that power is unequally divided in favour of those caring for (rather than receiving care). Often additional (laudable) ethical questions around caring are also raised concerning the ethics of including those with terminal conditions in research (Alexander, 2010; Lawton, 2001). This is particularly heightened in qualitative research through discussions around whether people are easy audiences for research, or a discomfort around research being unlikely to affect lives but worsen symptoms like fatigue (Bloomer et al., 2018; Sivell et al., 2019). However, one might also argue that reluctance to include certain groups based upon categorisation of ‘terminal’ illness, rather than individual needs, does not embody an attentive and responsive approach in practice. Sivell et al. (2019) conclude that there is not a straightforward answer.

Cultures of care

Concepts around culture and care has previously been discussed within higher education in terms of creating student-centred environments (see, for example, Pratt et al., 1999). Vocabularies around care in research have also proliferated recently, as seen in the prominence given by funding and professional bodies to re-imagining research cultures, challenging environments of bullying, and of being output-centric. The Wellcome Trust (2020) describes a good research culture as one which is ‘creative, inclusive and honest’. Much like the caveats about care, culture as a framing has also received critique for its breadth and for being used to simultaneously explain cause, success and failure (Goodwin, 2018;). However, culture, care, and more specially ‘cultures of care’ are gaining traction as a way of considering the wider systems, hierarchies and relationships within research and higher education.

The idea of a culture of care focuses upon those needing, giving and receiving care and looks at how care can be supported within wider organisational frameworks. Within the UK ideas around a culture of care have featured prominently in healthcare. The idea and importance of a culture of care within the UK’s NHS was the response to a series of failings in a Mid-Staffordshire hospital trust. Here, substandard care resulted in high mortality rates (Francis, 2013). The public inquiry report, the Francis Commission, which followed identified burgeoning pressures upon healthcare workers from management structures to cultures of bullying. The commission concluded that these contributed to failures to care for patients. The need to focus on a culture of caring was recommended as a way of sharing responsibility and recentring patient care. The NHS’ Culture of Care Barometer, which models a culture of care, developed from a series of stakeholder discussions, first as an early blueprint that could be used as a tool and later as the current ‘Culture of Care Barometer’. The Barometer builds upon themes that developed from interviews with staff from across 50 NHS Trusts, highlighting how commitment and engagement was linked to resources to deliver care, support, team work and career development (Rafferty et al., 2015, p. 13).

The Culture of Care Barometer is intended to be a reflective tool, acting as a probe for safety rather than being prescriptive. In many ways it acts as a starting point for discussions about an organisation’s culture through setting out particular components that a culture of care should have (Rafferty et al., 2017). First, a culture of care has effective management and leadership (see Dixon-Woods et al., 2014; West, 2013). Second, it is concerned with upholding staff engagement, and empowering staff to care (Francis, 2013; Manley, 2013). Third, it focuses upon collaboration within teams (Manley, 2013) and fourth, patient-centredness should be at the heart of decision-making (cf. Francis, 2013). Through these, care is made visible, and all within the organisation are accountable for it. The barometer’s components are aspirational, requiring ongoing commitment. In section 4, I return to what this might bring to research ethics review processes.

Whilst thinking about a culture of care has extended into animal research (Friese et al., 2019; Gorman & Davies, 2020) and to education (Cavanagh et al., 2012) it remains absent from discussions around URECs even though both medical and ethical research practices centre around a response to mistreatment. While a culture of care focuses upon relational and empowering accountability in which care is ‘everyone’s business’, URECs, focus upon controlling proceedings through paper protocols. These two approaches illustrate ways of responding to scandals and challenges, differing in who is considered accountable and what conversations are opened up (or closed down).

Neither approach offers a straightforward answer, and indeed controlling and caring processes might work together rather than separately, but what is particularly appealing in thinking about URECs through a culture of care is what it offers for being responsive to the needs of researchers and participants. Within a culture of care, care is seen to be the responsibility of Chief Executives, boards and senior management (Francis, 2013; Rafferty et al., 2015). The intention is that responsibility falls collectively, rather than solely on the shoulders of those directly performing care. For URECs, this presents an opportunity to rethink responsibility and the supportive networks that could be created and embodied through research ethics. A culture of care offers a way of bridging gaps between the different spaces that care takes place in, joining up the institutional, the personal and relational parts of research. I now consider why this is needed, and what some of the key features of a culture of care for research ethics might be, starting with five reflections drawn from my fieldwork. These illustrate the frictions, based upon my experiences (and my failings), that happened where the care occurring in practice was not always accommodated by the UREC. These were also likely amplified by my position as a PhD student, but I propose later that these experiences could have been better accommodated regardless of career stage by a culture of care. Highlighting frictions creates an opportunity to think about how to bring the institution and individual together in new cultures of care that encompass research governance and research practice.

Experiencing frictions: ethics and care in research practice

This series of reflections comes from a PhD project exploring how people with lived experience of MND engage with biomedical research. Whilst there is a desire to include lived experience in scientific research that is classified as ‘basic’ (i.e. research that looks at clinical diseases as single genes, models, markers and techniques), less attention has been given to what matters, sustains or undoes experiences of engaging from a patient perspective (cf. Caron-Flinterman et al., 2005; Gorman & Davies, 2020). The project involved interviewing 32 people with experience of MND (20 with those with MND, 12 with family members – partners, spouses and parents). These individuals lived across England and Scotland and varied in ages between 29 and 76. Our conversations took place, with two exceptions, in spaces where they lived.² I also undertook 22 observations of biomedical research events like research open days. Obtaining ethical approval was complicated and required seven resubmissions before being granted. The UREC requested resubmissions largely based upon how I had filled out the ethics form, or structured it – for example, asking questions about how I had structured a paragraph or a response letter, or because the committee used different terms that I had deliberately chosen not to include, like vulnerable. The time these resubmissions took had consequences that were sometimes significant like in James’ case which I introduced earlier.

Care in research is not always practiced lightly, easily, or indeed well. Soon after ethical approval had been granted, I observed a public open day at an MND research centre. The open day was composed of a set of talks followed by opportunities for questions. I was sitting at the back of the room during the talks, preoccupied by concerns that the posters informing those present about how I was observing the event had been blue-tacked onto open doors and so were invisible. After the last speaker finished, he turned to the room for questions. The first question came from someone asking whether there was a link between MND and exercise. They were concerned that, because they had run marathons, they had caused their disease. Part way through the person asking the question let out a wail and started crying. My nose went tingly, and I felt tears slide down my cheek. This upwelling of emotion caught me off guard. I knew emotion was part of research, as many feminist geographers have described (cf. Bondi, 2008; Dickson-Swift et al., 2007; Widdowfield, 2000). However remembering this in the moment had been overshadowed by concerns about the posters. Emotion sometimes crept up on me when I was least prepared for it. Becoming focused on ensuring I was caring ‘correctly’ rather than recognising the affectual ways that I was being moved by the research resulted in a sense of embarrassment for crying. This was amplified rather than improved by ethical approval processes for encouragement to consider care for oneself, as researcher, was absent.

Later, about half-way through my research I went to interview Jess who was living with MND. I arrived and knocked on the door of her flat but as she let me in, and I undid the laces on my trainers, she started to cry. She explained how she had been stuck in the flat for the last week and a half, unable to go out or to get food. A sudden progression of the illness had left her confined to her self-propelling wheelchair and she could no longer tackle the stairs independently using her walking sticks. We spent the morning working out how to navigate support through her specialist community nurse. Instead of an interview my questions revolved around what kind of food she wanted me to get from the supermarket. These questions were more urgent and responding to them took priority (see also, Olson, 2015). Responding to this situation felt in considerable contrast with the linear outline and flowchart of the research which the ethics committee had asked me to present. The pre-emptive nature of the outline did not envision the twists and turns that came from instances like going to Jess’ flat. I felt anxious that I had ‘broken’ the flow chart that had been required for ethical approval. Later in conversation with a colleague about the complexities of care I also worried that I might have overstepped my role, caring about making the situation better but in a potentially paternalistic way.

At other points during fieldwork similar concerns surfaced. Interviews were usually interspersed with making and consuming cups of tea with participants. Sometimes, I would make the tea or provide a spare pair of hands to get the milk out as instructed. But on one particular day, I joined Rob (whom I had been interviewing) and asked whether there was anything I could do to help. He screwed up his face taking offence at my offer. He replied shortly, stating he was neither dead nor stupid and that he could ‘bloody well make his own cup of tea’ without any help. Getting into the rhythm of offering to make tea had become a part of how I did interviews but in this I had become complacent without thinking carefully about how this offer might be received (cf. Tronto & Fisher, 1990). I had been conscious in my ethics forms about pushing back against using vulnerability as a blanket term for participants, citing Abebe and Bessell (2014) and Watson’s (2002) point that this inscribes an identity that might not match how those living with health conditions consider themselves. However, in failing to embody this in my approach, I had disempowered Rob. The remainder of the interview was not interspersed with the jokes and stories that he had shared in the first part of our conversation. I also felt overwhelmed by a ‘sense of failure’ that I should have known better (Rose, 1993). Several authors like Hallowell et al. (2004) have traced similar concerns, bringing together stories of researchers attending funerals and reflecting on disclosures of domestic violence in interviews, or the multiple kinds of care researchers might perform (Hanrahan & Smith, 2020). Care is a continual practice throughout research – it connects planning and ethics with practices of doing fieldwork. Emotions and relationships follow suit. Without envisioning or recognising this connected nature, emotions and relationships can be marred with uncertainty.

Other times, participants reminded me that people involved in research also give care. As I went to leave her house after her interview, Elosie handed me some chocolate and banana muffins for the journey home. She also insisted I take her umbrella as it had started to rain. Leaving her house as both a researcher and guest, Eloise’s provisions amplified the relational aspects of care. Care might be enacted by participants through giving their time and energy, or perhaps through providing muffins like Eloise did. Yet these acts felt forgotten within an ethics process that focused upon (potential) harm caused rather than seeing care as reciprocal and relational. The act of bundling muffins into my hands also reminded me that I was both a researcher as well as guest within her home in the ‘micro-space’ of interviews that Elwood and Martin (2000) describe. This sense of care as relational continues in the final prose below, depicted through the temporalities of leaving the field.

I chose to contact participants once after their interview with a follow-up card and some initial findings posted out or emailed. Several got in touch again after to send short notes and to share photographs of grandchildren, graduation photos, and celebrations that we had talked about in interviews. The generosity of this sharing, often many months after I had sent findings and ‘left’ the field, was touching. While it might complicate the notion of leaving, it illustrated how relational care continues after the period of the project for which ethics has been approved. Along with such messages of celebrations there continue to be emails from spouses and partners that I had met in interviews informing me about participants’ deaths. I was concerned at first that perhaps, like some of the clinical research they were part of, these family members felt they had to inform me. But the messages remain framed in terms of wanting to recount a story, something that happened in an interview, or of just ‘wanting to let me know’. Leaving the field is most often discussed in the context of longitudinal research, drawing out a careful charting of disengagement and leaving (see Hall, 2014; also Morrison et al., 2012). Even in single interviews, I found drawing boundaries around the research difficult. It was not a straightforward process of leaving the field and stopping caring, instead, care and concerns about ethics might continue and endure (McGarrol, 2017). The question which remains then is how this could be better supported.

Towards a culture of care for ethical review

Through these five instances I stumbled over how best to care well in ways that tried, but often failed, to follow the processes that UREC set out. Caring about what groceries Jess wanted me to buy, receiving emails informing me of deaths, or through Eloise’s umbrella and muffins highlights the many ways that care (and concern) is enacted (; Murphy, 2015). Throughout these moments my attempts to act with care demonstrated the distinction between the practice of doing and the approval process, which set out an illusion of neat edges around parts of the project. Care has a role to play in illustrating these gaps, but also in potentially filling them in.

A culture of care for UREC needs to be attentive to considerations of spatiality, relationality and temporalities of research. Considering spatiality, the spaces of research differ between the institutional UREC’s and the practices of doing fieldwork; the former are distanced from the latter. Indeed, doing fieldwork positioned me alongside participants, sharing spaces and having conversations that were sometimes light-hearted and sometimes deep and difficult. The affect of notices of deaths and of urgent needs like having food become apparent because of the closeness in which I encountered participants. Smith’s (2000, p. 93) suggestion that ‘distance leads to indifference’ is partial and problematic. However, perhaps it is through distance that it becomes possible to pay less attention to emotional and caring intensities at the institutional scale of the UREC. A lack of attention matters because it impacts upon the support for researchers and how responsibility and affects of care feel individual. Failing to recognise this in formal processes means that the weight of care is sometimes carried heavily rather than collectively.

Several of the moments above emerged or intensified because of where conversations happened – in people’s homes. The reflections on causing offence because of a cup of tea or receiving muffins, occurred because of where we were. Undertaking research in homes is appealing because of the convenience these spaces offer or methodologically, reducing power imbalances (e.g. Bashir, 2018). But unlike the paper forms of ethical approval that might consider the safety of being in these spaces, home spaces also enable or impede particular kinds of care. These spaces made visible needs that might otherwise have been hidden and blurred my identity as researcher and guest. Elwood and Martin’s (2000) discussion of the micro-sites of research and power dynamics in homes might also be extended to consider care. This care is not the same as the paid and unpaid care that geographers often explore within home-spaces (notably, Bowlby, 2011, Dyck, 2005 & Milligan, 2005). Instead, care might exist in fieldwork through temporary moments of being together as researcher and participant, host and guest. My research experiences illustrate how homes are spaces of care in research, both that which is unwanted and disempowering as well as that which is reciprocated.

A culture of care is also based around relationality. This is relevant for (re)considering the role of the researcher within ethics processes. Current UREC practices tend to leave researchers absent, contextualised against a much wider critique of care in higher education; as Atkinson et al. (2011) suggest, academic institutions do not always care well about researchers within them (see also Askins & Blazek, 2017). The omission of the researcher from ethics processes sits counter to an understanding that care takes place between bodies, as an ‘ontology of connection’ (Lawson, 2007). Including the researcher might offer a way of formally acknowledging that researchers can affect relationships and research, or that they might also be affected by it. The presence of emotion in offering to make a cup of tea, or in crying during an observation marks clashes which might have been better supported through an encouragement to consider my responses to encounters and how these might be received. Learning from a culture of care that places an emphasis on supporting those delivering face-to-face care (here, through research) offers something appealing in formalising and realigning responsibility as being collective, rather than something to be dealt with quietly and individually.

Sometimes though failures to care in ways that were desired by participants or potential participants were collectively mine and URECs. I failed to account for what making a cup of tea might mean to Rob, and what boundaries I was crossing. Like URECs categorising of groups of participants under labels like ‘vulnerable’ my actions were similarly disempowering and ignored the reciprocal nature of care. Thinking with care is helpful at allowing the affective, responsive and indeed discomforting parts of care (and concern) to be recognised as part and encompassed in our actions.

Caring also concerns temporality. Temporalities were tied to the specificities and progression of MND. Situated against delays in ethical approval processes. James’ story that opens this paper illustrates the consequences of waiting in circumstances of urgency – in terms of life left to live. Olson writes how ‘waiting can be productive or unproductive for radical praxis, but urgency compels and requires response’ (2015, p. 523). Whilst waiting for ethical approval is unavoidable and might be valuable in giving time for reflection, it also risks doing harm. Here, it determined who could or could not take part, regardless of James’ enthusiasm to be involved before he died.

These three considerations intersect and co-exist too. For example, Jess being unable to leave her flat required urgent action, but it only became visible through being in particular spaces. This could not have been predicted by any UREC but might have been better supported and prepared for through a relational and situated approach to care. Acknowledging gaps opens up space for thinking about a culture of care which joins research ethics together. Goodwin (2018) argues that challenges arise for care when institutional cultures operate separately from one another. Thinking about care in research as being connected and everyone’s business provides a way of connecting silos of the institutional, personal and relational (Rafferty et al., 2015). Much more work is needed to unpack what a culture of care for research ethics might look like in practice. This would involve working with researchers (at different career stages), those on ethics committees most familiar with guidelines and legislation, and with research participants themselves.

In recognising the needs for this participatory approach, my suggestions below are tentative. Borrowing from the Culture of Care Barometer, set out in section 2 (Rafferty et al., 2017), I reflect upon what key features might be involved in a culture of care for research ethics. These are intentionally broad, offering space for conversation as well as interpretation that accommodates heterogenous and diverse nature of URECs. In doing this, I am not suggesting that all UREC processes lack care or do not already embody these principles. Instead, I propose through these five suggestions that collectively, more can be done to think about care in research ethics framework(s); compassion, supportive management, relationships and collaboration, constraints and burdens, and the spatialities of care.

First, a culture of care would see URECs as built upon compassion. This involves making the goal and processes of ethics clear for everyone. Like the culture of care promoted in the Francis review, this should place an emphasis on listening and repeatedly seeking conversation and feedback. It enables a more compassionate way of thinking beyond researchers as the deliverers of a research project and instead upon them as actors too. A compassionate ethics should be about caring about those who care.

Second, a culture of care centres upon care as being ‘everyone’s business’ (Rafferty et al., 2015). This requires a structure where senior management also hold responsibility for care in research, lessening individual challenges when research acts differently than on paper (Horton, 2008; Pyer, 2008). As Goodwin (2018) pointed out, culture does not work well in a silo, but is instead connected: ethics is connected to wider research cultures. Support systems that bridge gaps between the individual and institutional might assist with normalising and supporting feelings and emotions that individuals may worry about. Establishing these support systems requires institutions to allocate resources and create time, rather than simply adding more to workloads. It is necessary to build conversations around care into ongoing discussions around improving research cultures so that change is collective and supportive rather than adding more to individual challenges and burdens (cf. Wellcome, 2020).

Third, a culture of care for ethics depends upon relationality. Whilst current ‘corridor conversations’ around research ethics are well known, an approach centred upon a culture of care would consider collegial collaboration as part of ethical review processes. Countering hierarchies and moving towards flatter structures and openness allows ethics to be brought into these conversations more. An ethical approach that is collaborative and relational might move beyond a ‘we’ versus ‘them’ scenario. Like the point above, embodying this institutional culture of care requires wider culture shifts, in this case from competition to support; for instance, in matching up researchers with ethical mentors, and fostering practices of caring for researchers as colleagues.

Fourth, a culture of care accounts for and recognises constraints and burdens. This means creating an environment in which the challenges of research can be discussed. Rather than being held by individual researchers or within small teams, a culture of care might provide the space to have these conversations more openly. I would at least have worried less about making mistakes. Going beyond recognising the affective-emotional burdens of research, URECs might also offer a way of legitimatising this, through actions like accommodating the impact of research on researchers in ethics forms and institutional discussions.

Finally, fifth, a culture of care might consider how care is variable but connected through the spatialities of care. The spaces of institutions and governance structures of URECs are situated away from the directly personal and relational work that takes place amongst those involved in research. A UREC which envisions care collectively should also do so spatially, attentive to how ethics extend throughout research, from paper proposals to being emplaced within research. In my moments of care discussed in the previous section, space mattered to each, whether embarrassment at crying at a talk, or giving and receiving care in more intimate home spaces. A culture of care for URECs that is situational and encourages thinking about how and where research takes place might be better able to attend to these affective dilemmas. Otherwise these decisions will continue to be dealt with by individual researchers, remaining invisible and separate from governing institutions.

Conclusions

Unlike the established templates of URECs, care in research is always responsive, multiple and sometimes, urgent. This paper has started to explore what a culture of care might offer as a situated, temporal and careful way of approaching and remedying some of the ongoing concerns and critiques of URECs. Following my five fieldwork reflections, I suggest the disconnected and prescriptive nature of the UREC might be addressed by an ethical approval process built around a culture of care, which focuses on compassion, support, relationships, constraints and situation. Without such a culture, I found the gaps filled with my own uncertainty.

A culture of care is not a solution, but rather, when grounded in a feminist ethics of care, offers a way of being more attentive to the affects, situatedness and emotions of caring within research. As De la Bellacasa (2017, p. 1) writes, to care ‘can feel good, but can also feel awful’. As the moments above illustrate, the current practices surrounding research ethics mean that the interactions within spaces are not always cohesive nor work together, but instead collide and lead to gaps that create space for potentially deep-seated and opposing tensions.

Furthermore, despite its increasing focus on a culture of care, the NHS sometimes still fails to provide what might be deemed as ‘good care’.³ The NHS culture of care remains an aspiration and potential framework for evaluation (Rafferty et al., 2015, 2017). Reasons why aspirations for a culture of care might not result in effective care within the NHS include inadequate government spending, stretched staff, and neglected preventative services. It also takes time for conversations about cultures to develop and change.

When resources are stretched, and governance structures fail to listen to those healthcare professionals doing care work ‘on the ground’, these failures become worsened. Higher Education is also affected by government funding decisions and institutional decisions around precarious working conditions and stretched staff. What might be learnt from other cultures of care is that principles should be broad, and individual institutions and departments should be empowered to develop these in ways that best suits circumstances. These principles must also be continually revised in response to those ‘delivering’ research. A culture of care is idealistic. However, what it does offer is a space to open up conversation and to strive for greater pockets of support and care, both for those doing research, and those affected by it.

Ongoing and unsettled conversations around current research cultures and UREC processes create a timely context to bring ethics into wider conversations around developing positive research cultures. There are several outstanding questions around how a culture of care for ethics might be measured and evaluated, and how it might avoid becoming another strategy embedded in bureaucracy. However, a culture of care for research ethics might offer a hopeful way to explore whether and how ethical processes can better support researchers and participants, or at least open up discussion. This involves wider institutions too, and a move from thinking about measures of excellence as being solely determined by promotions and publications, but rather, as being about caring.

Funding Statement

This work was supported by the Chief Scientist Office [SPRINT-MND/MS PhD scheme (reference MMPP/01)].

Disclosure statement

No potential conflict of interest was reported by the author(s).