In Pursuit of Ethical and Inclusive Research: What Ethics Committees and Disability Researchers Can Learn From Each Other

Abstract

Across disciplines, qualitative researchers have documented epistemological and practical tensions in the ethical review of community-based and participatory research, with many arguing that ethics committees’ decisions perpetuate the exclusion of marginalised communities from research engagement. In the existing literature, the research team and the ethics committee are often characterised as staunch opponents. Conversely, in our recent qualitative research addressing communication about sexuality with young people with cerebral palsy who use communication methods other than speech (augmentative and alternative communication), we found that constructive collaboration between researchers and committee members yielded novel insights. Co-authored by a multi-disciplinary research team and the former chair of a Human Research Ethics Committee, this reflexive case study identified three key tensions which arose in the ethical review of research involving this purportedly marginalised population, which reflected the wider importance of trust. We propose a series of practical recommendations to support productive collaboration in the pursuit of safe, inclusive and community-driven research.

Plain language summary

Introduction

In Australia, researchers follow rules and policies to make sure their research is safe, fair, and correct. Before a research project starts, a group of experts called an ethics committee checks the researchers’ plan, to make sure it is safe. Sometimes, ethics committees are worried that people with a disability could be hurt or upset by a research project. To protect people with a disability, ethics committees may say:

• that the research activities need to change, or

• that children with disability or people with intellectual disability can’t participate in the research, or

• that other people (e.g., a parent or guardian) should always give their permission for the person with a disability to participate.

Sometimes these changes are sensible and safe. But sometimes they make research unfair or hard to access for people with a disability. This is frustrating when a research plan has been designed by people with a disability, or by people who know them well.

What We Did

We did research with young people who have cerebral palsy who use methods other than speech to communicate (like gestures, communication books, or communication devices). Our research was about private topics like relationships and sex. When we applied to do our research, the ethics committee had lots of concerns. They asked us to change a lot of things. They even asked us to change some of the things that people with disability told us they wanted or needed. It was a long and frustrating process. We talked with the leader of the ethics committee and decided to write this article together. We wanted to help other researchers, ethics committees, and people with disabilities to work better together.

What We Found

It is important that people with a disability be included in research that is fair and safe. Ethics committees have a big responsibility to keep people safe, but the experts who work on an ethics committee may not know a lot about disability. Stories and videos of people with disabilities participating in research can help the ethics committee to understand what is possible. Ethics committees can also talk to people with a disability, to learn more about their research needs and experiences. All research participants with a disability are unique. Every person will have different risks and different needs. Some people will have more than one accessibility need. For example, a young person with physical disability like cerebral palsy may also have difficulty reading and may not use speech to communicate. When ethics paperwork asks about each need separately, it can be hard to explain how a person with a lot of access needs will be supported. When research participants have complex needs, ethics committees can feel confused and worried. If this happens, they should have a conversation with the researchers about it, instead of saying “no” to the research. Sometimes researchers want to use special or creative research methods to involve people with disabilities. These need to be explained clearly, so the ethics committee can trust that they are safe. Researchers and ethics committees can also use research rules and resources that are created for, and by, people with a disability. These are written by large organisations like the International Association for the Scientific Study of Intellectual and Developmental Disabilities (https://iassidd.org/). By following these steps, we think that research can be safer and more inclusive for everyone.

Contact

If you want more information about this article, you can email Megan Walsh at [e-mail].

Introduction

Human Research Ethics Committees (HRECs) are rightfully concerned about the potential for research to cause harm, with rigorous ethical oversight aiming to ensure high standards of autonomy, non-maleficence, beneficence, and justice in research. Indeed, guidelines such as the Nuremburg Code and the Helsinki Declaration—to which contemporary research ethics review processes can be traced—arose in response to grievous instances of unethical research including Nazi experimentation on minorities in World War Two, and the infamous Tuskegee Syphilis Study on rural black men in the United States (Gorman, 2011). Nonetheless, precautionary actions designed to protect people with disabilities and other populations labelled as “vulnerable” from research harm may in fact perpetuate their exclusion from meaningful research engagement (Northway, 2014), thus presenting disability researchers and research ethics committees with a complex practice dilemma. While the resulting tensions are often described in terms that pit ethics committees and disability researchers against each other, the pursuit of genuinely ethical and inclusive research requires more productive dialogue both between and within these groups. Additionally, progress in inclusive, participatory research demands both heightened attention to the broader institutional contexts within which both researchers and committees are situated, as well as recognition of shared interests, concerns and challenges.

People with disabilities are often described as “vulnerable” in the context of research participation, and a growing body of scholarship also speaks to the scope of their exclusion from research. This varies according to the perceived degree of disability; for example, Doody (2018) observed that participants with mild intellectual disability are more likely to be actively engaged in research than those with complex disability, and called for creative and imaginative approaches to ensuring the participation of people with all levels of disability in research that concerns them. Augmentative and alternative communication (AAC) refers to all communication other than speech (Ogletree & Pierce, 2010; Speech Pathology, 2016). AAC can be used to support expressive communication, understanding, cognition and behaviour (Ogletree & Pierce, 2010). AAC users are likewise often excluded from participation, even in general disability research (Dee-Price et al., 2021; Taylor & Balandin, 2020). McDonald and Keys (2008) argued that research studies that exclude people with disability risk perpetuating misconceptions and limit our understanding of the experiences and needs of this population. This reinforces the marginalisation of people with disabilities (Northway, 2014). Exclusion from participation in research, in turn, impacts knowledge translation into clinical practice, leading to what Shepherd described as “evidence biased care” in Treweek et al. (2022).

In this paper, we collectively explore opposing tensions of inclusion and protection in disability and participatory and community-driven research. While disability researchers and ethics committees are often understood as antagonistically-positioned sets of actors, we argue here that they reflect divergent impulses within a complex, multi-valent field of research ethics that researchers and ethics committees alike must negotiate. On this basis, we propose practical strategies for more productive engagement between ethics committees and researchers, their hosting institutions, and the communities they serve, in their shared pursuit of ethical and inclusive research.

Background to Our Collaboration

The origins of this collaboration lie in our interactions with one another in the context of the ethical review of lead author MW’s PhD research, which involved adolescents with cerebral palsy who use AAC and their parents or guardians. The research objectives of MW’s PhD study were to understand the experiences, wants and needs of both adolescents and their parents or guardians in communicating about sexuality, and then, together with the adolescents and parents or guardians, to share those understandings with other stakeholders. Project design and delivery were informed by the diverse professional experience of the research team: as speech pathologists MW, JW and KA have accrued five collective decades of specialist practice in AAC, while SS and AO have extensive specialist expertise in sexuality research relating to adolescents and people with intellectual disability, respectively.

MW’s research followed a Participatory Action Research (PAR) paradigm, an iterative approach which was driven by her research participants and a community advisory group of people with cerebral palsy who use AAC as well as parents of young people with cerebral palsy who use AAC. As noted above, AAC users are often excluded from participating in research, so their inclusion was a central tenet in MW’s doctoral research. The protocol involved individual interviews with adolescents with cerebral palsy who use AAC scheduled across four to six individual interview sessions, followed by a “choose your own adventure” bricolage (Kincheloe, 2011, p. 60) approach to participatory research, wherein the young person could choose from a list of five qualitative research methods (including arts-based and narrative approaches). These were tailored to the priorities, interests, and access needs of each adolescent. Individual interviews were also conducted with parents and guardians of adolescents with cerebral palsy who use AAC, followed by focus groups with those parents or guardians to identify knowledge translation priorities. In addition to seeking parent or guardian perspectives, these interviews offered preparatory insights about the adolescents’ communication access needs and contexts ahead of engaging the adolescents. They also afforded an opportunity to build trust with parents and guardians who, as primary communication supporters for their children, could both facilitate but also potentially gatekeep young people’s participation in the research, as Dee-Price (2023) describes in their discussion of communication assistants and qualitative health research.

Ethics Review of MW’s Research – A Challenging Experience of Ethics Review

The nature of MW’s research required a higher-than-low-risk ethics review pathway. Although ultimately positive, the review process was complex and protracted, involving many moments of mutual frustration between researchers and the Human Research Ethics Committee (HREC) members. The process took nine months and involved formulation of a second Human Research Ethics Application (HREA) and multiple rounds of smaller revisions, meetings with the HREC Chair (VS) and committee members, and the creation of supplemental materials. Core concerns from the HREC centred around the ethical suitability and feasibility of engaging this population around issues to do with sexuality, the potential to trigger memories of sexual abuse or assault in adolescent participants, privacy concerns between adolescent participants and their parents or guardians, consent and assent processes, and the iterative nature of the co-designed protocol. While this process was difficult, the research team and the chair of the HREC (VS) formed a productive relationship that allowed us to work through the tensions and differing understandings.

An Opportunity for Collaborative Reflection

Once approval was granted, MW and her supervision team invited VS to co-author a practice reflection on the process. VS brought five years’ experience as a committee chair/deputy chair to this reflection. Throughout the review process, VS’ own anthropology background also laid valuable common ground for the group’s discussions of open, iterative methodologies and community-responsive ethical principles.

The co-authoring process centred around the following question: “What tensions emerge in seeking ethical approval for research seeking to involve historically excluded participants, and how can researchers, committees, and institutions respond to these in pursuit of ethical practices?” To date, the perspective of ethics committee members has been largely absent from critical writing about project approval processes, making the collaboration with VS unique and potentially impactful.

Our process of formulating a shared analysis has been iterative and organic. We held, and carefully documented, regular meetings to reflect on the review process from our diverse disciplinary perspectives. The tensions, themes and strategies mapped below were developed from that process of reflexive dialogue to cohere a shared understanding. We also critically analysed the identified tensions, themes and strategies with respect to existing literature on HREC-researcher interactions, as well as supplementary artefacts including submission files and correspondence received from the HREC about the project, and governance materials. This included, particularly, the National Statement on Ethical Conduct in Human Research, which is the guiding document for the administration of Australian research ethics review (herein, “the National Statement”). We did not analyse the confidential documentation exchanged between HREC members as part of the assessment. We submitted a separate ethics application to secure approval for this approach, which included responding to potential conflicts of interest.

This paper begins by familiarising the reader with the broader context of human research ethics review. Following this, we examine three key tensions which we identified through our collaborative analysis. We conclude with practice considerations for researchers, ethics committees, and their hosting institutions.

Situating Human Research Ethics Committees

An extensive body of literature already documents tensions between ethics committees and researchers, including in the disability, sexual health, and community-based research and PAR disciplines (Cross et al., 2014; Hannigan & Allen, 2003; Hedgecoe, 2012; Johnson et al., 2019; Malone et al., 2006; McMurphy et al., 2013; Nuwagaba & Rule, 2015; Taylor & Balandin, 2020; Van Goidsenhoven & De Schauwer, 2022). McMurphy et al. (2013) acknowledge the sometimes “us versus them” nature of qualitative researcher – ethics committee relationships, a conceptualisation that risks the foreclosure of more productive relationships. Several of these authors call for collaboration between researchers and ethics committees, a call that we seek to enact in practice in this paper. In doing so, we also argue for greater attention to the institutional and practice context within which ethics committees and researchers meet.

If interactions between disability researchers and ethics committees have often reflected a push-and-pull between competing imperatives of protection and inclusion, we can also observe significant tensions at play in relation to the membership, purpose, knowledge, and functioning of ethics committees themselves. Recognising these tensions complicates the homogenous characterisation of ethics committees in the critical literature, as well as the often-homogenous ways in which committees are experienced by researchers themselves, who typically have little exposure to the “backstage” (Hedgecoe, 2012) work of ethics review processes. Below, we identify three points as particularly salient to our own practice reflection which follow: firstly, heterogeneity within committees in terms of their membership and functioning; secondly, the wider context of research ethics and research governance, of which ethics committees are only one (albeit, often the most visible) component; and thirdly, competing understandings of the purpose of ethical review, including tensions between the facilitation and academic review of research, and functions of institutional risk-management and compliance. We suggest that attending in more nuanced ways to the dynamics at work within and behind ethics committees opens new possibilities for thinking about ways and places in which diversely situated actors can work to support the ethically rigorous inclusion of traditionally marginalised populations in research.

Firstly, ethics committees are not internally homogenous. Under the terms of Australia’s National Statement, HRECs must include researchers, pastoral care members, members with professional health expertise, lawyers, as well as lay members representing a ‘community’ or ‘consumer’ perspective (National Health Medical Research Council, 2023, p. 5.1.30). HRECs reviewing research about Aboriginal or Torres Strait Islander people or communities need to also include a member with specific expertise in such research, although this member need not necessarily be Aboriginal or Torres Strait Islander themselves, and lived experience perspectives are not currently mandated in relation to other categories of participants. The membership of committees is therefore varied and diverse, entailing multiple perspectives and forms of lived experience that committee members bring to collective deliberation and decision-making, which is typically by consensus.

In relation to disability, the make-up of ethics committees also means that they reflect the diverse, sometimes uneven distribution of opinions, knowledge and experience of disability within the wider community. In our experience, HRECs are more likely to include disability supporters (e.g., family members and treating professionals) than people with direct lived experience themselves, particularly with respect to younger people, individuals with intellectual disability or AAC users. Although supporter perspectives can be insightful, their views do not necessarily reflect the communities they support. For example, McDonald and colleagues (2016) surveyed how adults with intellectual disability, supporters (family members, friends and service providers), researchers and/or ethics committee members viewed a range of safeguards for research. While participants agreed on many of the commonly implemented research safeguards around decision making and participation, people with intellectual disability responded differently to matters around recruitment and consent. McDonald and colleagues wrote that “adults with intellectual disability indicated that learning about a study from someone they trust, service providers, people with disabilities, or researchers was safer than several other groups perceived these recruitment strategies to be” (2016, p.433). Participants with intellectual disability called for researchers and ethics committees to take their views into account when evaluating research that involves them (McDonald et al., 2016).

Secondly, while ethics committees are often the most immediate and visible “face” for researchers of human research ethics review, they are in reality only one component of a wider ecology that shapes the ethical review of research. This ecology includes the guidelines underpinning ethics review (in Australia, the National Statement on Ethical Conduct in Human Research, issued by the National Health and Medical Research Council (NHMRC) and applicable to all research at institutions that receive federal government funding), legislation (Privacy Legislation, e.g.), and university-specific leadership, policies and procedures, and cultures relating to research and research governance. This wider ecology of human research ethics review entails multiple components and actors, as well as ethical principles, values, and imperatives which can sometimes pull in different directions, and which are not always easily reconcilable. In their analysis of the four-year process of review and consultation preceding the release of the 2007 version of the National Statement, for example, Goddard and Dodds identified a key axis of debate around the “appropriate balance between the values of respect for autonomy and paternalistic protection of the vulnerable” (2016, p. 197d). Focusing on the particular example of research involving children and young people, Goddard and Dodds showed that these debates reflect diverse ethical perspectives in relation to such research, particularly including the requirements for consent in research with this cohort, with the 2007 revised National Statement ultimately reflecting an attempt to balance these competing positions. The result, they argued, was a document “more subtle and nuanced” than the version that preceded it, but also more complex, and with “greater ambiguity for researchers” and “limited guidance for HREC members” who are called upon to interpret and apply it (2016, p. 219).

More broadly, the increasing length and complexity of ethics processes and guidelines, the resultant increase in the complexity of ethics applications, and the increasing workload of ethics committees have been noted across the period since the NHMRC Statement on Human Experimentation and Supplementary Notes were inaugurated in 1992 (superseded by the National Statement in 1999) (Dodds, 2000; Gorman, 2011). Professional ethics administrators and advisors also play a significant role in the operation of ethics review, including in interpreting guidelines and creating resources, forms and templates through which these guidelines are enacted. This increasing professionalisation and complexity in research ethics review reflects what Guillemin and Gillam (2004) characterise as the dominance of a “procedural” approach, which leans towards the standardised application of procedures and documentation, which they contrast with complex, situated, and embodied “ethics-in-practice.” The push towards standardisation can, in turn, be situated in the context of a broader orientation within universities towards compliance-based, risk-averse and techno-managerial approaches to research (Woelert, 2023; Woelert & Yates, 2014), within the “audit culture” dominating modern society (Strathern, 2000; also Chiumento et al., 2020).

Thirdly, there is an identifiable tension about the purpose and function of ethics review itself. Gorman (2011) identifies “governance creep,” in which ethics committees are increasingly charged with responsibility for elements of research governance (rather than research ethics), including considerations of financial accountability, data management, academic integrity, and privacy legislation. Gorman posits a fundamental tension between ethics and governance, with “governance creep,” she suggests, fuelling the risk of more adversarial relationships between committees and researchers, as the role of committees increasingly resembles that of enforcer and auditor, rather than critical advisor. Nevertheless, acknowledging the heterogeneity within committees themselves, and within the wider ecology of ethics review, Gorman cautions against reductive assumptions of alignment between ethics committees and the increasingly compliance-focused institutional cultures within which they operate (2011).

Tensions in Ethical Review

Here we discuss three key tensions which we identified through our collaborative analysis:

(1) categorical vs. contextual approach to vulnerability;

(2) a priori vs. dynamic methodological rigour; and

(3) participation as individually bounded versus relationally situated.

Figure 1 These three tensions are nested within the broader, overarching tension between inclusion and protection in relation to research with people with disability. Significantly, and as we demonstrate below, these do not map straightforwardly onto a divide between researchers (on one side), and ethics committees (on the other). Rather, as seen in our practice reflection and more broadly in ethics review, aspects of these tensions can be experienced and negotiated by both parties in the pursuit of safe and inclusive research.

Figure 1.

Navigating key tensions on our path to safe and inclusive research.

Categorical versus Contextual Approach to Vulnerability

The guidelines underpinning research ethics review in Australia utilise a categorical approach in describing and assigning vulnerability—that is, whole groups and populations are classified as vulnerable on the basis of qualities or circumstances attributed to them (Gordon, 2020). The National Statement identifies specific groups of research participants as vulnerable, including: children and young people; pregnant women and human fetuses; Aboriginal and Torres Strait Islander peoples; people with a cognitive impairment, an intellectual disability, or a mental illness; and others (National Health and Medical Research Council et al., 2023, chap. 4). In our case-study, the participants in MW’s research included people who potentially met two of the categorical criteria for vulnerability: children and young people, and those with an intellectual disability.

Perhaps unsurprisingly, concerns about vulnerability were pronounced in the HREC’s discussions and in subsequent feedback to MW and her supervisors. Of particular concern to some members was the engagement of participants around issues related to sexuality, deemed in the logic of the ethics guidelines as a priori “vulnerable.” This emphasis on, and conceptualisation of, vulnerability was at odds with understandings held by the research team and advisory group, formed through their extensive clinical, academic, and lived experience.

From the outset, MW and her supervisors were aware of the well-documented social norms, misconceptions and assumptions surrounding adolescents, sexuality and people with disabilities. For example, conventional sexuality education is often focussed on the prevention of risk behaviours, a protective stance resonant with the risk-mitigation approach within ethics review processes (Ollis et al., 2019). Research with adolescents, however, indicates their interest in more positive aspects of sexuality and relationships (Johnson et al., 2019; Ollis et al., 2019; Sawyer & Begun, 2023). People with physical or intellectual disability or cognitive impairment may experience the impact of infantilising discourses in their interactions with researchers, with the same ideas of “eternal children” impacting on others’ perceptions of their sexuality. Gordon argues that such societal attitudes can make research participants more vulnerable, explaining that: “social vulnerability is a function of the social perception of certain groups, which includes stereotyping and can lead to discrimination” (2020, p.36).

The categorical approach to vulnerability is, as Gordon notes, particularly ill-suited “for situations in which a person has multiple vulnerabilities, such as a pregnant minor or a cognitively impaired homeless person” and also struggles to “account for variation in the degree of vulnerability within the group based on individual characteristics” (2020 p. 35). In their responses to the research team’s ethics application, the HREC identified a number of risks related to the participation of younger adolescents (10–14 years old) in this research, ranging from the provision of “age-appropriate” participant information to the duration and number of individual interview sessions. Requested revisions included the development of separate Plain Language Statement and Consent (PLSC) forms for younger participants, distinct from that targeting 15 to 18-year-olds. While this request correctly recognised the significant variations in experience, understanding, and communication capacity that can exist between, for example, a 10-year-old and a 17-year-old, the singular emphasis on this variable (age) was nevertheless at odds with the complex and multiple axes of variability informing the positionalities and conditions of vulnerability among MW’s eligible participants, within which age intersected with a number of variables including expressive communication ability, nature of the young person’s AAC systems, social experiences surrounding sexuality, and need for and presence of a communication supporter. Many of these variables are illustrated in Figure 2 below. In keeping with the categorical approach to vulnerability, the HREC’s request for differentiated forms for the younger age group had the effect of creating a new sub-category of “younger adolescents,” preventing appreciation of the nuances, intersectionality, and heterogeneity of the participant population.

Figure 2.

Intersecting and dynamic contextual vulnerabilities for adolescents with cerebral palsy and complex communication needs.

These limitations are intensified through the administrative organisation of ethics application forms, which prompt researchers to separately address issues in relation to particular groups deemed “vulnerable.” In our case, the ethics application process required the research team to identify strategies to mitigate risks for people under 18 years old and people with intellectual disability separately, and offered little opportunity to address the way these factors might intersect. This produced a fragmented representation that did not capture the complexities of the research participants, and was received and interpreted by the HREC as confusing and disjointed. The team’s expert, informed, and evidence-based understandings of vulnerability were not communicated to the HREC because the nature of the categorical approach does not ask researchers how vulnerability is experienced within the specific contexts of their research, but rather poses questions within which very particular understandings of those things are already assumed.

Meeting with VS, the HREC Chair, was the catalyst for mutual understanding of these intersectional complexities by enabling the research team to articulate key aspects of their integrated approach to risk-mitigation that had not previously been communicated. Inspired by the Wheel of Power/Privilege (Duckworth, 2020), MW developed the wheel figure (Figure 2) to demonstrate to the HREC the many dynamic and intersecting factors which the research team felt must be considered for ethical research with young people with complex communication needs. Instead of the categorical approach assumed within the ethics application forms and guidelines, the model illustrated a contextual approach that was intersectional and dynamic, enabling more nuanced responses to potential vulnerabilities and capacities within the participant group.

A priori versus Dynamic Methodological Rigour

A second tension centred on the open, iterative, and responsive methodological approach utilised in MW’s PhD research. To confidently approve research, HRECs request and require detailed research protocols. While this prospective provision of approval is in many ways taken for granted within the review process, it encodes a procedural understanding of ethics (described above, Guillemin & Gillam, 2004), in contrast to an understanding of ethics-in-practice. This can lead to a privileging of procedures and documentation outside of, and bureaucratically abstracted from, the actual doing of research and research ethics, an effect compounded by the valorisation of standardisation within neoliberal universities and modern “audit cultures” (Chiumento et al., 2020; Strathern, 2000). Practically, the granting of prospective ethics approval requires that ethics committees can envisage a clear sense of what the research will entail. Providing this vision can become particularly difficult for researchers utilising responsive, iterative, and creative methodological approaches.

In our case, MW’s ethics application included reference to interviews followed by the option to participate in multiple research activities (including arts-based and narrative methods). Each proposed activity was appropriate for the theoretical framework, research questions, and population, and each included a number of options for modification. For example, some participants were likely to benefit from the use of a Talking Mat™ during the interviews. Talking Mats™ are a visual conversation and decision-making structure which can reduce motor, communication, and cognitive demands on the participant (Mats Australia, 2022). The participants (and MW) were also able to decide the length and number of individual interview sessions based on the participant’s access and support needs, as well as their fatigue and interest in ongoing engagement.

From the perspective of the research team, the flexibility in this protocol reflected best practice in inclusive disability research approaches (O’Brien et al., 2022). Customised approaches seek to position people with disability as more than passive subjects of research (Johnson & Walmsley, 2003). They may draw on elements of ethnographic, action research, participatory research or co-design principles, at times creating what Kincheloe (2011, p. 60) called a bricolage: an emerging, evolving and critical approach that allows for the examination of phenomena from multiple and at times competing perspectives (Rogers, 2012). The proposed protocol offered an ethical and appropriate response to the complexity of participants’ communication and lived experiences, by constructing active roles for them as decision-makers.

From the perspective of the HREC, uncertainty about which of these diverse methods would be implemented when, and on what basis, added to a general sense of confusion about the research design. Discussion in the “backstage” (Hedgecoe, 2012, p. 666) of the HREC’s deliberations, and feedback to the research team, reflected that (a) the Committee could not clearly see how the research was going to unfold, and (b) without such clarity it was not possible to grant prospective approval. A key sticking point was the evaluation and mitigation of risk in the context of this perceived lack of clarity. This tension was magnified by the format of the HREC paperwork, as the forms did not allow the research team to describe the participant experience from start to finish and illustrate how decisions would be made at the key decision points.

The HREC’s response was to seek more a priori information, including a table with extensive detail of the possible risks and mitigation strategies for each potential research activity. Creating this table proved difficult for the research team to complete given the participant-driven and modifiable nature of each activity. Instead, meetings between the HREC chair (VS) and research team allowed more informative discussion about the research design and process, and the contextual approach to risk identification and management.

Three further factors here are salient. Firstly, the HREC Chair’s own research expertise in, and familiarity with, iterative methodologies provided an important basis for shared understanding with the research team. This observation highlights the diversity within committees, the need for representation of multiple methodological and disciplinary perspectives, and the importance of backstage translation work within ethics committees themselves. Secondly, reflections amongst the research team themselves highlighted that, while they had identified various possible methods in the original application, the rationale and underlying methodological principles informing this approach had not been captured, in part due to the restrictive fields within the application form. Given the opportunity to speak with the HREC (beyond the prescriptive forms), the research team was able to demonstrate a solid theoretical and methodological grounding for the proposed research activities. Thirdly, while the team could not define a fixed protocol for each research participant a priori, discussion and non-standard documentation made it possible for them to articulate the process through which the flexible protocol would be co-designed. Again, this proved critical in enabling the HREC to confidently grant an informed prospective approval.

Research Participation as Individually Bounded Versus Relationally Situated

A final tension that we identified in our practice reflection relates to the nature of participation itself, and whether this should be understood as individually bounded or relationally situated. This tension extends the prior points about methodological difference; more fundamentally, it speaks to important epistemological questions about where the ownership and control of research sits, and when research both “begins” and “ends.”

A key area of challenge related to the presence and role of various third parties in MW’s research. The HREC sought to understand what protections were in place for members of the community advisory group, given that some members of the advisory group themselves met HREC-defined “vulnerability” criteria and the group was discussing the “vulnerable” topic of sexuality. Yet for advisors to be authentically engaged in the early stages of research development, including protocol design and the ethics application itself, they were necessarily involved before ethics approval. In addition, the advisors were remunerated in their roles as co-researchers and received training about research. These aspects created different vulnerability considerations than for research participants.

The role of the advisory group in MW’s research thus challenged more orthodox models that clearly delineate participants from researchers and that treat research participation as a temporally bounded and delimited activity (Dodds, 2000). However, as Dodds also noted two decades ago (and as we continue to see today), the National Statement is itself conflicted on these issues, with a tension evident from the Statement’s initial conception between that narrowly-framed account of participation, and the ‘broad’ understandings of “research, human involvement and participation” which have necessarily accompanied the expansion of research ethics processes to encompass other, non-medical forms of research, and which include communities, and those impacted on, but not necessarily directly taking part in, research (2000, p. 15). Indeed, we note that the current National Statement includes explicit reference to participatory action research, even when the forms and processes of procedural ethics frame questions (e.g., requests to exactly quantify the number of participants) do not readily accommodate the blurred roles and extended timeframes that this frequently entails (National Health and Medical Research Council et al., 2023).

Further sticking points emerged in response to the involvement of communication supporters around the AAC user. Many AAC users require a communication supporter to facilitate their participation in research (Dee-Price, 2023; Lutz et al., 2016). Knowing the participant well, these supporters act in a range of roles including facilitating the researcher’s understanding of how the AAC user communicates, helping the AAC user indicate when they have something to say, supporting the AAC user’s comprehension of the researcher’s questions, interpreting what the AAC user has said to the researcher, clarifying the AAC user’s unclear speech for the researcher, or providing access to communication books and technologies. Support people may be parents or guardians, partners, paid workers, or in informal relationships such as friendships with the AAC user. Lutz et al. (2016) document how support people can both empower AAC users’ participation in research and, at times, present barriers to AAC users’ participation through paternalistic and ableist actions. For some AAC users, participation in research is only possible with the involvement of communication supporters, challenging the narrow notion of an individual participant.

As an expert in adolescent sexual and reproductive health, SS strongly advocated for the preservation of adolescents’ privacy; a need reinforced by advisory group and HREC members alike. Thus, mechanisms were required to enable adolescent AAC users’ engagement in the research without their parents or guardians. Yet AAC experts on the research team (MW, JW and KA) also recognised that parents and guardians are often an AAC user’s most skilled communication supporter and that, for many adolescent participants, they would not be able to participate without at least some support from their parent or another adult communication supporter. This consideration was also echoed by the advisory group.

If we conceptualise participation as individually bounded, then our aim with communication supporters would be to minimise their impact on the research and maximise the autonomous contributions of the adolescent. However, the advisory group and AAC researchers on the team understood that meaning is often co-constructed with all parties, in interactions involving a person who uses AAC, their communication supporter, and communication partners such as the researcher. Watharow, a researcher with Deafblindness, described a similar dynamic in the way she and other people with Deafblindness work with interpreters to express themselves (Watharow & Wayland, 2022). Van Goidsenhoven and De Schauwer describe this co-construction in the context of consent and assent in research with children with complex communication needs (2022), demonstrating that this relationally-bound co-construction is a consideration throughout the research process when working with people who use AAC.

If we acknowledge that communication supporters will inevitably influence the AAC user’s contributions, do they also become participants in the research? This is one of many questions which arose in our case that does not have a clear answer. Informed by the multidisciplinary team, HREC, and the advisory group, the research team developed a protocol which did not identify the communication supporter as a participant, but did address their involvement. This protocol included:

• the development of a clear guideline around if and when the researcher would breach the young person’s privacy (only if the researcher was concerned for the young person’s safety);

• efforts to support the adolescent to choose their communication supporter as much as possible;

• the development of a document to outline the expectations of the communication supporter within the research; and

• building in conversations early and often with the adolescent AAC user, their communication supporter, and the researcher about supporting authentic AAC user participation in the research.

As this team of authors reflected on third party involvement in the ethics review process, we realised that knowledge from community members, researchers, and the ethics committee are all required elements of safe and inclusive research.

Trust and Research Ethics

Reflecting back on the ethics review process, we identified trust as a recurring theme throughout our conversations with each other that was also woven throughout the three tensions (illustrated in Figure 1). Our conceptualisation of trust is not limited to ethics committees needing to trust researchers, or vice versa, rather it encompasses the complexity and competing imperatives that shape and underpin researcher-committee-community interactions.

As Hedgecoe observes, research ethics committees are inherently trusting in that they offer prospective approval (2012). Such approval requires trust that researchers will in fact do what they say they will do. Ethics approval in this sense is a kind of “anticipatory audit” (Strathern, 2000)—an “honour system” (Bosk & Frader, 1998) with typically little follow-up after approval has been given (Hedgecoe, 2012). Looking back at tensions such as the HREC’s unease about the flexible and open research protocol, we appreciated that the HREC was ultimately evaluating if they could trust the research team. From the research team’s perspective—and particularly that of MW’s experienced supervisors—a source of frustration was the perceived lack of trust by the HREC in the expertise the team brought to the research and their supervision of MW. At the same time, we also reflected on the broader institutional conditions within which ethics committees work, including growing workload (of committees themselves but also researchers, including HDR supervisors). This, when combined with “governance creep” (Gorman, 2011) and increasingly managerial and bureaucratic university cultures, arguably diminish the conditions within which trusting relationships can form. Another factor, often not recognised within researchers’ critiques of ethics review processes, is that ethics committees do, not uncommonly, receive applications for research that may be rushed, inadequately thought through, and that raise legitimate - and serious - ethical concerns. Consequently, while researchers may, with good reason, feel frustrated with what they experience as ethics committee gate-keeping, this function serves a necessary role.

In his reflections of trust in ethics review processes, Hedgecoe observes a fundamental asymmetry (2012). While committees make decisions about their trust in researchers when granting approval, there is no need for researchers to trust committees (and indeed research suggests that many do not). Hedgecoe also identifies a second asymmetry, namely that while committees are required to trust researchers, they do not themselves bear the vulnerability and risk associated with that trust (2012). In fact, research institutions do face the risk of significant reputational harm (and fear of such harm is arguably a driver of increasingly risk-focused ethics review processes); nevertheless, we concur with Hedgecoe’s broad point here, and add also that it is not only participants, but also their communities, who disproportionately carry the risks of unethical or harmful research. This observation again brings us back to the broader context beyond the bifurcated relationship between researcher and ethics committees. Here, the importance of trust also extends to the trust that participants and their communities have in the researchers with whom they engage, and more broadly to the trust that communities and societies can have in research, and in the academy.

What, then, might be the conditions for building broader cultures of trust as an underpinning for ethical research? In our case, a key factor in the ultimately positive resolution to a difficult ethics review process was the trusting relationship between the research team and VS, the HREC Chair. Affinities in our methodological orientations supported this, as did the opportunities for face-to-face dialogue that allowed us to build shared understandings beyond the limiting and fragmenting ethics forms, and that in turn enabled the “backstage” translation work that allowed the HREC as a whole to come to a consensus position of trust and confidence. We were thus able to avoid the contested and acrimonious interactions which many committee members and researchers have experienced (even if moments of mutual frustration persisted!). Trust enabled us to lean into the tensions together, acknowledging that research, particularly with this marginalised population, is not always ethically clean-cut, and also recognising that all parties were committed to a safe and inclusive research protocol. Enabling such trusting interactions requires attention at the level of the membership of individual ethics committees, as well as the resourcing of time that is required for such face-to-face interactions to take place.

A second key factor was the role of the community advisory group, which was critical in enabling trusting relationships between the research team, participants, third parties, and the broader cerebral palsy and AAC user communities. As noted above, however, the community advisory group members were initially regarded by the HREC as a vulnerable group, rather than a group which brought knowledge about developing safe and inclusive research. Malone et al. (2006) and Johnson et al. (2019) have argued compellingly that protectionist and exclusionary approaches to community member researchers can further engender mistrust between community members and ethics committees. Proponents of participatory action research and community based research approaches, including members of the research team, argue that power can only be shifted back to communities if researchers stop positioning community members (such as advisory group members) as “vulnerable subjects of research,” and start seeing them as colleagues.

Below, we propose some key strategies for collaboratively developing safe and inclusive research.

Strategies for Building Trusting and Ethical Research Cultures

Collaboration and the Distribution of Power

Ethics committees hold a position of power over researchers and communities – they are in control of whether the research can proceed (Cross et al., 2014). In writing about the ethical review of community based research, Cross et al. call for “recognition that IRBs [Institutional Review Boards] ought not simply to ‘tell’ researchers or communities what is ethical/appropriate; they are partners in a collaborative process aimed at responsible conduct of research” (2014, p. 1021). In our case, the former committee chair’s invitation to meet with the research team, and her approach to that meeting, demonstrated that she saw the research team as partners in that collaborative process. In echoing Cross et al.’s (2014) call for collaboration, we advocate for changes at the institutional, committee, and researcher level.

In service of this aim, all parties should approach the ethics review process as a collaboration, which will require:

• acknowledgment of trust as a factor in the ethics review process;

• development of processes to acknowledge communities as partners; and

• engagement in feedback loops around both the process and the outcomes.

Institutions can also counter the professionalisation and bureaucratisation of the process, which will require attention to:

• re-weighting spaces for academic leadership of ethics review processes and communication with university communities, with professional support; and

• providing committees with the time and resources to engage in collaborative discussions and feedback loops.

Skills and Development

During our reflection, we realised that some mistrust was based on a lack of understanding or skills. For example, the HREC’s concerns about under-supported and under-skilled PhD students informed their mistrust of our research. The highly specific, disaggregated nature of the ethics application forms and MW’s developing academic writing skills compounded this. Meanwhile, common misconceptions around disability and sexuality that were reflected in some of the HREC’s concerns risked fulfilling the stereotype that ethics committees just “don’t get it.”

In addressing these tensions, institutions should:

• consider the potential negative effects of overly bureaucratised forms and processes, reweighting these to support researchers to tell more cohesive narratives about their research and its alignment with ethical principles, rather than a proliferation of questions privileging detailed mastery of technicalities; and

• resource fulsome research ethics training for research staff and students that is attentive to diverse disciplinary and methodological approaches, and that ensures up-to-date competency with changing ethics requirements;

Meanwhile, researchers should:

• tell the full narrative of their research, so that ethics committees can understand the entire participant experience and context;

• clearly and explicitly provide information about the research population and address common misconceptions (diagrams such as the one in Figure 2 or vignettes may help researchers illustrate this information);

• proactively and clearly justify their research by explicating their discipline-specific understanding of vulnerability;

• provide theoretical foundations for using creative methodologies;

• cite best practices and existing guidelines for research with their participant population, including explaining appropriate and evidenced approaches to consent for these cohorts;

• consider seeking independent, technical and/or lived-experience review prior to submission of ethics application to provide support for the protocol;

• pre-emptively and explicitly identify potential ethical “sticking points” in their ethics applications, and pro-actively demonstrate that they have carefully considered responses to these; and

• join ethics committees to represent creative and iterative qualitative methodologies.

And finally, committees should:

• ensure committee membership reflects diversity and experience working with a wide range of populations (including child and youth cohorts and people with disability), research methods (including creative and iterative approaches) and research topics. This may be more realistic or productive than expecting that all committee memberships can be fully trained in the ethical considerations relevant to all potentially vulnerable participants or contexts.

• recognise the value of both face-to-face interaction and feedback loops, in trust-building and collaborative knowledge-sharing. This should include, and seek to foster, mutual acknowledgement of the expertise (as well as limits) of both reviewers and researchers.

• develop processes that recognise contemporary supervisory structures and research team expertise. Not all student projects carry the same inherent risk. For supervised student projects, risk and rigor should be evaluated based on the team’s collective expertise and their teamwork approach. Supervision teams may be multidisciplinary and involve supervisors from clinical or industry settings, bringing additional value to the project. Articulating this may require the addition of questions probing the team’s plan for the supervision and support of student team members, including mechanisms for overseeing the quality and safety of student work.

Conclusion

Everyone involved in MW’s research, from the research team and advisory group to the members of the HREC, had the same goal: for the research to be safe and inclusive. Everyone agreed that the adolescent AAC users had a right to participate in research about them. Nonetheless, tensions arose around what safe and inclusive research meant with this group, summarised as tensions around categorical versus contextual approaches to vulnerability; a priori versus dynamic methodological rigour; and participation as individually bounded versus relationally situated. As we collectively reflected, one thing became immediately apparent: that these ethical tensions could not be understood within the at-times depicted “us versus them” characterisation of the committee-researcher relationship. We soon recognised that we needed to situate ethics committees in broader contexts in order to begin to unpack the process. As we delved into these tensions together, the concept of trust also emerged as a feature that is multi-valent and central to the ethics process, and that could be better acknowledged by research teams, communities, institutions, and ethics committees alike as underpinning the ability to produce safe and inclusive research together.

There is no right or wrong side of our three tensions. Leaning into them together as a multidisciplinary team not only produced a safer and more inclusive protocol but was a powerful learning opportunity for all involved. This process helped us recognise that many ethical tensions in qualitative research are similarly not clear cut, and must be navigated by a team which represents a range of experience and expertise (including lived experience). Institutions, committees and researchers must commit to substantial changes in order to navigate these tensions effectively. While our case example involved adolescents with disability, we think that the tensions, our response to those tensions, and the recommendations posited here may be applicable to researchers working with other marginalised communities, particularly researchers involved in participatory action research.