Abstract
This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New Zealand Ethics Committee (NZEC), formed in 2012, responds to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research.
Introduction
This article examines the claim that the New Zealand Ethics Committee (NZEC) is unique in the world: the only ethics committee that reviews applications focusing solely on an application’s research ethics and not, as traditionally practised, on research governance (Iphofen, 2009). Whilst university and health-based researchers are compelled to submit their research for review by ethics committees, community-based researchers in New Zealand are exempt from this process; they usually do not have access to this level of support or review. This paper presents a qualitative study with community-based researchers who previously submitted an ethics application to the NZEC during its first year of operation to ascertain why they sought ethical review when not mandated to do so and if they experienced this review process as a new paradigm. Though many social scientists have found research governance a frustration in ethics reviews (Bosk and De Vries, 2004; Gunsalus et al., 2006, 2007), this article explores if an ethics review committee can function outside an institutional frame focusing solely on research ethics and does the NZEC represent a novel paradigm in moving ethics review beyond a risk-management exercise of gatekeeping to that of bridge-building between parties.
Ethics governance in community research
Israel et al. (1998) formally recognized the tensions and possibilities of community-based participatory research (CBPR) with an initial focus in public health. Flicker, Travers and Guta (2007) note that CBPR represents a relatively new research paradigm that has expanded in multiple fields of inquiry and focuses on research partnership between communities and academics. Yet community research is inherently problematic within traditional ethics governance structures and has two strikes against it. The founder of the NZEC experienced the first problem when he chaired a national health ethics committee. Community researchers conducting social science research without a health focus would approach him asking if his committee would review the application. As non-health research was not within the Multi-region Health and Disability Ethics Committee’s remit, he was forced to decline their request. Nonetheless, it was during his tenure as chair of the committee that he saw a huge demand for such a committee positioned outside institutions, i.e. university or bio-medical research. Similar exclusions exist in the UK, Australia and the USA where there are no national or regional ethics bodies to review ethics applications. Yet gaining access to ethics committees is not the community researchers’ only challenge.
When community researchers do gain access to an institutional ethics committee, often co-opting an institutional person onto the research project, there can be several tensions as CBPR has a long and contested history with ethics review boards. Hotze (2011: 105) found mixed results: In theory, CBPR offers benefits to academic researchers, the community involved in the research, and individuals in the community. … In practice, however, CBPR often differs from this ideal: the demands of academic research, such as including a control group in many study designs, may not be liked or tolerated by some communities, and researchers may not be able (or willing) to accommodate all the needs of the communities they wish to study. Misunderstandings about the goals, benefits, or process of research can strain – or even sever – the relationship between communities and researchers.
Theoretically there is a significant difference between the NZEC and traditional ethics committees: it deliberately seeks to be a non-institutional ethics review board and eschew research governance even to the point of choosing to remain non-accredited. This, too, is a novel feature as most ethics committees worldwide are affiliated with an institution, which leads Iphofen (2009) to pejoratively characterize ethics review boards as more focused on research governance – that is, protecting the institution from legislation – than from research ethics.
Social scientists acutely experience this governance focus coupled with a tendency to review social science within a positivist or bio-medical prisms as exasperation. Van den Hoonaard (2001) likens an institutional review board (IRB) review to a moral panic while Haggerty (2004) casts the bureaucratization of IRB review as ‘ethics creep’ and Pritchard (2002) contrasts the researcher as ‘traveller’ with the IRBs as ‘trolls’. Further, Stark (2012) identifies the primary focus of ethics committees as an avoidance of litigation via its focus on research governance. An additional problem CBPR researchers experience often manifests as a ‘chicken-and-egg’ scenario: what comes first? Are community groups’ research questions developed initially in consultation with the community or are institutionally-based researchers required to first gain approval from their ethics committee prior to interfacing with community groups (Seiber and Tolich, 2012)? Many ethics committees require the researcher to gain ethics committee approval prior to approaching the community, usurping the notion of full or unfettered community involvement in the development of the research question. The rationale for this two-step process has little to do with research ethics but more to do with research governance and how ethics committees’ primary allegiance is to the protection of the institution, not the community.
The space in which non-institutional, community-based research often occurs exists within a vacuum where ethical advice or oversight is difficult or compromised by the two-step process unless partnerships are made with eligible institutions. Flicker et al. (2007: 490) summarize these tensions, noting that IRB guidelines and forms focus principally on assessing risk and perpetuate the ‘knowledge production’ of academic researchers at the expense of silencing, marginalizing and even excluding possibilities of CBPR, and they therefore suggest a need for a new framework.
Numerous studies acknowledge that sourcing ethical review for CBPR is difficult, with Guta et al. (2010: 35) noting: ‘Access barriers to effective ethics review continue to be a significant challenge for researchers and community-based organizations undertaking community-based participatory research.’ However, more frequent is the discussion of how and why IRB ethics review is often ill-suited to accurately assess community research. It is also likely that those who have foregone ethics review and have conducted community research are less likely to have a published voice than the community research that partners itself with academia and moves through an IRB process. Some authors go as far as to say this lack of qualification can cause harm instead of minimize harm to participants. The core of these tensions appears to be gatekeeping methods of research and understanding the complexities of community research ethics in the field (Couzos et al., 2005; Eikeland, 2006; Flicker et al., 2007; Guta et al., 2010).
This CPBR ethics vacuum has become increasingly dangerous, particularly for non-government organizations that are based in a wider neo-liberal environment which is characterized by relatively short-term contracts where they are increasingly being asked to prove their ‘value for money’ in terms of outcomes, productivity and effectiveness. Thus community-based organizations are under pressure to deliver evidence that can help inform their own practice and policies but also as a justification for why they should continue to receive funding. As formal ethical review is often not accessible, this situation leaves community-based agencies (and at times, government groups) foregoing any ethical advice and developing research designs that are not subject to a rigorous review, leaving the organization and participants at a potentially greater risk of harm.
Israel and Hay (2006: 1) astutely claim social science and ethics committees are at an impasse, stating: ‘Social scientists are angry and frustrated. They believe their work is being constrained and distorted by regulators of ethical practice who do not necessarily understand social science research.’ Even though this frustration and anger has persisted, these authors note that nothing has yet broken the impasse. Institutions retain a monopoly on ethics review, thus making ethics review mandatory. In its own way the NZEC seeks to address this impasse by demonstrating that social science applicants can be reviewed differently. These challenges thereby set the scene to advocate for the revitalization of community-based research and NZEC has attempted to respond to this challenge. This paper now presents the NZEC philosophy and approach in light of the factors that led to its commencement.
The New Zealand Ethics Committee
Within New Zealand, access to ethical review is not universal, even though the Cartwright Inquiry (Coney and Bunkle, 1988) mandated this process for any research with human participants. Existing human ethics committees are based almost exclusively within tertiary institutions or health-and-disability-based committees (HDECs). Organizations that do not have a link to a tertiary institution or to an HDEC are often denied opportunities for ethical review, oversight or advice. These groups include researchers from central and local government, for-profit research companies, NGOs, market researchers, and community groups. The NZEC was created to serve and build capacity with this important and excluded constituency that is often at the coalface of service delivery and policy development.
The NZEC, formed in 2012, reviews applications, gratis, from all researchers exempt from formal ethical review. NZEC is not institutionally based and its focus is solely on research ethics where the focus is upon the protection of the research participant, not the host institution. NZEC is a non-profit organization committed to using their collective past ethics committee experience to build an ethics infrastructure within New Zealand that exists alongside the health and university ethics institutions’ sector and yet is uniquely different in philosophy. Of particular note is that submission of an ethics application to NZEC is voluntary, not mandatory. Researchers are free to accept or ignore the committee’s advice.
Members of the NZEC have backgrounds in research ethics, research, indigenous research and research methodologies. The current 14 members represent academics, four former chairs of institutional ethics committees and four non-academic members with strong ties to the community and community research. Upon receiving an application the convenor ensures that all the documents have been provided and the indemnity waiver has been acknowledged. The letter to the applicant reminds them that NZEC is not legally liable for any adverse effects stemming from the research.
In what follows, 10 applicants who sought approval from NZEC in 2013 agreed to participate in a study relating why they sought ethical review when not mandated to do so and if they experienced this review process as different from the traditional institutional ethics review process.
Study design
The 10 participants in this study were identified as applicants to the NZEC in the 2013 calendar year, its first full year of operation, and were recruited by way of a research assistant employed to send them all an email asking them to participate. Of the 14 applications received in 2013, four of these applicants withdrew their application for a variety of reasons and did not receive final NZEC ethics approval.
The two authors of this paper are current members of the NZEC, so it was an imperative that these power dynamics were addressed in the study design. To achieve this, the research assistant liaised with all participants and conducted all but one of the interviews (due to sensitivity issues in one organization). All participants were told that their participation or not would not affect their standing with NZEC and they had also finished conducting their associated research projects. The research assistant asked four open-ended questions: Please describe your research; explain why you or your organization sought ethics review when not required to do so; evaluate both the strengths and weaknesses of the NZEC application process; and, lastly, how was it different from other ethics review process you might have experienced?
The interviews were audio-recorded, professionally transcribed and were analysed by a process of initial coding to identify key themes along the lines of the four questions asked in the interview; these then became focused codes (see Saldaña, 2009). We then wrote memos about the major themes, provided below, which were discussed as a research team to ensure better consensus around the ensuing abstraction of the data. The project received ethics approval from the University of Otago ethics committee.
Results
The participants’ comments illustrate four key themes that relate to these community-based organizations’ experience of working with the NZEC: the need for legitimacy; collaboratively addressing the methodological/ethical nexus; addressing academic imperialism; and finally, weaknesses and areas that need strengthening in relation to working with the NZEC.
The need for legitimacy and rigour
One of the most striking aspects of the participants’ comments was that they felt going through a review process gave their work a sense of legitimacy and even offered a ‘validation’ that their ethical claims could be heard, particularly by funders. They noted that in the new neo-liberal research environment there is now more pressure to communicate the value of their associated funder’s investment with their organization. As one participant stated: We wanted to do this right. We needed to know that our project was sound and we needed to know that it was ethically valid I suppose. We will be mining things for years to come. There is an enormous amount of information in there and I think for me it was just about making absolutely sure that our process was right, you know, none of us are researchers and I guess it was to make sure we had followed the process along the way. I would hate for there to be any questions in the future surrounding the validity of what we had done so I guess it was another step towards making sure that was addressed.
However, it was also clear that these organizations wanted to account for their work in other ways. Most participants noted that the process of review gave further rigour to their research design which in turn also gave them greater legitimacy. As one participant stated: I think because you know you’re gonna go through an independent review committee you do try and make sure you’ve got set up everything properly rather than trying to wing it, so it does put […] more rigour into how you’re setting everything up.
Another participant noted that part of this was ‘respecting their clients’ where getting ethical advice was of benefit to the voices or experiences to the relevant community of interest that they were researching. In this sense, their comments were not only about accountability but also a commitment to a value-added best practice to inform their organizational service delivery or policy development.
Lack of fit with traditional ethics committees and responding to academic imperialism
Participants spoke clearly about how they were excluded from ethical review processes in general. Even though on paper they were conducting health and disability research that, arguably, should have been eligible for HDEC review. Ironically, since 2012, the HDECs have become more restrictive, focusing solely on clinical trial research so one applicant’s questionnaire-based proposal to work with a particular physical disability was deemed ineligible, highlighting the further marginalization of CBPR.
In circumstances where one researcher decided to partner with university institutions, they noted a loss of control when they had to pass ‘lead investigator’ status on to the university: ‘The universities would not play ball with us’.
This form of academic imperialism (though not their terms) was clear where risk aversion, control of the research agenda (through its design, implementation and associated kudos from the associated outcomes) and the disenfranchising of the community voice often occurred. Another government contractor told a story about the price of fitting in with traditional ethical committees and saw existing review pathways as disempowering to community-based research.
[A New Zealand based university] were basically using their access to an ethics review board as a way of gaining control over [our] research. The first phase of my research, I had to hand over all control to a professor at the university. And that’s not really conducive to working hard and getting someone else to take all the glory but I guess more importantly, it means we haven’t had control over our research and it has come at a huge financial cost, we had to pay a service for their involvement and we flew one of them down to be present in the room for my briefing and all sorts of things … Because I wasn’t a member of the university, they didn’t have any formal control over what I did. So therefore in order for them to grant us access to their independent ethics review board, they would have to be signed on as principal investigators. So to me, I didn’t see that being sustainable.
These dynamics are not only about ‘voice’, it is also arguable that it can be a disservice to applied researchers as those who are often at the coalface have less influence on the research agenda if they want to be eligible for the ethical review process. Researchers who had previous experience of HDEC and tertiary ethical review noted that NZEC simplified ethics: When I compare it to the Ministry of Health ethics process, what NZEC are offering is a lot less onerous I have to say. You know the requirements for going through the other process was huge. I think there were about 88 pages or something that we were going to have to flip through.
This simplification, however, was not without rigour and it required a sustained engagement. One of the most notable ways that this happened was through the ongoing dialogue that NZEC committee members had with applicants. This leads to the next key theme: that of collaboration and ethics as bridge-building as opposed to gatekeeping.
A spirit of collaboration and negotiating the ethical/methodological nexus
All participants with the exception of one noted that engaging with the ethics committee enhanced their project. In the main, the applicants, some of them with limited research experience, noted their appreciation for assistance with the framing of their associated study designs. Several acknowledged that community-based organizations can be intimidated by research which discourages them from pursuing it even when a relevant and significant question or need for evaluation emerged. In relation to that, one applicant said the NZEC review process gave them good ideas in terms of developing their survey to ensure that it addressed the questions related to the research question and minimized the time commitment for participants.
The review itself gave us a few good ideas in terms of tweaking the survey to become more balanced … So it definitely enhanced the design of the study.
Another participant noted that it ‘encouraged deeper reflection and engagement with our work’. For instance, a participant who developed a specific survey for parents of children with a disability used the service in a number of ways. They were praiseworthy of the initial review but they said: The further we got into [the project], we realized the survey actually wasn’t meeting the need out there and so we revised the survey and so that meant going back to the ethics committee and informing them … That’s actually where we got most of our help around the questions and how they were framed up. The convener gave quite a bit of really good advice around that and made quite a few changes as a result of that so yeah, so things did change once we were out there but that was purely because of the tool we were using not working for us really.
There is an established tension in the academic literature where ethics committees have confused research ethics and research design providing requirements that extend beyond ethical concerns (Bosk and De Vries 2004; Gunsalus et al., 2006, 2007). However, participants in this study overwhelmingly noted that they appreciated this level of input, thereby combining an ethics/methodological nexus which is often scorned by academic applicants in traditional committees. As another participant noted, there was a sense the committee had a ‘dual imperative to challenge us and to support us’.
Yesterday I went and visited [a government department’s] psychologist and I described the New Zealand Ethics Committee to them as a very useful resource, very helpful, very pragmatic, I guess with integrity, very approachable, very helpful, and I emphasized what I see as a mentoring role in the NZEC.
The reasons applicants choose to seek review were from a genuine sense of enhancing their research. One applicant surprised us. What they said did not fit in any paradigm that featured Haggerty’s (2004) ethics creep or van den Hoonaard’s (2001) ethics review as a moral panic. To this applicant NZEC was an ethics committee that served both the needs of the research participants and the researchers. What is remarkable in the following quote is how the researcher sought and used ethics review to safeguard their participants. Clearly this was not research governance: I feel like we honoured and valued our research participants more and we were able to demonstrate that because we had gone through that extra process that we didn’t have to go through. We did it because we wanted to make sure we weren’t unconsciously or accidentally being exploitative or inappropriate in any way so I kind of felt that going through this ethics process with an independent ethics body that wasn’t linked to how good it would make the university look if we did this research, really – it really helped us feel stronger about what we were doing and yeah, we felt that it was a way of valuing our participants.
Thus participants did note the grey area of methodology/ethical issues within traditional ethics committees and suggested it was a different, more self-empowered, way of considering ethical review with CBPR. Overall, participants were positive across the interviews, suggesting a conclusion that this new research ethics process might represent a novel paradigm to CBPR-based ethical review.
Areas needing further development
Though participants on the whole were positive about their experiences with NZEC, there were some issues that they also identified. One which several participants noted was that NZEC, as a new entity, is not necessarily recognized by other ethics review communities, and questioned what ethics approval from NZEC actually means. Again, this related to legitimacy and the issue of NZEC having limited influence and presence alongside traditional ethics committees. They noted a need for a greater public profile as NZEC’s reputation was linked to the applicant’s perceived legitimacy of its endorsement.
A number of applicants noted coming back to NZEC during the course of the study to make amendments to the study design or to seek ethical advice on issues that arose in the conducting of research. Whilst these interactions were welcomed, it does raise questions of NZEC’s capacity where its members serve on the committee as professional or academic representatives in a voluntary capacity. Though NZEC was able to respond to this additional need for advice and/or clarification, it does raise larger questions of NZEC’s capacity if the current 25 applications per year increase to 60–80 and the applicants needed further support/advice around research design and ethical oversight.
One applicant was not positive about the manner in which NZEC reviewed their application. There are privacy issues here but the researcher believed NZEC overstepped its brief not by commenting on the research methodology but the ethics of the research project itself. The project was an evaluation of a program and the researcher hired to conduct the research sought protections for themselves and the participants. Members of NZEC believed the research design was sound but the topic was ethically unsound, highlighting potential tensions between applying to a non-mandated ethics committee and the relationship between organizational practices and research.
Implications of bridge-building and the revitalization of community-based research
There is an evident thirst for ethical oversight in community-based participatory research as the number of applications submitted to the NZEC has doubled in two years with little marketing. The value of research designs and questions that emerge from professional communities of practice and service-delivery organizations highlight that these groups need greater voice. This presence is not about silencing the contributions of other institutions and researchers who are already eligible for ethical review but is rather acknowledging that the scope for access to ethics review is unnecessarily narrow. However, shifting from research governance to research ethics in community-based research presents both opportunities and challenges. Given that researchers in community-based participatory research are less likely to have research training (though not always), the ways in which a committee engages with them likely needs to be different from other avenues. The linkages and tensions between methodology and ethics exposed in the literature may be exacerbated by CBPR. In this sense, the metaphor of bridge-building that makes ethics more of a collaborative and capacity-building venture in order to facilitate research (though again, not always) rather than having a gatekeeping function.
NZEC has endorsed the New Brunswick Declaration (see Van de Hoonaard, 2013) and one item encourages those who oversee IRBs and other ethics committees to support a regulatory culture that grants researchers the same level of respect that researchers should offer research participants. This respect, however, is all too often lacking in CBPR under traditional ethics structures. The reality of academic imperialism in CBPR narrows what is possible in social science research and risks marginalizing and disempowering the voices and insights of those often working much more closely at the coalface of applied social practice. The notions of bridge-building and collaboration in CBPR afford greater opportunities for such respect. Whilst this metaphor suggests an ability to traverse particular obstacles or impasses, it is also necessary to recognize that not all collaborative ventures are successful, or even realized. Central to a CBPR model of research ethics is that proposals that do not adequately address the potential ethical implications of its design are not approved. Thus, whilst collaboration and capacity building are central to NZEC’s focus, there are applications which have not been approved due to their not addressing particular ethical issues. In this sense, this form of ethical review is not to be conflated with complicity or lack of rigour and ethics oversight.
Overall, the applicants in this study generally noted that they appreciated a form of review when it created a culture of dialogue between committee and applicants, rather than continuing the traditional gatekeeping governance role more aligned to protecting an institution from litigation. The implications of capacity building within these groups is clear and provides a wider articulation of voices which are generally marginalized within scholarly debates, leading to the exclusion of what constitutes ‘authoritative knowledge’ that is recognized in respected scholarly journals and reports that can influence and shape current policy, practice and theory.
Sustainability
Within this paper, we have loosely defined ‘community’ as anyone wanting to conduct community-based research that is not eligible for ethical review. However, there can be differences when working with the wide range of potential applicants – non-government organizations, private consultants and government-based entities – where the range of research questions can also be limitless. Thus, having a clear mission statement and focus in a committee’s work (which in a way does locate its ideology, epistemological assumptions and underlying philosophy) helps to put parameters around what it is doing and why. Such a clear statement is of benefit to the communities of interest and helps ensure sustainability. These interactions highlight that no ethical review committee is neutral – the membership of any given group has inherent values, and rightfully so. The need to make sure these values are explicit is central to ensuring that both applicants and reviewers understand the contexts and the lens in which a research proposal is evaluated.
The legal implications of running a CBPR-focused ethics committee where the focus shifts from ethics governance to research ethics highlights that such a model is not one without risk. One of the clearest tensions in having an ethics committee that does not have an institution sitting behind it is around issues of liability. Thus, mitigating risk/liability is a key aspect of making an organization sustainable for research ethics where its members are not exposed to any undue risks from the ‘unknown’ of the actual conducting of research. Within the New Zealand context, the NZEC indemnity statement researchers sign states: The researcher agrees to indemnify the NZ Ethics Committee against any action against the Committee by a third party as the result of the research. The researcher would be well advised to investigate and secure appropriate indemnity insurance as this will not be carried by the NZ Ethics Committee. I agree to indemnify the New Zealand Ethics Committee against any action against the Committee by a third party as the result of the research.
It is clear that any ethics committee wanting to follow this model would also need to get country-appropriate legal advice to ensure that the committee and its members were not liable if the research was to not go ahead or if unanticipated complications arose within an endorsed research proposal.
Though participants noted the value in ongoing dialogue and the ease of access with NZEC, there are also larger capacity questions at play. How can the NZEC or a similar ethics committee retain the bridge-building and relational focus when the floodgates of applications open? Is this the virtue of smallness rather than a justification of a new approach for research ethics? Finally, membership within the NZEC is predominantly composed of academics within tertiary universities – having this university endorsement in terms of its staff time to commit to a community-based endeavour means that it is about appreciating that ethically informed and approved research does not need to sit solely within the academic and bio-medical health domains. However, the institutional backing that sits behind traditional ethics committee is significant and highlights that a CPBR model addressing research ethics which the NZEC endorses highlights a need for leadership and vision to make such a committee effectively function. It also requires university recognition of the value of having its associated staff participate in a committee that is not as explicitly tied to building the capacities of the academy. We argue that academics should embrace such service roles, as participating and endorsing true CBPR provides greater understandings of our social worlds, opens new research opportunities and identifies fruitful partnerships where community and academic-based researchers can more effectively work together in meaningful ways.
Conclusion
The need for, and value of, CBPR research is well established, yet its ability to gain recognition from ethics committees is not. The distinction between research ethics and research governance made in this paper provides a lens to see how many (if not most) traditionally-based ethics committees have limited scope to support and work alongside community-based organizations. Whilst the role of traditionally-based committees is referenced in this paper, it is not done with the intent of questioning their associated merit. It is more about broadening the scope as to what is possible for ethical review and how this can be done in different ways that capture the needs and interests of organizations that sit outside the academic and health-based remits. Overall, the participant comments in this study emphasized the NZEC as an organization more in tune with the research ethics issues raised by the researcher on behalf of their research participants than on institutional protections known as research governance. A renewed focus on research ethics fits well with a community development approach to empowering organizations and the communities that they work alongside and provides a way of finding greater legitimacy and voice within research domains. Whilst the NZEC model has additional considerations that warrant caution in terms of sustainability and liability, these challenges can be addressed and highlight the need to think of ethics beyond a gatekeeping governance paradigm.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.