Social Science & Medicine 255 (2020) 112980

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Social Science & Medicine

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Writing to template: Researchers’ negotiation of procedural research ethics T

a,∗ a b
Anna Chiumento , Atif Rahman , Lucy Frith
a
Department of Psychological Sciences, University of Liverpool, United Kingdom
b
Department of Health Services Research, University of Liverpool, United Kingdom

A R T I C LE I N FO A B S T R A C T

Keywords: This qualitative study examines researchers' views of research ethics in everyday global mental health research
Empirical ethics practice. We present data from a multi-site study conducted in 2014-15 involving 35 individual in-depth in-
Research ethics terviews that explore researchers' perceptions of procedural ethics in research conducted in South Asia. We
Qualitative examine how researchers' negotiate ethical procedures, and consider the impact this has on ethical practice. This
Ethical review
study foregrounds researchers' pivotal role in procedural research ethics: they produce ethical documents in-
Global health research
Boundary objects
cluding research protocols and informed consent forms; engage in ethical review; and apply ethical documents to
South Asia research practice. We apply the analytical framework of boundary objects to show the active work that ethical
documents simultaneously enable and inhibit as researchers and ethical review boards apply these as templates
for interaction. This analysis shows how the documents required by procedural ethics processes facilitate re-
presentations of research that are generalised, standardised, and abstracted from the situated context in which
they are applied. Researchers' engagement with these standardised forms cannot prepare them for potential
ethical issues in research practice. These templates therefore act as ideal constructions of what research ethics
could be, documenting moral intent that researchers draw upon to translate into practice.

1. Introduction 1.1. Theoretical framing

It is widely accepted that research should be conducted ethically
(see e.g. Council for International Organisations of Medical Sciences
(CIOMS), 2016; The National Commission for the Protection of Human
Subjects in Biomedical and Behavioural Research, 1979). Drawing upon
Guillemin and Gillam’s (2004) distinction between procedural ethics
and ethics-in-practice, this paper explores research ethics in everyday
global mental health research practice. Procedural ethics encompasses
research ethics approval processes such as developing research proto-
cols, participant information sheets, informed consent forms, and other
procedural documentation supporting research. These procedural
ethical processes are different from ethics-in-practice: the day-to-day
ethical issues that arise during research conduct. This distinction does
not imply that the normative framing of “ethics” shifts between pro-
cedures and practice, but rather, that the expression of ethics in pro-
cedural documentation does not (and could not) embody the range of
situated ethical judgements researchers may face in practice. This study
aims to contribute to understanding what leads to and sustains this
distance between the expression of ethical principles in procedural
ethics, and the enacting of ethics-in-practice (Guillemin and Gillam,
2004).
Prior to conducting research with human participants, researchers
must follow procedures intended to promote ethical research that we
refer to as procedural ethics. Procedural ethical guidelines in biomedical
and increasingly social sciences research can be broadly characterised
as adopting a principalist approach (Beauchamp and Childress, 1989).
Principalism is founded upon a ‘common morality’ claimed to be uni-
versally applicable across philosophical, theological, and social epis-
temologies and cultures (Beauchamp, 2003, 2007; Emanuel et al., 2004;
Lacey, 1998). It aims to offer: “a shared and serviceable group of gen-
eral norms for analysing many types of moral problems” (Beauchamp,
2007, p.3) that can be easily understood and applied across disciplines.
Therefore, principalism is packaged as a universal route to assessing
and responding to ethical issues in research (Hoeyer and Hogle, 2014).
Claims of principalisms' universal applicability has aided the de-
velopment of procedural research governance that seeks to offer ac-
countability and auditable proof that ethics has been “done” by pro-
ducing outputs such as the signed informed consent form (Boulton and
Parker, 2007; Jacob, 2007; Strathern, 2000). Governance includes
compliance with research ethics guidelines to receive funding (Boulton
and Parker, 2007), and Ethical Review Boards’ (ERBs) professional

∗
Corresponding author.The University of Liverpool, Block B, Waterhouse Buildings, 1-5 Brownlow Street, Liverpool, L69 3GL, United Kingdom.
E-mail address: Anna.Chiumento@liverpool.ac.uk (A. Chiumento).

https://doi.org/10.1016/j.socscimed.2020.112980
Received 12 August 2019; Received in revised form 3 April 2020; Accepted 6 April 2020
Available online 11 April 2020
0277-9536/ © 2020 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license
(http://creativecommons.org/licenses/BY/4.0/).
A. Chiumento, et al.
accreditation schemes in low and middle income countries (LMICs)
(Douglas-Jones, 2015). Increasingly globally embedded, the for-
malisation, rationalisation and harmonisation of research ethics gov-
ernance is driven by economic and structural factors (Dixon-Woods
et al., 2007; Hoeyer and Hogle, 2014).
Despite perceived advantages, principalism is subject to critique.
This includes the philosophical concern that it lacks a unifying moral
theory (Clouser and Gert, 1990). More importantly, it is argued that
principalism is a poor guide to action (Levi, 1996), recognising that
ethical judgements require balancing context with abstract principles to
inform morally justifiable actions in any particular instance (Fletcher,
1967; Hammersley, 2015). Whilst specified principalism attempts to
address this by tailoring broad principles to specific contexts
(Richardson, 2000), this challenges prinicipalism's general morality by
integrating it with specific moral frameworks such as cultural tradi-
tions, religious beliefs, or individual attitudes (Hammersley, 2015).
When applied to research governance, principalism is frequently
translated into prescriptions and proscriptions (Biehl and Petryna,
2013), potentially encouraging their rote application (Green, 1990)
which can limit what is identified and addressed as an ethical issue
(Kingori, 2013). The danger of rote application of prescriptions and
proscriptions is compounded by a proceduralist demand for standar-
disation (Strathern, 2000). This standardisation of ERB decision-making
is challenged by Friesen et al. (2019) who argue that ERBs should have
the discretion to respond to the inherent complexity of making nor-
mative decisions about research, highlighting that the contextual and
ethical factors at play are inherently varied and interact in un-
predictable ways. Importantly, the assumption that governance me-
chanisms can ensure ethical practice has been heavily critiqued (Miller
and Boulton, 2007). Here, tensions between procedural and in-practice
ethics come to the fore (Guillemin and Gillam, 2004; Hoeyer and Hogle,
2014). This study takes this tension as its point of departure, exploring
this through an analysis of researchers' experiences of procedural ethics
when conducting mental health research in multiple contexts in South
Asia. The framework of boundary objects is applied (Star and
Griesemer, 1989), illuminating how researchers’ interactions with
procedural ethical documents, and their perceptions of ERBs expecta-
tions, foreground procedural ethical markers such as the informed
consent process, whilst supressing attention to situated ethical research
practice.
1.2. Boundary objects
Our analysis draws on the analytic framework of boundary objects
to illuminate researchers’ interactions with procedural research ethics
(Star and Griesemer, 1989), building on previous empirical ethics re-
search where this framework has been applied to informed consent
(Hoeyer and Hogle, 2014).
Star and Griesemers’ (1989) boundary objects framework aids un-
derstanding of how material objects such as documents and forms fa-
cilitate coordination across social worlds, whilst simultaneously re-
taining interpretative flexibility that meets the needs of each
independently. Originating from an ethnographic study of a natural
history museum, the boundary objects framework demonstrated how
heterogeneous actors working towards the same goal cooperate despite
divergent or competing concerns of the social worlds they inhabit (Star
and Griesemer, 1989). .
As defined by Star and Griesemer (1989), boundary objects:
“inhabit several intersecting worlds…and satisfy the informational
requirements of each… They are both plastic enough to adapt to
local needs and the constraints of the several parties employing
them, yet robust enough to maintain a common identity across sites.
They are weakly structured in common use, and become strongly
structured in individual-site use” (p.393, italics original).
Boundary objects key features include that they are simultaneously
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Social Science & Medicine 255 (2020) 112980
concrete and abstract; specific and general; conventional and custo-
mised, operating as bridges or anchors across social worlds (Star, 2010;
Star and Griesemer, 1989). Importantly, boundary objects are complex
and inseparable from “social-negotiation processes within and between
communities, and therefore, empathetically purposeful constructs
[which]…do not …passively bridge but actively negotiate perceptual
and practical differences” of diverse social worlds (Huvila, 2011,
p.2530).
The standardised documents of procedural research ethics such as
research protocols, information sheets, and informed consent forms
embody boundary object features. They provide a shared referent be-
tween researchers, ERBs, funders, and research participants, which are
then tailored for research practice. Researchers are central to this
process, engaging with ERBs and funders to co-produce procedural re-
presentations of a study, and then specifying the procedural ethical
documents to research practice. Problems of conflicting world-views
are managed by adopting the lowest common denominator (i.e. an
ethical standard acceptable to all), whilst ensuring that documents re-
main reconfigurable for local application by researchers (Star, 2010;
Star and Griesemer, 1989).
The boundary object analytical framework therefore privileges re-
searchers' engagement with the multiple social worlds and research
ethics material ‘objects’ (i.e. documents), foregrounding their actions
towards and with procedural ethical documents to shape them into
boundary objects that facilitate their work processes: conducting re-
search. A further theoretical lens applied in this paper is the “back-
stage” work of research ethics as researchers develop procedural ethical
documents and apply for ethical approval, considering the invisible
work that surrounds the “front stage” when the documents are applied
to practice with research participants (Goffman, 1959; Star, 2010).
Goffman’s (1959) frontstage/backstage typology aligns with the
boundary objects framework's distinction between the cooperative ac-
tions of social worlds creating shared representations in documents
developed through ethical review, and their specification by re-
searchers engaging with participants in research practice. Conse-
quently, this analytical approach emphasises the distance between
procedural and in-practice ethics, demonstrating that despite co-
operative efforts, these documents remain neither neutral nor con-
sensual as their interpretive flexibility reflects the different perspectives
of the diverse social worlds applying them (Huvila, 2011).
By examining researchers' experiences through the lens of boundary
objects and applying Goffman’s (1959) frontstage/backstage typology,
attention is focussed on procedural research ethics as a social phe-
nomenon (Molyneux and Geissler, 2008). Notably, it foregrounds a
proceduralist and abstracted ethics embodied in documents, high-
lighting their co-production as a form of social work that is required by
ERBs and sustained by researchers. This framing aids understanding of
how procedural research ethics operates to enhance or constrain re-
searchers' responses to everyday ethical issues that arise in research
practice, illuminating tensions along the continuum between proce-
dural ethics and the situated in-practice ethical judgements of re-
searchers.
This paper adds to the empirical research ethics literature by ex-
ploring researchers' views of procedural ethics (Douglas-Jones, 2015;
Hedgecoe, 2012; Kingori, 2013, 2015; Molyneux and Geissler, 2008;
Wahlberg et al., 2013), examining how these shape researchers' lived-
through experiences of research ethics. It illustrates how procedural
ethics becomes embodied within standardised forms, which act to both
facilitate and constrain what is identified as an ethical issue. This study
further illuminates researchers’ negotiation of the procedural and in-
practice ethics relationship, demonstrating the strategies they employ
to balance adherence to procedural ethics, whilst retaining their moral
agency when responding to the contingencies of situated research
contexts.
A. Chiumento, et al.
2. Methods
2.1. The research setting
This study explores procedural research ethics from the perspective
of researchers conducting mental health research in LMIC settings. The
focus on mental health research arose due to AC being embedded in this
field and engaged in a project that involved the three case-study or-
ganisations. The study employed a multi-site case study design (Yin,
2009) in three South Asian countries. Anonymity procedures prevent
identifying the countries, however an overview of the research settings,
organisations, and systems of procedural ethical oversight are provided
to situate the results.
All three countries have experienced conflict and natural disasters
within the last two decades, currently host refugee and/or internally
displaced populations, and have ongoing political instability. The
countries are culturally diverse, with a multiplicity of ethnic, religious,
and language groups. At the time of study, C2 and C3 were classified as
lower middle income, and C1 as a low income country (World Bank,
2017). Youth literacy rates in all three countries continue to improve,
whilst in C2 and C3 around 40% of the older generations were literate
(United Nations Educational Scientific and Cultural Organization
(UNESCO), 2015).
Three research organisations conducting community-based mental
health research participated in this study: two local NGOs (C1 and C2),
and a Government Hospital (C3). The organisations were engaged in
community-based global mental health research involving the devel-
opment and effectiveness testing of low-intensity psychosocial or psy-
chological interventions, often involving mixed qualitative and quan-
titative research methods, with each project lasting between 2 and 5
years. This research typically involves conducting formative and pro-
cess evaluation qualitative research including individual interviews and
focus group discussions, and the administration of standardised ques-
tionnaires and checklists assessing for example participants’ mental
health symptoms (e.g. depression or anxiety), functioning, history of
exposure to potentially traumatic events, and levels of social support.
These are administered either for epidemiological purposes, or within
controlled trails testing the effectiveness of psychosocial/psychological
interventions. The interventions typically involved participants meeting
individually or in groups with a trained and supervised “lay helper”
administering a manualised mental health intervention. None of the
research involved testing new psychopharmaceuticals, or obtaining
blood samples or genomic data.
These types of studies therefore throw-up specific kinds of ethical
considerations including the appropriateness of consent, anonymity,
and data protection procedures for potentially vulnerable populations;
the sensitivity of questions in standardised questionnaires – for example
asking about suicidal thoughts or intent which may be culturally stig-
matised; the training and supervision of lay helpers administering
mental health interventions, and of researchers leading interviews or
focus groups or administering standardised questionnaires; and the
adequacy of safety procedures and referral mechanisms for those
identified to require specialised mental health support.
At the time of this study the organisations were each conducting a
different mental health study. All organisations were collaborating with
international partners based at UK or US Universities, and with global
bodies such as the World Health Organisation. Thus, the research par-
ticipants in this study drew upon their experience of working with a
range of populations (e.g. adults, children – including former child
soldiers and street children, refugees or internally displaced persons) in
rural, urban, and refugee or internally displaced persons settings.
The organisations typically had senior staff in permanent positions,
all of whom had higher degrees (e.g. PhDs), and were either inter-
nationally- or city-based, and oversaw projects in the city or at regional
sites. Supervisors were a mix of permanent staff and project-specific
hires with Batchelor or Masters Degrees, had experience of training and
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Social Science & Medicine 255 (2020) 112980
supervising research assistants (RAs), and were being mentored by se-
nior staff. PIs and supervisors had knowledge and experience of pro-
cedural research ethics, including formal research ethics training and/
or certification. RA's were short-term hires and had, at a minimum, high
school education, with many holding Batchelor Degrees. RAs were
employed on a project basis, although many continued from one project
to the next. All organisations had mandatory RA on-the-job training and
supervision which included knowledge and experience of the applica-
tion of ethical principles and ethics procedures in their day-to-day re-
search practice. The organisations in this study are therefore considered
typical of global health research (see Molyneux et al., 2013).
The three countries had sufficient similarity in procedural ethics
systems to draw comparisons. This included all countries requiring that
biomedical (including qualitative) research follow international ethical
guidelines and undergo ethical review. The three organisations in this
study were in receipt of international funding (i.e. from US National
Institute of Health; Grand Challenges Canada; or the UK-based
Wellcome Trust). As a result of multi-country collaboration all organi-
sations were required to obtain ethical approval both in-country and
from a UK or US University ERB, all of which followed a standardised
principalist approach to ethical review, as described above. In-country
ethical review was centralised in C1 through an ERB specialising in
health research; in C2 it was institutionally based with organisations
applying to either University or Hospital ERBs; and in C3 was devolved
to an accredited independent ERB at a research NGO. Typically ap-
proval processes commenced with in-country review, followed inter-
national University review who gave the final ethical approval. This
hierarchy of approval demonstrates the potential for power imbalances
inherent to the interaction of “local” and “international” approval
structures (Douglas-Jones, 2017). It is important to highlight that whilst
procedural similarity is assumed, each country had its own approach to
research ethics as local norms impacted on the prioritisation and op-
erationalisation of ethical principles. As this paper seeks to explore
researchers’ experiences of procedural ethics processes however, there is
sufficient similarity between the three countries for a multi-site case
study approach.
2.2. The research process
This study was conducted between September 2014 and February
2015, involving 35 individual in-depth interviews with researchers
from the three countries. Interview topic guides sought to explore
procedural and in-practice ethics, and interactions between the two.
This included how researchers: understood and defined research ethics;
engaged with ethical review; identified and responded to ethical issues
arising in research practice; approached research ethics training; and
how procedural and in-practice research ethics might be improved. This
framing of the topic guide to explore the continuum between proce-
dural and in-practice ethics builds on Guillemin and Gillam’s (2004)
research which foregrounds the gap between how researchers approach
the form-filling of procedural ethics, and their responses to “ethically
important moments” (p.265) that arise in research practice and may not
have been considered at the procedural ethics stage.
The researchers interviewed in this study had varying degrees of
engagement with procedural ethics commensurate with their role.
Typically this included the PI and supervisors developing research
protocols and participating in ethical review; and RAs receiving role-
related training in ethical principles and procedures from supervisors.
Additionally some PIs and supervisors had experience as ERB members.
As one study objective was to understand how procedural ethics was
constructed organisationally, speaking to all levels of researchers was
important for exploring understanding of, and engagement with, pro-
cedural research ethics; and the application of ethical procedures to
research practice.
Table 1 summarises the interviews conducted by country, identi-
fying categories of research participants (PIs, supervisors, and RAs). Six
A. Chiumento, et al.
Table 1
Interview overview.
Country 1: {Florin}
September 2014
Number of interviews 17
Interviewees gender Male Female
13 4 6
Interview location
UK – 2
In-country (no. of sites visited) 17 (3)
Conducted online in-country – –
Interpreter involvement Without interpreter With interpreter
All interviews 4 13
Primary Investigator (PI) 2 -
Supervisor 2 1
Research Assistant (RA) - 12
interviews were conducted online (via skype/adobe connect) in C3 due
to the security situation preventing in-person interactions. Interpreters
were hired at each research site, trained as co-interviewers with AC,
and were involved in all interviews to facilitate the participants’ full
engagement. For discussion of the methodological approaches to in-
terviewing with interpreters and online interviewing please see
(Chiumento et al., 2017, 2018).
All interviews were digitally recorded and the English conversation
transcribed and anonymised for analysis by using pseudonyms, and
fictional place and research project names denoted by { } - e.g. {Florin}.
Furthermore, quotes in italics represent talk conveyed by interpreters
on behalf of participants, whilst normal text represents participants
speaking in English. To enhance readability quotes have been tidied up,
with (…) indicating removed speech.
2.3. Researcher reflexivity
When researching the topic of research ethics with researchers,
questions of power, positionality, and reflexivity arose for the re-
searcher (AC) (Spencer and Richie, 2012). As a white British female
PhD researcher conducting interviews in South-Asia, AC was associated
with British colonial histories and contemporary global anti-terrorism
narratives. Positionality vis-a-vis participants was of an educated and
privileged female with professional relationships with senior staff at
organisations participating in this study. Organisational narratives
highlighted ACs “expert” status which could bring power dynamics to
interviews where participants might have felt their knowledge and
practice was being judged. Efforts to minimise this included under-
scoring the study objective: to understand the experiences of research
ethics from the participant's perspective. Moreover, ACs prior re-
lationships with some participants, and being embedded within the
organisations during data collection, led to informal interview dy-
namics which required attention to potential taken-for-granted shared
understandings. Further negotiation of power hierarchies arose through
the involvement of an interpreter that acted both to reduce the power of
AC as an interviewer, whilst reinforcing key areas of difference between
AC, the local interpreter, and the participant. Additionally, role ex-
pectations in the interviews shifted as the “researcher” role was con-
tested and sometimes reversed (Goffman, 1959). For example, research
participants scrutinising ACs performance as researcher by critiquing
the study's informed consent forms or commenting on lines of ques-
tioning in interviews (Chiumento et al., 2017).
Therefore, conducting research into research ethics brought a de-
gree of pressure for AC to “do” ethics “right”. Consequently, this study
had an internal feedback loop as interviews probed the ethical dimen-
sions of “being a researcher”, while at the same time these were being
actively experienced and negotiated by AC.
Social Science & Medicine 255 (2020) 112980
Country 2: {Bialya} Country 3: {Markovia}
December 2014 January-February 2015
9 9
Male Female Male Female
3 4 5
1
7 (2) 8 (1)
6
Without interpreter With interpreter Without interpreter With interpreter
5 4 2 7
2 - 1 -
2 - 1 1
1 4 - 6
2.4. Ethics
Ethical approval was obtained from the University of Liverpool and
ERBs in all three countries. All participants provided written voluntary
informed consent prior to interviews. Interpreters were hired for the
duration of in-country data collection, signed confidentiality agree-
ments, were paid at a local rate, and were provided with references
attesting to their role in this study.
2.5. Analysis
Thematic analysis was driven by an underlying phenomenological
epistemology (Schutz, 1944, 1945, 1967). The analysis process (Fig. 1)
involved open coding a sub-set of transcripts to inductively develop a
coding framework that continued to be refined throughout analysis
(Boyatzis, 1998; Green and Thorogood, 2014). Following initial coding
of all transcripts, the coded data was revisited to map participants’
narratives about procedural research ethics, tracing the development of
procedural ethical documents such as the research protocol and in-
formed consent forms; and views of ethical review. Throughout the
analysis emerging findings were discussed between co-authors to con-
firm their grounding in the data.
The analytic approach was to look at narratives describing experi-
ences of developing and applying procedural ethical documents to re-
veal the functions and roles they occupied, using this as an entry point
to examine the social practices surrounding procedural research ethics.
This process led to the identification of boundary objects as a produc-
tive theoretical lens, complemented by Goffman’s (1959) frontstage/
backstage typology. This analysis provides insight into how researchers'
engagement with procedural ethics shapes research ethics in specific
ways, with implications for ethics-in-practice.
3. Results
Researchers' descriptions of procedural ethics are reported in three
stages: (1) the development of procedural ethical documents by re-
searchers; (2) co-production of the documents by researchers and ERBs
through ethical review; and (3) application of procedural documents to
research practice by the researcher. The researchers' reflections on
procedural ethics processes that identify inherent limitations and sug-
gest improvements are then considered, and the results discussed
through the analytic frame of boundary objects and Goffman’s (1959)
frontstage/backstage typology to illuminate what is foregrounded and
supressed in procedural ethical documents and processes.
1. Researcher development of procedural ethical documents
4
A. Chiumento, et al. Social Science & Medicine 255 (2020) 112980

Fig. 1. Data analysis.

Procedural research ethics begins with researchers developing pro- identification of ethical issues in favour of form-filling to facilitate ap-
cedural ethical material objects: the study protocol, participant in- proval:
formation sheet, informed consent form, and other documents required
“ethical approval processes is to…pre-empt, or identify…ethical
for ethical approval. PIs and supervisors responsible for developing
challenges [but] the process has become (…) provide the answer the
these emphasised standardisation and a strategic approach to form
examiner is looking for” (Orville, C2 Supervisor).
filling (Israel and Hay, 2006):
The examiner analogy suggests that researchers have to evidence
“a lot of ethics forms are almost written to template now” (Kari, C2
ethical competencies in the written work of documents to gain approval
PI)
(Jacob, 2007).
“ethical procedures (…) we generally always do, and that the {ERB} Some researchers felt the standardisation of procedural ethical
approves.” (Hubert, C1 PI) documents limited their contextual adaptability: “Do we tailor make
our ethical processes enough to the population? Er, the short answer is
The standardised templates were described to frustrate
probably not.” (Hubert, C1 PI). In contrast, other researchers described

5
A. Chiumento, et al.
adapting procedures – notably informed consent – to respond to the
social context in which they would be applied (Hoeyer and Hogle,
2014). For example, researchers in all three countries described a
generalised fear of signing documents amongst potential research par-
ticipants, particularly amongst the non-literate. To avoid associations
with historical exploitation, researchers drew upon precedent for doc-
umenting informed consent without requiring signatures from other
settings, such as witnessed consent, documented verbal consent, and
the use of a thumb print or a line/mark in place of a signature. These
approaches produce the ethical outputs required for audit trails
(Strathern, 2000), whilst addressing research participants’ fear of
signing documents they cannot read:
“Almost 95% or 100% who are illiterate, …are afraid even to pro-
vide er, …thumb print. …Because they can't read. They say some-
times why you need? I don't know whether you have written…about
my house, my land. How can I, I do this? (…) [We] explore what
other, …organisation are doing, and what is international practice
(…) [They] just requested to them to mark. [Now] we are just re-
questing them to make, er, line…whatever you want to mark.”
(Masood, C1 Supervisor)
Once completed, researchers described organisational systems to
verify that the documents contained the necessary information ex-
pressed in ways to facilitate ERB approval, for example by using lay
language and clearly identifying key ethical principles:
“where there's an instrument that has been developed….the re-
search design has been done…I shall (…) review…the documents…
to check whether the, the basic [ethical] elements [are] …re-
flected.” (Brendon, C1 PI)
“my job, is often around, getting [the information sheet and in-
formed consent form] into as lay language as possible. …ethics
committees definitely scrutinise for lay language and making sure
it's not full of jargon.” (Kari, C2 PI)
For some researchers the process of developing research protocols
prompted reflection on their own internal moral compass:
“first ERB is you yourself [as a researcher] and then [as a] re-
spondent…would you be willing to, you know, give this answer…
self-reflection is needed [to] actually see the situation of the (…)
respondent. …self-ethics” (Shahashi, C1 Supervisor).
This emphasises researchers assessing study protocols from the per-
spective of potential research participants, echoing research that found
ERB members adopt a similar strategy (Simpson et al., 2015).
2. Researcher and ERB co-production of procedural ethical documents
Once developed by researchers, the procedural ethical documents
are submitted to the ERB for review. Through this process the docu-
ments are co-produced via researcher and ERB interactions. To situate
this process researchers' views of ERBs are provided, identifying the
role researchers' ascribe to ERBs in ethical review, followed by re-
searchers’ perspectives on the co-production of documents through the
ethical review process.
2a Researcher views of procedural ethical review:
Researchers described ERBs as a “guardian”, “protector”, and
“gatekeeper” responsible for “safeguarding” rights and duties, con-
ceptualising research ethics in line with principalism and highlighting
the ERBs role as external anticipatory regulator to prevent unethical
research:
“fundamental purpose of an ethical committee is…to stop (…) ex-
ploiting. …without that…people would not…have (…) any regula-
tions over what they do” (Orville, C2 Supervisor).
6
Social Science & Medicine 255 (2020) 112980
Researchers described instances of participant exploitation fol-
lowing conflict and disaster which may have shaped an emphasis on the
ERB's role as preventing researcher excess and protecting participants.
Overall, ethical review was seen as important: “I think all projects
do need ethical review and I would certainly defend that to the hilt.
Someone independent needs to have seen what you're going to do and
approved it” (Kari, C2 PI). This bureaucratic procedure is viewed as
promoting an ethical culture:
“a culture that…research has ethics…the research purposes should
be reviewed by a group of people, and at least that…they agree.
Even if they agree crap, but they agree, it went through the process
(…) a...first important step actually, in ethical research” (Shahsahi,
C1 Supervisor)
Procedurally LMICs ERB processes were recognised to increasingly
mirror those of high income countries (HICs), highlighting the globa-
lisation of ethical review procedures (Douglas-Jones, 2015; Wahlberg
et al., 2013).
Researchers identified multi-level in-country and sponsor country
review of research conducted internationally as routine. Commenting
on bioethical capacity, researchers questioned LMIC ERBs ability to
provide ethical scrutiny: “they're doing it - to the best of their capacity”
(Hubert, C1 PI). A critique echoed across all countries was the HIC ERBs
physical and cultural distance from LMIC research settings meaning
they were not considered knowledgeable about the research setting;
whilst LMIC ERBs were felt to lack technical mental health and research
methods expertise:
“I've had some ridiculous questions coming from the {HIC} com-
mittee…because they simply didn't…understand the (…) cultural
context of what I'm doing…who these [participants] are and who
(…) my team is. (…) I've had input from the {LMIC} committee
that…questioned the scientific rigor of my study which has (…)
reviews, won grants ( ). It's just ridiculous (…) a mis-match.”
(Orville, C2 Supervisor)
“[HIC] ethics review…I'm not sure…how much (…) they know the
local setting. I didn't think that all the (…) concerns they raised were
very appropriate” (Pedro, C3 PI).
Therefore, with multiple levels of review researchers emphasised
balancing the distance – geographical, cultural, and methodological -
between different ERBs.
Researchers called for proportionality in ERB review: “It should be
facilitatory...it should not be punitive (...)...it should be doing more
good than harm” (Pedro, C3 PI). This researcher argued that ERBs must
strike a balance between preventing researcher excess, protecting par-
ticipants, and facilitating research conduct (Hedgecoe, 2014). This is
threatened by ethical review that is perceived to overstep the ERB's
remit: “ethical approval can be...an exercise in applying control” (Or-
ville, C2 Supervisor), which can diminish researchers' perception of the
fairness of ethical review (Friesen et al., 2019). Taking this further,
researchers in C2 asked who protects researchers against the power of
ERBs? Responses invoked vulnerability:
“like the research participants become vulnerable in the face of a
researcher, (…) people who go into ethics committees and submit
proposals [are in] a way vulnerable to the {ERB}” (Spiro, C2 PI)
Appealing to vulnerability suggests risk of harm, with researchers
identifying examples including perceived arbitrary denial of ethical
approval, and removing questionnaires perceived as culturally sensi-
tive. Therefore, researchers voiced sharp critiques regarding the per-
ceived expertise of both HIC and LMIC ERBs to conduct a proportional
ethical assessment of proposed research.
2b Researcher and ERB co-production of procedural ethical documents:
A. Chiumento, et al.
Researchers described the ethical review process as always moving
towards the final goal of approval:
“…we submitted. Then {the ERB} provide the feedback: please, er,
revise this section. This is not clear. The consent form is not right.
Please include these things. Then we incorporate their feedback and
again submit and they provide the approval. (…) based on the
{ERB} feedback, if er you are not agreed with this then you justify
[your position].” (Milenko, C1 Supervisor)
This description suggests that researchers have to submit and be
submissive in the ethical review process, where researchers demon-
strate docility and deference to a higher authority (Dixon-Woods et al.,
2007). In this process ERBs retain the power over how “ethics” is de-
fined, understood, and applied in the explict content of procedural
ethical documents (Huvila, 2011). However, by identifying scope for
challenging ERBs, researchers affirm their agency in this process.
In the co-production process the ERB role was described by one
researcher in quasi-legal terms: “guards against...possible, er mal-
practice (…) holding it against the light...like you check er, …money,
for a water mark…is it real, is it good, is it solid? ...there's a neutral
body that does that” (Hubert, C1 PI). This analogy suggests that ethical
considerations are embedded within the fabric of a project and require
specific actions to reveal them, raising tensions over the respective
responsibilities of researchers to express the ethical issues inherent in a
project in standardised procedural ethical documents, and the ERB to
“see” these.
3.1. Researchers described efforts to educate or reassure ERBs
“ethics committees where...you have to reassure them that actually
these mental health questions have been asked of tens of thousands
of people in community studies all around the world, different
cultures (…) And if there was a…general, sensitivity around those
questions (…) I think we'd know about it.” (Kari, C2 PI)
The appeal to the collective lived experience of mental health re-
searchers (“we'd know about it”) is drawn upon to invoke the re-
searchers' moral authority to make decisions about what is or is not
ethical in a given setting, echoing critiques about the distance between
ERBs and the lived-through realities of conducting research.
3. Researcher application of procedures to practice:
Moral qualities of honesty, professionalism, and integrity were
identified as underpinning the accountability of individual researchers
and organisations, and prompting researchers to follow approved
ethical documents and procedures:
“Because (…) we are bound to what we agree. And we also have
fear,...if I don't follow…what I have submitted to the ethics board…I
would have consequences to myself and to my institution.”
(Shahashi, C1 Supervisor)
Researchers also discussed when the ERB should be informed about
specifying ethical documents for site application:
“minor changes, for example the words, the language…it's not ne-
cessary to resubmit the consent form to the {ERB}. If we change the
methodology (…) change the er… study districts, sample size...we
inform the {ERB}.” (Milenko, C1 Supervisor)
This description demonstrates that researchers’ continue to tailor
documents and procedures once they have been approved by ERBs for
site-use.
Community embeddedness was highlighted as a mechanism for in-
forming the specification of ethical procedures to research practice:
“principles remain the same (…) [but] their application can only
come from the deep understanding of the population. (…) Working
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Social Science & Medicine 255 (2020) 112980
with them, knowing their priorities…their culture...what is im-
portant to them. (…) You're part of the situation.” (Pedro, C3 PI)
Alongside emphasising the universality of ethical principles, con-
textual factors that enabled greater understanding of cultural attitudes
towards mental health, the impact of conflict or disaster, and percep-
tions of research shaped the specification of ethical principles to re-
search practice. These important considerations were not reflected in
researchers’ descriptions of their approaches to standardised procedural
ethical documents. This suggests that neither local or international
ERBs were provided with this contextual information, which was
viewed by researchers as arising when applying the documented pro-
cedures to practice, underlining the distance between procedural and
in-practice ethics.
To bridge the gap between ethical procedures and practice re-
searchers suggested a role for ethical reflection:
“It's something to put on paper based on scientific principles,...one
thing to go and you know get…information based on that. So how
do you bridge these two things? Pfffff...I think it's a continuous sort
of process of reflection and learning (…) you need...scientific rigor,
and you also need the ethical rigor (…) Budisplayquotet then to a
specific population, you need to adapt” (Orville, C2 Supervisor)
This description of continuous reflection and adapting research
methods and procedures to the context reiterates the distance between
written documents and the lived-through reality of research conduct.
Researchers identified the value of the physical documents gener-
ated through ethical approval – the approved research protocol and
ethical approval letter - for offering proof that research follows ethical
norms:
“without making protocol, …it's really hard to function (…) going to
any organisation or going to field, they ask (…) What protocol they
have.” (Ranjit, C1 RA)
“people's in the community who has some knowledge about the
research, they say…, ‘Do you have some ethical approval from the
{ERB}?’” (Milenko, C1 Supervisor).
These call attention to the material and social role ethical approval
occupies in facilitating research practice, including how gatekeepers
request evidence of ethical approval in order to grant access to research
sites. Ethical approval was also identified as necessary for publication:
“to publish, you have to have…ethics clearance.” (Shahashi, C1
Supervisor). Consequently, at the intersections with the social worlds of
gatekeepers, research participants, and publishers, ethical approval
documents act as material boundary objects that explicitly represent an
organisation's adherence to ethical standards (Huvila, 2011).
4. Researchers' reflections on procedural ethics:
4a Limitations of procedural ethics
Being restricted to reviewing written documents was identified as
an inherent limitation of procedural ethics: “look at the materials and
(…) approve the materials, and that's all” (Kari, C2 PI). The anticipatory
nature of ethical review, and the strategic form-filling approach to
ethical approval documents described by researchers, contribute to a
disconnection between procedural and in-practice ethics:
“sit in ah, table and discuss all these things, but the issues actually
come when you go into the field (…) most of the things we ex-
perience…are not written in books, you don't find them in guide-
lines. So you just have to go with your gut feeling and stick to is this
right or wrong?” (Mercurius, C2 Supervisor)
The challenges researchers face in pre-emptively developing pro-
cedural ethical documents was recognised: “impossible to anticipate
every single way that a person would react” (Orville, C2 Supervisor),
suggesting that researchers anticipate experiencing ethical issues in the
A. Chiumento, et al.
field beyond those anticipated at the procedural ethical stage
(Guillemin and Gillam, 2004; Heimer, 2013).
Researchers acknowledged the limits to ERB auditing for extending
the problems inherent to ethical review, namely that they involve only
auditing what can be measured (Power, 1997; Strathern, 2000) through
pre-emptive self-reporting or announced site visits that permit re-
porting what ought to be rather than what is:
“send...research update (…) present your er research findings.
...Because the {ERB} provide the ethical approval, in the powerpoint
presentation, we just mentioned there that we provided…some re-
freshment. But in the real practice (…) instead of the food we pro-
vide the money. But er, in the report we mention that we provide
some…refreshment.” (Milenko, C1 Supervisor)
Regardless of the ethical status of these actions, it is clear that re-
searchers felt compelled to only report to the ERB what was in the
approved written protocol rather than what had happened in practice,
undermining the purpose of auditing and missing opportunities to as-
sess the revised procedures.
For one researcher clearly conveying the ethical issues inherent to a
study in ethical approval documents was paramount: “I strongly believe
the person who takes the proposal into the ethics committee has the
responsibility to try and tease out, in advance, the ethical issues” (Spiro,
C2 PI). However, findings from this study suggests that the standardised
forms of procedural ethics, coupled with researchers seeking to provide
responses to secure approval, act to inhibit engagement with potential
ethical issues that may arise in practice. Moreover, whilst researchers
could seek to make more explicit the operationalisation of ethical
principles in procedural ethical forms, one researcher questioned: “If
that would translate in more ethical research, I wonder?” (Hubert, C1
PI). This underlines the gap between procedural and in-practice ethics,
recognising the challenges to comprehensively anticipating the relevant
ethical principles and how they might be applied in practice.
4b Enhancing procedural ethics
Researchers’ suggestions for enhancing procedural ethics focused
upon adjustments to the process, for example incorporating in-person
discussions:
“interactive manner, rather than taking a very top down, closed
decision (…) consensual decision, rather than…say (…) “we don't
think this is appropriate so you have to change this in the form and
resubmit.” (…) a representative, from the team (…) have a discus-
sion. Try and understand what's going on before {the ERB} start [to]
pass a judgment” (Orville, C2 Supervisor).
Suggesting in-person contact highlights ERB-researcher social in-
teraction as a way to make informed judgements about how research
will be managed in practice rather than doing this via documents as a
proxy (Hedgecoe, 2012).
A number of researchers suggested that ERBs should increase their
lay representation and involve RAs responsible for applying ethical
documents and procedures to research practice:
“It looks ethical from our point of view, but what about the point of
view of the participants?” (Mercurius, C2 Supervisor)
“more locally led... How many people (…) on the ground, who are
researchers, are involved?” (Pedro, C3 PI)
Furthermore, suggestions were made for repositioning ethical au-
diting as capacity building:
“researchers to come, and share their ethical practices. And learn
from each other..., there has to be no penalty for…mistake.
Orientation (…) should be not as punitive but as a capacity building.
(…) improving the research culture” (Shahashi, C1 Supervisor)
8
Social Science & Medicine 255 (2020) 112980
“learn from different settings. How different studies are done (…)
voice of the participant...the research assistants.” (Orville, C2
Supervisor)
“[if the ERB] clearly suggested please mention (…) what types of
ethical problem er, arise...during your study period, and how could
you handle?” (Milenko, C1 Supervisor)
Therefore, ERB's were viewed as in a position to promote reflection
upon the application of ethical procedures to practice (Eckenwiler
et al., 2015; Guillemin and Gillam, 2004), and encourage cross-learning
between researchers.
4. Discussion
This study has explored the multi-dimensionality of ethical en-
gagement that is being facilitated or suppressed through procedural
ethics processes as described by researchers. This draws attention to the
relationship between ethics, governance, and research practice medi-
ated via procedural ethical documents, and social norms of interaction
that act to discipline the scope of procedural and in-practice ethics in
specific ways.
Procedural ethical documents embody features of boundary objects:
they are simultaneously generalised and specific, concrete and abstract,
standardised and customised (Star and Griesemer, 1989). As described
by researchers in this study, procedural ethical documents act as ex-
plicit shared representations of moral intent when co-constructed be-
tween researchers and ERBs, satisfying the informational and work
needs of both (Star, 2010). Researchers contend that the generalised
and abstracted content of procedural ethical documents are demanded
by standardised ethical review forms and processes, which in turn re-
flect the historical proceduralisation of principalism (see e.g. Hoeyer
and Hogle, 2014; Friesen et al., 2019, & Wahlberg et al., 2013 for
discussions of the emergence of procedural ethical review). When in-
teracting with social worlds such as gatekeepers and publishers the
physicality of these documents becomes important, providing a mate-
rial information source that confirms the researchers’ ethical intent.
Simultaneously, when applied to practice these same documents are
tailored and customised by researchers to the local context, whilst ad-
hering to the generalised normative principles they embody – epito-
mised in the invention of ways to comply with informed consent re-
quirements. In this process researchers adhere to the moral intent
embodied in approved procedural ethical documents, whilst nego-
tiating the lived-through socio-economic and structural realities in
which research is embedded (Hoeyer and Hogle, 2014; Molyneux and
Geissler, 2008).
Adopting a strategic approach to developing documents that em-
phasise form-filling and “writing to template” demonstrates how re-
searchers respond to ritualised and culturally normative standardised
forms and ethical review procedures (Guta et al., 2013; Jacob, 2007).
Applying the analytical framework of boundary objects makes visible
the role of procedural ethical documents in bridging tensions inherent
to the researchers cooperative backstage role when co-producing these
documents with ERBs; and the subsequent actions of research practice
where their interpretive flexibility allows researchers to reshape the
same documents away from the ERBs gaze as they navigate the moral
demands of operationalising procedural ethics to practice (Hoeyer and
Hogle, 2014; Huvila, 2011; Molyneux and Geissler, 2008). This process
is recognised by Star (2010) as the “invisible work” (p.606-7) that
surrounds the conduct of science, foregrounding the gap between
formal representations in shared material objects, and the unreported
tailoring of these through local practice.
Tensions inherent in the abstraction and standardisation of proce-
dural ethical documents are notably that researchers’ write-out context
and fail to tailor ethical procedures to the research setting. In this ap-
proach the moral intent of research ethics eclipses researchers engage-
ment with the practice of enacting ethical procedures with moral actors
A. Chiumento, et al.
embedded in diverse socio-cultural and structural contexts (Hoeyer and
Hogle, 2014). It also deprives ERBs of contextual information that must
be weighed alongside ethical principles during ethical review (Fletcher,
1967; Friesen et al., 2019; Molyneux and Geissler, 2008). This ab-
straction and standardisation of procedural ethical documents may also
increase tensions between researchers and ERBs as researchers perceive
ERB decision-making as unjust, in turn creating researcher incentives to
downplay morally relevant information or engage in “ERB shopping” to
obtain approval (Friesen et al., 2019, p.3).
Researchers respond to the ERBs regulatory governance role by
ensuring a frontstage reflection of ethics expressed in ways demanded
by the forms, aiming to facilitate the ERBs work practices and avoid
raising red flags that indicate an ethically problematic study (Gillam
et al., 2009). This is assisted by researcher and ERB socialisation to the
norms of procedural ethical review (Goffman, 1959), leading ERBs to
trust in researcher adherence to ethical norms (Hedgecoe, 2012).
Nevertheless, Hedgecoe (2014) has identified that this socialisation can
lead to ERB and researcher co-construction of deviance from ethical
standards as workgroup cultures emerge founded upon presumed re-
searcher trustworthiness that act to diminish ethical oversight. This
study extends this finding to suggest that repeated researcher-ERB in-
teractions mediated via procedural ethical documents may result in the
co-construction of a frontstage impression that procedural ethical stan-
dards are being realised, with the normative framework embodied in
these documents subsequently reshaped through engagement with the
situated demands of research practice (Goffman, 1959). Thus, the
boundary object format encourages researchers to supress engagement
with the situational context in which ethical principles will be oper-
ationalised. As such, the documents come to operate in the moral do-
main of what ought to be through instilling morally sanctioned inten-
tions which “produces a form of active “unknowing” [and] shapes a
remit of ignorance” (Hoeyer and Hogle, 2014, p.352). It is important to
emphasise that this is not to say that the normative framing of ethics
shifts between procedures and practice, or that ethics-in-practice is
truer. Rather, what this analysis foregrounds is the limitations of the
role that the material objects of procedural ethics play in researchers'
lived-through situated ethical decision making. It is the “remit of ig-
norance” promoted by appeals to the lowest common denominator
between ERBs and researchers in procedural ethical documents that
provide researchers with the autonomy to reconfigure ethical proce-
dures to practice in line with their own moral values (Kingori, 2013)
and the demands of a situated research context. This suggests that re-
search ethics is emphasised through the interpersonal social interac-
tions inherent in research conduct, as reflected in literature exploring
the RA role (see e.g. Molyneux et al., 2013). Researchers highlight the
importance of contextual knowledge such as local norms and partici-
pant expectations to inform site specification of procedures, as localised
practices interact with standardised global imperatives to generate new
knowledge and practice (Hogle, 1995). Reshaping procedural ethical
documents to research practice can be viewed as what Huvila (2011)
describes as a “hegemonic intervention” (p.2536) that aims to establish
unambiguity, whilst being infused with the power of the interpreting
social world and the discourse and material practices they inhabit.
However, researchers’ narratives emphasise the role of procedural
ethics in promoting an internal moral compass and attention to con-
tinuous ethical reflection, suggesting that the frontstage social process
of acting towards and with procedural ethical documents acts to es-
tablish an ethical framework that is carried forward into the field.
Consequently, researchers' narratives identify the multiple social
worlds of researchers, ERBs, participants, and others such as gate-
keepers and publishers that engage with the procedural ethical docu-
ments acting as boundary objects, as researchers' actively seek to ac-
commodate the varying needs, norms and social context of each. This
re-emphasises the continuum between ethical procedures and research
practice as researchers seek to address the “misfit between complex and
fluid social worlds and increasingly standardised and regulated ethics
9
Social Science & Medicine 255 (2020) 112980
procedures” (Miller and Boulton, 2007, p.2208). Achieving this ne-
cessitates researchers' performative actions to maintain a frontstage
facade of ethical universalism that assumes the ethical homogeneity
that principalism and standardised procedural ethical processes are
searching for; but that can be reinterpreted in the material actions of
researchers’ situated ethical decision-making when applying these
generalised and abstracted documents in research practice.
4.1. Study strengths and limitations
Empirically investigating researchers' experiences of procedural
research ethics in three South Asian settings fills a gap in existing
knowledge, adding to the empirical and bioethical research literature
on how ERBs approach procedural ethics (Dixon-Woods et al., 2007;
Douglas-Jones, 2015; Gillam et al., 2009; Guta et al., 2013; Hedgecoe,
2012, 2014; Miller and Boulton, 2007). Notably this study adds to the
existing literature by exploring the views of researchers based in LMICs.
A limitation to the study is the abstraction of researchers’ experiences
from their everyday local moral grounding due to anonymity proce-
dures. Efforts to address this limitation include providing illustrative
descriptions of organisations, settings, and typical ethical considera-
tions that arise when conducting global mental health research. Re-
cognising that globally procedural research ethics follows a broadly
principalist approach and adopts recognisable procedures suggests that
the study findings have global relevance. Furthermore, many of the
procedural ethical issues raised in this paper are reflected in the wider
literature, suggesting general applicability of findings. Methodological
limitations include the potential for social desirability in the partici-
pants interview responses to protect organisational or personal re-
putations (Chiumento et al., 2017), although open discussion of chal-
lenges suggests this did not occur. It is also possible that the
organisations in this study are a-typical of global mental health research
organisations as the study did not include inter-governmental organi-
sations, therefore further confirmation of findings with these organi-
sations would be valuable.
5. Conclusion
Given that “ethics review determines what is possible in the pro-
duction of knowledge: what can be done, what can be asked, by whom,
and for what purpose” (Guta et al., 2013, p.307) effective procedural
ethical processes are of critical importance. Through the application of
the analytical framework of boundary objects, this study has examined
researchers' negotiation of the standardised documents and processes
required by procedural ethics. This has shown that researchers are
searching for a procedural ethics system that delivers a process per-
ceived as fair (Friesen et al., 2019), coupled with the production of
outputs such as ethical approval to facilitate the work of conducting
research. Findings also show that researchers recognise the importance
of procedural ethical documents interpretive flexibility to facilitate the
application of ethical procedures to the situated research context.
Procedural ethical documents acting as boundary objects, and the
standardised governance process of research ethics have been shown to
deliver these features. Goffman's typology yields further insight by
drawing attention to the ways that researchers act with procedural
ethical documents acting as boundary objects according to their un-
derstanding of the needs of each social world, and their perceived level
of control over shaping the operationalisation of procedures to practice.
Therefore, an important finding that extends previous studies is the
pivotal role played by procedural ethics documents acting as boundary
objects that enable researchers to strike a balance between adherence to
standardised procedural research ethics, and retention of their own
moral agency when implementing procedures in research practice; and
researchers’ positioning of procedural ethics according to the social
world being acted towards. Consequently, this paper has drawn atten-
tion to what procedural ethics foregrounds, namely researcher and ERB
A. Chiumento, et al.
co-construction of regulatory compliance that is mediated via doc-
uemnts acting as boundary objects; and what it supresses, attention to
the idiosyncrasies of the contextually embedded practice of research
conduct. Findings from this study are relevant to research ethics more
broadly, providing empirical evidence about the strategies employed by
researchers, who are pivotal actors navigating the tensions between
procedural and in-practice ethics.
Author contributions
The data for this manuscript was collected by AC as part of her PhD
research. The research design was conceptualised by AC, with super-
vision guidance from LF and AR. Data analysis was conducted by AC
and shared regularly with LF and AR for review and feedback on
emerging findings. The presentation of this manuscript to focus on re-
searchers’ experiences of procedural ethics processes was conceived and
written by AC. LF provided input into the theoretical underpinning of
the qualitative data analysis, and repeated manuscript editing and re-
visions. AR reviewed the full manuscript for editing. All authors have
reviewed and approved the final manuscript for submission.
Funding statement
The data used in this article were collected as part of AC's doctoral
research generously supported by the Economic and Social Research
Council [ES/J500094/1]. The funder had no role in the collection,
analysis, interpretation, or reporting of data.
Acknowledgements
We would like to thank all who participated in this study for gen-
erously giving up their time to share their experiences of research ethics
with AC. We would also like to thank the two interpreters from each of
the three countries for their valuable contributions to the study, notably
supporting the full engagement of research participants, involvement in
interview transcription, and for offering their valuable insights and
reflections in early stages of data analysis. We would also like to thank
Professor Jude Robinson and the anonymous peer reviewers for their
comments on earlier drafts of this paper, your suggestions have helped
enormously.
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