‘Stop Stealing Our Stories’: The Ethics

of Research with Vulnerable Groups

EILEEN PITTAWAY, LINDA BARTOLOMEI AND
RICHARD HUGMAN
Centre for Refugee Research
School of Social Sciences and International Studies
University of New South Wales
Sydney NSW 2052
Australia
[email protected]
http://www.crr.unsw.edu.au

Abstract
The article discusses the challenges and opportunities faced when integrating par-
ticipatory methods into human rights-based research. It describes the development
of a participatory action research approach designed to fulfil the aim of undertak-
ing advocacy-focused research grounded in human rights and community partici-
pation. It reflects the principles of anti-oppressive social work and the ethics of
undertaking research with vulnerable populations. In line with other contributions
to this special issue, the article explores questions such as: ‘Where does knowledge
about the story come from and how is it passed on?’; ‘What spurs ethical thinking
at an individual and organizational level?’; and ‘How can ethical sensitivity and stra-
tegic effectiveness be combined?’

Keywords: refugee research; reciprocal research; participation; ethics

Journal of Human Rights Practice Vol 2 | Number 2 | June 2010 | pp. 229– 251 DOI:10.1093/jhuman/huq004
# The Author (2010). Published by Oxford University Press. All rights reserved.

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 230

You know many of the organizations came to the refugee camp and
they see the refugees in many ways as the monkeys . . . like a monkey in
a cage . . . and then they thought that if we show this monkey to . . . the
big countries of power like the EU [European Union], they will
have a lot of money and it will benefit us [the non government
organizations] . . . They documented things [stories] of the women that
is oppressed, then when they get money they use some for the refugees
but mostly they use for themselves. (Discussion with a refugee men’s
group, Thai – Burma border, 2009)

Introduction
Based on the work of authors Pittaway and Bartolomei with refugee groups
in sites around the world, this article discusses some challenges and

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 231 The Ethics of Research with Vulnerable Groups

opportunities facing those working to integrate participatory methods into

human rights-based research. The article analyses incidents and discussions
the authors have had with refugee research partners they have worked with
over the past eight years, and explores how the authors have tried to address
the challenges posed to them. It describes the development of a specific parti-
cipatory action research approach designed to fulfil the aim of undertaking
advocacy-focused research grounded in human rights and community par-
ticipation. The approach they have developed is designed for working with
communities and individuals experiencing multiple oppressions and persecu-
tion. It reflects the principles of anti-oppressive social work and the ethics of
undertaking research with vulnerable populations.
As with other contributions to this volume, the article seeks to address the
following questions relating to ‘the responsibility to the story’: ‘Where does
knowledge about the story come from and how is it passed on?’; ‘What
spurs ethical thinking at an individual and organizational level?’; and ‘How
can ethical sensitivity and strategic effectiveness be combined?’

Background
In recent years there has been a sustained increase in the number of refugees
and internally displaced persons (IDPs). Currently an estimated 35 million
‘persons of concern’ fall under the mandate of the United Nations (UN)
High Commissioner for Refugees (UNHCR) (UNHCR, 2009). Forced
migration results in disrupted community and social networks, contests over
limited resources, multiple public health risks, and heightened instances of
human rights abuses, including sexual and gender-based violence. These
factors, and the associated vulnerability and marginalization of displaced
populations, highlight the need for knowledge and understanding of refugee
and IDP populations. This has led to a considerable rise in research on and
among these groups, which is invariably undertaken in complex, difficult,
and sometimes dangerous settings. This can place refugees at great risk of
exploitative and damaging research practices (Allotey and Manderson,
2003), however unintended this might be. While the ethics of academic
research involving human subjects has long been a concern for universities
and researchers, it is now becoming recognized that the ethics of research
with vulnerable communities needs to be readdressed in the light of the chal-
lenges posed by research among refugees and IDPs. The authors of this
article believe that the ethical challenge is for researchers to add value to the
lives of the people they are researching, recognizing them as subjects in the
process and not simply as sources of data (Hugman, 2005, 2010).

Ethical Challenges in Research with Refugee and IDP Communities

Recent academic literature identifies key concerns regarding the ethics of
research with refugee, IDP, and other at-risk populations (Jacobsen and
Landau, 2003; Mackenzie et al., 2007). These include the intersecting issues of

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 232

power and consent, confidentiality and trust, risks to researchers and potential
harm to participants, as well as the broader cross-cutting issues of gender,
culture, human rights and social justice. While there is growing evidence of
these challenges, much of it is dispersed across a range of academic disciplines,
is descriptive in nature, and offers little practical guidance to researchers
working with refugee and IDP populations and those responsible for ethics
oversight (Reed, 2002). In particular, a model of bioethics (Beauchamp and
Childress, 2001) tends to dominate ethical frameworks in western research
institutions. This model is well-founded, highly regarded, pluralist, and robust,
in that it embraces principles of respect and dignity, justice and beneficence
alongside that of non-maleficence (seeking to do no harm). However, the way
in which it has been developed and applied in research contexts frequently
lacks the capacity to address the complexity of working with vulnerable popu-
lations (Jacobsen and Landau, 2003; Mackenzie et al., 2007).
Power imbalances between researchers and participants raise complex ethical
issues. Such issues are present in the biomedical and other western professional
fields, but the mechanisms for dealing with these tend to assume that partici-
pants have access to courses of redress in cases of grievance. Even though such
assumptions are often open to question in western health settings (for reasons
of gender, socio-economic class, educational background and so on), they are
completely untenable in research with refugees and IDPs, especially in oppres-
sive environments, where autonomous decision-making is seriously limited, or
where these vulnerable participants are involved in legal status determination
and/or resettlement procedures. Researchers are often perceived as having
power to effect change at both an individual and community level, and refu-
gees are very cognizant of this fact. Refugees constantly approach researchers
seeking assistance for themselves or their family, providing what is often com-
pelling evidence of malpractice or neglect in the systems of protection that
govern their lives. Sometimes refugees take considerable risk to raise these con-
cerns, as in many camps authorities will punish refugees after the researchers
have left for perceived breaches of confidence. In one site in Bangladesh, refu-
gees who talked to researchers had very serious threats made against them by
criminal elements operating in the camp, necessitating high-level intervention
from those in authority (UNHCR, 2007). In another instance, following a visit
by the authors, over 100 families at risk were resettled from a particular
refugee camp in an African nation to countries in the West. While on the one
hand this could be viewed as a good outcome, on the other hand it privileged
those people who participated in the research over those who had not, despite
there being no objective assessment of the comparative need of those who were
resettled and the many other families at risk in the camp (reference withheld to
ensure the security of those involved). This in itself is an ethical dilemma.
As discussed below, when working with populations at risk, there can be
ethical issues involved in publishing research findings. Apart from the most
obvious problem, that of researchers publishing data without due

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consideration of the potential impacts on the communities involved, there

are more complex issues. The desire of the refugees themselves to have their
‘stories’ told to the international community can outweigh consideration of
the potential danger to themselves and their communities. Finally, the
researcher sometimes has to make a judgement as to whether or not the
refugee community, which may have been in an isolated camp for 15 years,
can understand the implications of, for example, releasing a DVD to the
media. We have personally experienced the reaction of refugees resettled to
Australia when they have found that their images are widely used in books
or on DVDs. While for the most part they are proud to be featured, at times
they are shocked to find that their story is public knowledge. When giving
‘informed consent’ while still in the camp, they had little understanding of
what this might mean at a later stage of their lives.
In refugee and IDP contexts, complex and contested issues of community
representation are also often encountered. Community leaders and those fam-
iliar with the language, social systems, and culture in these settings may exert
tight control through their ability to offer patronage to some researchers
(Ebbs, 1996). This poses both practical and philosophical problems, in that
researchers may be asked to compromise their methodology, or participants
may not be giving genuinely voluntary consent. At the same time, however,
without such patronage access may be impossible. This is often exacerbated
by the non-governmental organization (NGO) gatekeepers, who control
access to community leaders. These particular leaders have a vested interest
in ensuring that the NGOs who validate their power are protected from nega-
tive research outcomes. While community leaders may be prepared to take
risks disclosing information, community members might not share this view.
Often this divide is gendered, with male leaders speaking on behalf of the
entire community (Gujit and Shah, 1998). Despite a strong push by the
UNHCR to include female representatives on all camp committees, these are
often only token appointments. ‘Yes. They made the men let us come to the
committee, but they will not let us speak, and we do not have a vote’ (Female
refugee from Sudan in Ethiopia, 2005). At other times the female representa-
tives are the wives and daughters of the male leaders. ‘They just say what
their husbands tell them to – otherwise there is trouble’ (Female refugee from
Burma, Thai – Burma border, 2004). Researchers who do not understand this
complex network of relationships will only ever record an ‘official’ version of
events. On the other hand, untangling the web of loyalties and benefits to
record other versions of realities in camps and urban sites can be time-
consuming and frustrating. How do researchers ever know that the version
they have recorded is an accurate reflection of the refugee experience?
Pushing past these multiple gatekeepers and getting to the grass roots com-
munity is a further ethical challenge for many researchers. It speaks to the
question of where the story comes from, and confronts the rhetoric of com-
munity participation, which implies that all community members have equal

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 234

access to participate in research. It challenges the researchers to develop strat-

egies to reach out to the broader community members whilst still respecting
and acknowledging the status of the gatekeepers.
Confidentiality is important for protecting both the identities of and infor-
mation provided by research participants. In refugee and IDP contexts confi-
dentiality may be especially difficult to maintain and the hazards of broken
confidences may be extreme (Karen Women’s Organization, 2004; Leaning,
2001). It appears that researchers in refugee and IDP settings have often for-
gotten the capacity that their work might have to cause unintended harm to
participants through inappropriate disclosure of identities or other personal
information that to the researchers may have appeared innocuous. For
example, stories or photographs identifying individuals in documents may
become known in the original context, despite being published in another
country or another language (Beauchamp and Childress, 2001; Mackenzie
et al., 2007). This can call into question the values or rigour of the ‘ethics of
consent’ and confidentiality (Pittaway and Bartolomei, 2009b). In all of these
situations, achieving a mutual understanding of voluntary and informed
consent is a considerable challenge (FMRS, 2003; Hyndman, 2000).

When I go into a horrendous camp situation as a white researcher, the

people are so desperate for any form of assistance they would agree to
anything just on the off-chance that I might be able to assist. It makes
asking for permission to interview them or take photographs a farce. . .
What does ‘informed consent’ mean in an isolated refugee camp with
security problems and no proper interpreters? (Personal comment
Linda Bartolomei, 2004)

In contrast, the principle of reciprocity suggests that the risks and costs
associated with participation in research can be offset by the delivery of direct,
tangible benefits to those who participate. To achieve this, researchers need to
return to the community something of real value, in forms determined by par-
ticipants themselves. However, there is little guidance for researchers on how
to negotiate benefits with participants, and current funding arrangements
usually provide neither time nor resources to effectively do so. In the case
study which was the springboard for this work, the reciprocal benefits the
women’s groups wanted were training and programme support. These items
have continued to be the major ‘goods’ exchanged for research data in all
refugee sites. The research team has now undertaken over 30 research and
training-based consultations in eight different countries, and in every case
training was seen as a major benefit by the displaced community.
Conversely, ethically unsound research practices can exploit and disem-
power refugees and IDPs, promote distrust or rejection of the solutions emer-
ging from the research, and may lead to emotional or material harm. For
example, research may raise expectations for participants that cannot be

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fulfilled and introduce dangers of ‘retraumatization’ if sensitive issues are

handled inappropriately.
Researchers themselves also face considerable risks working in some
refugee and IDP settings. These include moral and ethical dilemmas of
researching with those engaged in or affected by illegal activities (including
rape, sexual exploitation, trafficking, and the use of child soldiers), and the
risk of traumatization through exposure to stories of torture or abuse, grief
and loss, and crimes against humanity (Jacobsen and Landau, 2003).
Research institutions have a duty of care to ensure that researchers are not in
undue danger, and this includes access to counselling support when it is
known to be likely that they have spent time interviewing people about
torture and extremely traumatic stories. This is seldom taken into account in
research funding or institutional research support structures.
At other times, lack of action by a researcher can result in serious harm to, or
even the death of, a refugee or IDP. Intervention in the lives of research partici-
pants may be ethically required, such as the intervention described by Pittaway
and Bartolomei (2003) who intervened in the case of a nine-year-old girl who
had been raped and badly injured and who was not receiving adequate treat-
ment and support. We would argue that when a human being is in such need
and the researcher is in a position to respond appropriately, non-intervention in
the name of ‘objective’ research is ethically untenable.

Negotiating an Ethical Research Framework with Refugee and

IDP Communities
However, ethical issues and challenges detailed in this article came not from
academic pursuit, or peer review, but were raised by the refugee communities
with whom authors Pittaway and Bartolomei worked. They challenged us to
consider both our own ethical research practice and the value of the organiz-
ational ethical arrangements which informed our work. More importantly,
they challenged us to examine if we actually applied the principles of human
rights and community participation, which we so proudly espouse in theory,
to our work on the ground.
It began when the authors received funding from the Australian Research
Council from 2002 – 2005 to focus on the situation of refugee women and
girls at risk, who experienced systematized forms of rape and sexual abuse.
It was decided to compare the experience of populations of refugees from
Burma living in Thailand, and refugees from the Horn of Africa in Kenya.
The population in Thailand were invited to be partners in the research
project because Pittaway had been providing training to the groups
since 1993, working with them to prepare advocacy materials for the UN
Commission on the Status of Women, various UN World Conferences, and
the [then] Human Rights Commission. She had established a sound working
relationship with the groups, and knew of their need for change, and their

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desire to tell their stories and to advocate at the UN. The initial reaction of
the women to the news of the research funding was disappointment that
someone they had trusted as a trainer should suggest that they now work
with her as research subjects. Although the women had expressed the desire
to have their stories told and their issues addressed at an international level,
their deep fear of exploitation by researchers made them wary of the
researcher. The concerns they raised centred around:

† exploitation by previous researchers and journalists, including unauthor-

ized publication of names and photos, leading at times to situations of
danger for those participating in the research;
† false expectations of assistance from researchers;
† lack of feedback from research, including promised reports and photos,
after giving time for interviews and disclosing personal stories;
† fear of backlash from government authorities and military leaders within
camps;
† mistrust of white researchers; class and ethnic distrust of local workers
and researchers;
† distrust of research done by researchers who ‘fly in and fly out’ of camps
and conflict zones without considering the local social, economic and pol-
itical consequences;
† lack of consultation about recommendations and strategies;
† the inability of many researchers to cope with the absolute horror of the
experiences of research participants;
† the potential for retraumatization, without any follow up support.

The women discussed their fear about the unintended consequences of par-
ticipating in research, often learned from hard experience. Women, who had
invariably overcome deeply ingrained distrust of white and westernized or
higher class local researchers and service providers, found that too often
their initial fear of disclosure was well-founded.
They asked us to lead them to women who had been raped so they
could record their stories. ‘Tell us what happened – how did you feel?’
Women were so upset after the interviews, we did not know what to
do. We never heard from them [the researchers] again – we decided
then that we would never work with researchers again. They stole our
stories. We can gather the stories ourselves from our own people – you
can help [with training]. (Women’s Group, Thailand, 2003)
We would argue that in many cases these incidents constitute a violation of
human rights. It firmly places refugees as ‘objects’ of research and denies
their agency and capacity to respond to the serious issues affecting their com-
munities. The concerns of the women add an additional dimension to the
question of where does the story come from and how is it passed on. They
speak to ‘ownership’ of the story once it has been told, and how much

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control research participants have over these once they are taken away from
them. They directly address the harm that can be done by the unethical
misuse of data. They table the value of stories and the benefits that could be
expected from sharing them and the benefits gained by the researcher who
collects the stories. They bring into question the notion that research data,
once collected, belongs to the researcher and their institution.
In an attempt to resolve the concerns of the group on the Thai – Burma
border, a lengthy negotiation was undertaken. The women consented to par-
ticipate if the researchers provided them with training and project support in
return for research data. The women also required that a very strong ethics
agreement be put in place which gave them control of the materials collected.
The researchers could only use these in reports, articles, multimedia pro-
duction and so on, following sign-off by the refugee groups. This entails
sending all materials back to the researched community or their designated
representatives for approval before release. This of course has significant
time, resource, and capacity implications for the researchers who undertake
this research methodology.
This particular group had a very clear agenda they wanted to pursue.
Refugee communities on the Thai–Burma border come from a number of dis-
tinct ethnic groups. One group, the Shan Women’s Action Network (SWAN),
had recently released a publication titled Licence to Rape in which they
recorded the systematic and brutal rape of Shan Women by the Burmese mili-
tary (SWAN, 2002). It is a very powerful book and received significant inter-
national attention. The women were using it as an advocacy tool and hoped to
achieve enhanced international protection for the Shan women through its
wide dissemination. Other women’s groups from Burma had similar stories
and they also expressed an interest in documenting these and using similar
advocacy strategies to bring about change in their circumstances. Following
discussion, the women decided that what they needed most of all was training
to prepare their evidence in a format suitable for presentation at a series of
NGO and UN meetings to lobby for political change and to advocate for
badly needed services for their communities. An agreement was reached
between the researchers and the groups for the training, which would incor-
porate gathering data about and analysis of human rights abuses. Once the
refugee groups had launched their own reports, the researchers would have
access to all the research data. In addition, all data collected as part of the
training and incorporated into reports by the researchers could be used once
signed off by the refugee groups concerned. Strict ethical agreements, over and
above the University of New South Wales (UNSW) Ethics Committee require-
ments, and on a letterhead decided by the groups themselves, were drawn up
with the groups to enforce these principles. The new training involved human
rights documentation techniques and formal report presentation. The refugees
were assisted by a team of Masters students from the Centre for Refugee
Research, and subsequently produced three major reports which were launched
at UN fora including the Human Rights Council in Geneva.

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This process spurred the building of a methodology which uses a human

rights framework and participatory action research principles to work with
refugee groups in a way which is respectful of their autonomy, agency
and capacity, and seeks to address the issues detailed above. The knowledge
and the stories stay in the possession of the groups with whom we work.
The outputs are most often determined by the participants. This can
cause yet more challenges to the researchers. On one occasion, political ten-
sions were so high in one refugee site that the refugees requested that we
withhold our report, releasing it only to UNHCR. This was done, with good
research impact, including increased service provision for the groups con-
cerned, but we have not been able to publish more widely about the work
that we undertook. On another occasion when we went to a site with an
understanding that the focus of the consultation would be on the occurrence
of domestic violence, the groups decided that they needed to focus on
livelihoods. After a speedy reorganization of training materials, a very suc-
cessful consultation was undertaken. One outcome was the design of a
number of livelihoods programmes and funding applications submitted.
These examples demonstrate that it is possible to be ethically sensitive and
strategically effective, but that this can come at a cost to the researchers’
expected outputs.
We have named the method ‘reciprocal research’, and it has proved suc-
cessful in gathering verifiable data and evidence of human rights abuses in
many countries, and in enabling refugee groups to be active participants in
the process of seeking redress and service provision.
I have not drawn these people like this because I cannot draw – I have
drawn them like this because there is not enough food any more – we
are all getting thinner and thinner, like sticks. (Refugee woman from
Sudan, Ethiopia, 2005)
The development of the methodology has been an iterative process and
it continues to evolve as we respond to different needs and deepen our
analysis of the process (Mackenzie et al., 2007; Pittaway and Bartolomei,
2009b). It also began an exceptionally successful and ongoing collabor-
ation between the UNSW Centre for Refugee Research (the Centre) and
these (refugee) groups. Through word of mouth, information about the

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consultations and the research impacts have spread through the commu-
nity of refugees from Burma, and the Centre regularly conducts training
and research at the invitation of refugee groups in Thailand and India.
The methodology has also been used with refugees in African countries,
in Bangladesh, and in three states in Australia. Following the 2004 Asian
tsunami, we were requested to work in Sri Lanka using the methodology
to work with displaced women and children who were experiencing
sexual abuse (Pittaway et al., 2007).

Reciprocal Research through Community Consultation and Training

Reciprocal research is a ‘step-by-step’ process that starts with the pro-
vision of human rights training. It takes a minimum of four days working
with communities and with the ideal duration of six days. The process
involves using a human rights framework to set a context for discussion
and to identify human rights abuses experienced by the participants.
Next, the concept of ‘stories as evidence’ is introduced using a technique
called ‘story circles’ in which participants are invited to share stories of
particular issues positioned within the human rights framework. The
stories yield a large amount of rich data on the type of problems being
experienced and the impact of these on individuals, families, and
communities.
Situational analysis and response mechanisms are developed by the
participants through the use of ‘storyboards’. Participants produce a
series of drawings to conduct situational analysis including proposals
for action, response and interventions. The storyboard technique
allows participants to name problems and issues within their commu-
nities in a positive and empowering context. The technique recognizes
the skills, knowledge and experience that participants bring to situ-
ations, and provides a human rights framework which acknowledges
their rights to a secure life and social support. Interviews can be
undertaken to further explore themes which emerge from the analysis
of the documentation.
The final stage of the methodology is strategic planning. This step
seeks to address at least some of the issues involved, and plan a pro-
gramme of advocacy for action. Whenever possible, all key stakeholders
are involved in this final stage. Critical to the entire process is an ethical
‘confidentiality agreement’, in which the researchers ensure that all the
materials collected remain the property of the participants and can only
be used with the participants’ permission. An ethical framework based
on, but often expanding, the UNSW Ethics Agreement is negotiated with
participants (Pittaway and Bartolomei, 2009a, 2009b; http://www.crr.
unsw.edu.au).

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 240

In every instance, the Centre has a greater demand for participants to take
part than we have the capacity to respond to. The opportunity to participate
in training sessions and in problem solving has proved to be an attractive
proposition for refugees. We are often told that this is the first time that they
feel that researchers have really ‘listened’ to them, and have asked for their
ideas about solutions as well as documenting the problems. NGOs and UN
agencies have commissioned training in the methodology. Initial fears that
refugees from professional backgrounds and with university degrees would
not wish to participate in activities which employed techniques such as
drawing were soon dispelled. For example, a group of professional Iraqi men
who have been resettled in Melbourne participated in a four-day long con-
sultation in 2009. The session started with a discussion about whether there
was a saying in Arabic similar to the English expression ‘a picture is worth a
thousand words’. Once the purpose of the technique was explained, the men
wholeheartedly endorsed it and their invaluable input can be seen in the
report of the consultations, which has triggered significant change in service
provision (Doney et al., 2009).
The fact that the field trips combine training and consultation/research
removes the focus from the traditional gatekeepers who are seen as ‘guar-
dians of community knowledge’ and broadens the pool of people who par-
ticipate. Women are allowed to participate in training on gender issues and
counselling where they may be excluded from other forms of research pro-
cesses. This is not to suggest that the consultation is done covertly. The pro-
posed process is shared with the community including the leaders, usually by
the showing of DVDs of previous consultations. They then decide if they
want to participate or not. In one site where we had accepted an invitation
from a community-based organization to work with 40 participants over a
week, on the first day 122 people turned up, some having walked eight
hours over a mountain from a neighbouring camp. The training consultation
took place with all participants and yielded excellent results. There were sig-
nificant changes in camp service provision after the recommendations from
the refugee groups were presented to the NGOs and UNHCR. Once the
process is understood by the communities, people self-select to participate.
While originally designed for working with women and girls, it was at the
request of male community leaders that we began to use the methodology
with mixed groups and with men and boys.
Theoretical Foundations for an Ethical Research Framework
The challenges of working with refugees, IDPs, and other vulnerable popu-
lations are multi-faceted and cannot simply be addressed by the development
of a research methodology. The particular challenge posed to the researchers
was to develop an ethical framework for research undertaken with vulner-
able groups. Their concerns mirrored the focus of this special edition, and

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became a driver for all of the research which they subsequently undertook.
The work we have undertaken in developing a methodology for working
with these populations aimed to explore and address some of the many
ethical dilemmas for researchers, such as those outlined above. It also
focused our thinking about the theoretical and ideological frameworks in
which we situate our work and challenged us to examine our own practice.
In a current three-year project, authors Pittaway and Bartolomei, with
Rebecca Eckert, are conducting research with refugee women resettled in
Australia while author Hugman is monitoring the process to evaluate the
way in which the ethical framework is applied. This process involves examin-
ing and at times challenging the organizational ethics procedure to ensure
that it is adequate to the needs of very vulnerable groups and non-traditional
research methodologies. Similar work has been done by researchers working
with indigenous communities in Australia (Gorman and Toombs, 2009).
It was apparent from concerns voiced by the refugee groups that resolving
ethical dilemmas has the potential to enhance the work of a range of aca-
demic disciplines in the social sciences, health and legal fields, as well as to
aid service providers, social policy makers, and social development and other
applied and professional disciplines. In order to do this it was necessary to
engage with and reflect the perceptions of three key stakeholder groups: the
‘researched’ communities, researchers in the relevant fields, and the academic
and professional bodies that have ethical oversight of such research practice.
The aims of our ongoing work are to:
† establish a detailed theoretical analysis of the values and principles that
are used to guide research in complex cross-cultural refugee and IDP
contexts;
† identify and refine practical and innovative methodological solutions,
involving reciprocal benefit for refugee and IDP communities as well as
supporting rigour in research practice;
† develop and evaluate an ethical approach for research with refugees and
IDPs that can guide and support good research practice, including
methods for ensuring that researchers are better equipped to engage ethi-
cally with these vulnerable communities.
These aims are informed by the work of Hugman in applied ethics (2003,
2005, 2008), which explores the implications of new approaches in ethical
theory for the practices of social work and service delivery, including social
development and the health professions. This work is relevant also to the
practice of social policy. It emphasizes that ethics is not simply a matter of
following rules and procedures, as is often the focus of research ethics, but
should inform all aspects of the discursive interactions between people. The
significance for research with refugee and IDP communities is that ethics
cannot be limited to fulfilling the formal requirements of sponsoring insti-
tutions. Nor can it be confined to notions of ‘do no harm’. Ethics should be

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 242

extended to promoting the interests and well-being of extremely vulnerable

research subjects, in ways that make sense for the research subjects, as well
as for researchers and their academic institutions and professional bodies.
Thus it promotes an ethical understanding of subjects as participants in and
beneficiaries of such research.
It cannot be assumed that research participants necessarily share a
common understanding of the purpose of research, the role of the academic
and the academy, notions of consent, forms of engagement (and recruit-
ment), or communication and perceptions of risks (Pittaway and Bartolomei,
2005). Notions of moral obligations, in this case between the researcher and
researched, differ markedly from culture to culture (Hugman, 2008) and are
further mediated in the context of asylum seeking, legal procedures and the
migration experience (Reed, 2002). Cross-cultural communication on
matters of ethics is difficult and makes additional demands on researchers.
Language-use and the ability to communicate ethical information about the
research process and outcomes are vitally important (Tesch, 1990).
Researchers should, therefore, be familiar with the ethical frameworks rel-
evant to their work and understand how these may be similar to or different
from those of participants, so that they are capable of working cross-
culturally with extremely vulnerable communities in ways that make sense in
terms of participants’ own values. At the same time, researchers also have a
responsibility to their institutions, to respect their normative ethical stan-
dards and to comply with their procedures where these are reasonable and
constructive.
Cultural sensitivity in the research process does not equate with ethical
relativism, in which any attempt at finding common moral ground is seen as
pointless, but rather it leads us to an understanding of the plurality of values
in which dialogue is possible (Hinman, 2003; Beauchamp and Childress,
2001). What is required, and is provided by an ethical pluralist approach, is
a framework for being able to make use of the common connections of
human values, such as honesty, respect, privacy and so on, so that the
researcher is able to negotiate processes and outcomes that both protect and
promote the interests of participants and ensure that methodological rigour
can be maintained. It is respect for these fundamental human values which
facilitate cross-cultural dialogue. A more ethically pluralist and discursive
approach has the potential to encourage researchers and their sponsoring
institutions to consider research practice in a much broader cross-cultural
way, emphasizing reciprocity in relationships. This is precisely because such
an approach seeks to recognize the commonalities and differences of interest
and values between researchers and participants/subjects, and to find ways
of responding to these in the research process. In turn, this points to an
expanded view of research ethics, in which concepts such as ‘do no harm’
must be accompanied by a more positive value of seeking to identify and
pursue good outcomes for participants.

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 243 The Ethics of Research with Vulnerable Groups

A Participatory Approach – Integrating Human Rights and Social Work

Practice

The proposed [human rights-based] approach, in line with this would

transform beggars into claimants. Claimants have their dignity and
strength derived from these entitlements. They have a position from
which to negotiate. (Frankovits, 1996: 123 – 128)

The human rights framework is core to the work of the research team.
Components of this framework are understood to include justice, recog-
nition, self-determination, voice and agency in addressing all forms of
oppression. This is articulated by Ife (2008) as ‘human rights from below’, in
which the notion of rights is not just regarded as a legal framework but a
moral framework which must underpin community development practice.
Participation in research has a strong community development component. It
has the potential to empower refugees and IDPs and build capacity, resilience
and agency through enhancing the skill base of some participants, providing
access to services, offering new contacts and facilitating their voices being
heard (Reason and Bradbury, 2006). While participation is fundamental to a
rights-based approach, a number of recent critiques by key development
actors point more to the rhetoric of participation than its reality (Cornwall
and Brock, 2005; Slim, 2001). For this reason, in the development and
implementation of a genuinely rights-based practice, the form that partici-
pation takes is key. If the affected communities are not actively participating
in identifying rights violations and solutions, then it is not a rights-based
approach.
In the course of our work with refugee communities and as lecturers in a
Masters course on International Social Development, the authors are fre-
quently challenged about the value of teaching human rights to refugees who
live in abject poverty, often with only marginal access to their most basic
needs. They are often not legally registered in the countries which host them
and have no security of tenure. We have been accused of raising false expec-
tations and setting unreachable goals by introducing these concepts. It has
been said that the discourse is too difficult for pre-literate people to fully
understand. It is sometimes argued that because human rights is a contested
discourse, with many host states neither respecting nor ratifying either the
Refugee Convention or other human rights conventions, this can lead to mis-
understandings and conflict. While being fully cognizant of the risks, we
argue that it is a lack of information and misinformation about rights which
causes greater risk.
Sally Engle Merry (2001: 94) has argued that ‘In many ways human rights
represents a discourse available for framing problems rather than a system of
law for preventing them’. Human rights provide an ‘agenda setting frame-
work’, not just for binding international law but for policy and social norms

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 244

(Risse and Sikkink, 1999). Many writers have suggested that a key challenge
for the human rights community is to develop a culturally resonant approach
to the articulation of human rights (An-N’aim, 1999; Dominelli, 2002a).
Lena Dominelli (2007: 24) states that ‘it is useful to envisage the [Universal
Declaration of Human Rights] provisions as contingent on context, as the
social environment and the people involved in any interaction create its
meaning’.
We have to make the human rights framework relevant and accessible
to the communities with whom we work. The answer is not to withhold
‘rights knowledge’ from refugees, but to ensure that we discuss both the
advantages and the limitations of the approach and framework with the
communities. Effective training and consultation provide sufficient infor-
mation to enable refugees to make informed choices about what they wish
to do and acknowledge their agency and ability to do this responsibly.
For both the affected populations and as advocates, it is more effective to
lobby from an informed position as legal and moral claimants, than as
supplicants. The result of over 30 consultations has made us increasingly
confident that this is the case.
In 2007 the authors were commissioned by UNHCR Geneva to conduct
community consultations with refugees from Burma residing in Bangladesh,
in what has been described as one of the worst refugee camps in the world.
Child prostitution was sponsored in the camp by a local crime ring, women
and girls were trafficked to local towns, rations were stolen, malnutrition
was rife, and men who tried to protect their families were beaten and impri-
soned in horrific circumstances on false charges. UNHCR staff had come
from Geneva, Dhaka and the local UNHCR office to observe and participate
in the process (UNHCR, 2007). The consultations began with human rights
training, which included the making of a ‘human rights necklace’, in which
different coloured beads represent different groups of rights. The necklace is
used to symbolize the indivisibility, inalienability and the universality of
human rights.
At the end of the consultations, representatives from the groups were
selected by the community to present their storyboards and analysis to
UNHCR staff and local NGOs. An older, pre-literate woman was elected by
one group to make their presentation, and she had agreed with the group
about which storyboards she would use and what she would say in her allo-
cated time. On the morning of the presentation, she stood before the senior
and local UNHCR staff in her torn and dusty burka. Instead of starting with
the storyboards as expected, she pointed out that over her burka she was in
fact wearing a necklace, as were all of the other women seated on the low
bench around her. Talking with great dignity, this is what she said to the
assembled UNHCR staff, NGOs, and service providers:

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 245 The Ethics of Research with Vulnerable Groups

Do you see my necklace? It is a human rights necklace. Every bead rep-

resents the rights that we have as human beings. Many years ago in
Burma, we all wore these necklaces, men and women, and we were proud
of them. We lived happy lives and enjoyed our human rights. Then we
were persecuted by the SPDC [the State Peace and Development Council,
the military regime in Burma], we lost everything; we were forced to flee
for our lives. We came here and the abuses continued. We are starving,
and beaten, the children are in danger. This is what has happened.

At this point she stopped talking and took hold of her necklace and pulled it
so hard that the beads fell and scattered all over the floor. She continued:

Our necklaces were broken, our rights were scattered, and we lost them
all. Now UNHCR, we ask you to help us to pick up all of those beads.
We want our rights. We want our necklaces back. Once again, we want
to wear them with pride.

The woman then waited for a moment and proceeded to present the story-
boards and analysis as planned.
The impact was immense, the meaning unmistakable. The human rights
framework does indeed turn beggars into claimants. There have been other
stories since then, but this is the most simple and most powerful endorsement
of using the human rights framework we have. It empowers people to claim
their rights, provides a framework for analysis and for the identification and
implementation of strategies to address some of the worst abuses endured by
refugee communities. Following the consultation UNHCR made the two
camps involved priority areas for assistance. They worked with the govern-
ment of Bangladesh to begin to address the corruption in the camp. The
Australian government paid for the construction of new accommodation and
the EU paid for lighting in the camp to improve safety for the refugees
visiting latrines at night. Five nations opened programmes of resettlement
from the camps, targeting the most vulnerable refugees, and livelihood pro-
grammes were introduced. Children were allowed to attend secondary school
and food rations improved. While there are still significant problems in the
camps, major steps were taken following the research project and at least
some of the human rights abuses were addressed.
In sum, the philosophical notions of universality, indivisibility and inalien-
ability of human rights enshrined in the Universal Declaration of Human
Rights (UN, 1948) forms the epistemological umbrella for the reciprocal
research methodology. We understand and work with human rights as broad
principles of empowerment, rather than legal standards for enforcement.
Social work ethics offer some important insights to the research process in
such circumstances. The international statement on social work ethics
includes human rights and social justice as primary values (IFSW/IASSW,
2004). Discussions of ethics in social work research (for example, see Butler,

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 246

2002) make strong connections between these values and methodologies that
recognize and respond to the autonomy and agency of those who participate
in research. In turn, this often finds its most concrete expression in an
approach that creates opportunities for participatory research practice, in
which participants are genuinely subjects beyond the giving of informed
consent (Hugman, 2010). This approach allows for the identification of uni-
versal structural oppressions, including those on the grounds of race, gender,
and social and economic status, while considering the impacts of individual
circumstances and identities. It provides a theoretical framework which sup-
ports an investigation of the manner in which structural oppressions and
individuals’ identities intersect to either increase or decrease the impacts of
human rights abuses and oppressions. It enables a critique which combines a
critical/structural analysis of the root causes of oppression with individual
circumstances (Bartolomei, 2010).
This approach is informed by the principles articulated in anti-oppressive,
decolonizing and antiracist approaches to social work and community devel-
opment practice (Dominelli, 1998, 2002a, 2002b; Ife and Tesoriero, 2006;
Quinn, 2003). These urge a reflexive approach to social work practice invol-
ving a constant revaluation of the workers’ own power and perspectives,
knowledge, and skills, to challenge racism, nurture emancipation and to
work with cultural and linguistic difference (Dominelli, 2002a, 2002b;
Quinn, 2003). Approaches to individual and community empowerment are
underpinned by understandings that this is not something ‘done to’ individ-
uals or communities, but that instead the role of the social worker is to work
with communities to create the environmental and social conditions that
build community capacities and enable self-determination to grow and flour-
ish (Ife and Tesoriero, 2006; Kenny, 2006; Westoby, 2008).
Critical theorists working in this tradition stress the importance of agency,
the capacity of people to actively engage in challenging social structures in
order to bring about emancipation and social change (Pease et al., 2003;
Ngwenyama in Boudreau, 1997). Critical approaches have been employed
by a range of social theorists concerned with understanding, exploring and
challenging the impacts of oppressive social, political and ideological struc-
tures on people’s lives. In this case we would argue that some forms of
research constitute an additional layer of oppression.
This critical social work approach is further enriched by Lena Dominelli’s
body of work on anti-oppressive social work practice (1998, 2002a, 2002b)
and Jim Ife’s (2001, 2008) and Elizabeth Reichert’s (2001, 2003, 2007)
work on human rights and social work. It is an approach directly informed
by both human rights and anti-oppressive social work to expose ‘unjust
polices and practices’, to ‘promote institutional and organizational change’
and to advocate for ‘non-oppressive alternatives’ (Dominelli, 2002a: 35).
Based on these principles, the focus of the method we have developed is
the collection of information from often vulnerable populations in a way

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 247 The Ethics of Research with Vulnerable Groups

that is empowering, not harmful or exploitative, and which has the potential
for bringing about social change. It is ideal for use with marginalized and
disadvantaged groups who have valid and historically based reasons for dis-
trusting people in authority, including researchers, academics, and represen-
tatives of governments and other institutions. This might include people who
experience discrimination on the basis of class, race, gender, and disability
and refugee status. The reciprocal nature of the method transforms people
from subjects of research to participants in research, moves from ‘harm mini-
mization’ as an ethical base to reciprocal benefit, and from researcher
directed projects and outcomes to participant and community directed out-
comes (Pittaway and Bartolomei, 2009b).
Conclusion
Poorly designed and implemented research produces bad policy and practice
with inadequate protection outcomes for refugees and IDPs. There are many
problems, including mismatches of expectations, misleading processes for
gaining consent, risks posed by the use of information and the treatment of
human subjects as data rather than as moral agents. While it is entirely
plausible that much of this is unintended, in practical terms ethical inadequa-
cies lead to the ill-treatment of extremely vulnerable individuals and groups
as a means to achieve research ends, which breaches the basic principles of
accepted research ethics (Hugman, 2005; Reed, 2002; Beauchamp and
Childress, 2001). Thus, guidance is needed in a range of areas, including the
roles and responsibilities of researchers and sponsoring institutions, the com-
plexities of achieving meaningful informed consent, the representativeness of
‘community leaders’ facilitating research on behalf of refugee and IDP popu-
lations, and finally, ethical issues that arise in the publication or dissemina-
tion of research findings.
The ethical issues raised by refugee and IDP research are of crucial
importance to three distinct but interdependent groups: refugee and IDP
communities who participate in research; researchers and the agencies that
commission research; and institutional ethics committees. More often than
not, these groups work theoretically and conceptually independently from
each other and have different interests in the research process. Refugees and
IDPs are seldom consulted about the methods of research or about the
impact of research on individuals and communities. Researchers are seldom
given an opportunity to discuss the relationship between ethical issues and
the practical challenges that they face in the field. Sponsoring institutions
may be regarded as taking a policing and organizational risk management
role rather than a supportive role in enabling researchers to address the
ethical issues arising from their work.
To address these issues, we suggest that we need a new theoretical frame-
work for research with refugee and IDP populations that draws on both
human rights and social work. This new framework would be based on a

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 Eileen Pittaway, Linda Bartolomei and Richard Hugman 248

detailed theoretical analysis of the values and principles that should guide
ethical research in complex cross-cultural contexts, and be informed by the
relevant literatures in theoretical and applied ethics, human rights, social
work and community development. The new framework will draw on rela-
tional approaches to autonomy and agency (Hugman, 2005; Mackenzie
et al., 2007). It will propose a shift in approaches to research ethics with
refugee and IDP populations, moving beyond the dominant principles of
harm minimization to an emphasis on negotiated reciprocal benefit that chal-
lenges researchers to justify their projects with reference to the benefits deliv-
ered to the vulnerable groups themselves. Such a framework would enable
refugee and IDP studies to progress beyond its current discussion of ethical
challenges to develop practical solutions.
While we have suggested one model of working to achieve these aims, we
propose that additional ethical research models for use with refugee and IDP
populations which are both academically rigorous and incorporate a recipro-
cal benefit for the population involved could be developed by scholars in the
field and shared with colleagues.

Acknowledgements
Thanks to Rebecca Eckert, Geraldine Doney, Effie Mitchell and Carole Shaw
for their input into the development of this methodology.

References
Allotey, P. and Manderson, L. 2003. ‘From Case Studies to Case Work: Ethics and
Obligations to Refugee Women in the Field’. In: P. Allotey (ed.) The Health of
Refugees: Public Health Perspectives from Crisis to Settlement. Melbourne: Oxford
University Press: 200 –211.
An-N’aim, A. 1999. ‘The Cultural Mediation of Human Rights: The Al-Arquam
Case in Malaysia’. In: J. Baur, and D. Bell (eds). The East Asian Challenge for
Human Rights. Cambridge University Press: 56–70.
Bartolomei, L. 2010. ‘Struggling Against the Silences: Exploring Rights Based
Responses to the Rape of Refugee Women and Girls’. Ph.D. Thesis, UNSW.
Beauchamp, T.J. and Childress, J.F. 2001. Principles of Biomedical Ethics. 5th ed.
Oxford University Press.
Boudreau, M.C. 1997. Report on the Discussion at the Panel on Assessing Critical
Social Theory Research in Information Systems. Working Conference in
Philadelphia May 31 – June 3, 1997. http://www.people.vcu.edu/~aslee/
Philadelphia-CST.htm (referenced 23 October 2009).
Butler, I. 2002. ‘A Code of Ethics for Social Work and Social Care Research’. British
Journal of Social Work, 32 (2): 239 –248.
Cornwall, A. and Brock, K. 2005. ‘Beyond Buzzwords: “Poverty Reduction”,
“Participation” and “Empowerment” in Development Policy’. Overarching
Concerns Programme Paper No. 10. UN Research Institute for Social
Development. http://www.equalinrights.org (referenced 10 September 2008).

Downloaded from https://academic.oup.com/jhrp/article-abstract/2/2/229/2188714

by guest
on 20 April 2018
 249 The Ethics of Research with Vulnerable Groups

Dominelli, L. 1998. ‘Anti-Oppressive Practice in Context’. In: R. Adams,

L. Dominelli, and M. Payne (eds). Themes, Issues and Critical Debates.
Hampshire: Macmillan Press: 250– 269.
———. 2002a. Anti-Oppressive Social Work Theory and Practice. Basingstoke:
Palgrave Macmillan.
———. 2002b. Feminist Social Work Theory and Practice. Basingstoke: Palgrave
Macmillan.
———. 2007. ‘Human Rights in Social Work Practice: An Invisible Part of the Social
Work Curriculum?’ In: E. Reichert (ed.) Challenges in Human Rights: A Social
Work Perspective. New York: Columbia University Press: 16–43.
Doney, G., Pittaway, E., and Vu, V. 2009. ‘Unsung Heroes: An Evaluation of the
AMES Community Guides Program’. AMES Victoria.
Ebbs, C.A. 1996. ‘Qualitative Research Inquiry: Issues of Power and Ethics’.
Education 117 (2): 217–222.
Forced Migration and Refugee Studies Program (FMRS). 2003. ‘Refugees in Urban
Settings: Methods and Ethics’. Research Report. Cairo: The American University.
Frankovits, A. 1996. ‘Rejoinder: The Rights Way to Development’. Food Policy, 21
(1): 123 –128.
Gorman, D. and Toombs, M. 2009. ‘Matching Research Methodology with Australian
Aboriginal Culture’. Aboriginal and Islander Health Worker Journal, 33 (3): 4–7.
Guijt, I. and Shah, M.K. 1998. ‘Waking Up to Power, Conflict and Process’. In:
I. Guijt, and M.K. Shah (eds). The Myth of Community: Gender Issues in
Participatory Development. New Delhi: Vistaar Publications: 1– 23.
Hinman, L. 2003. Ethics: A Pluralistic Approach to Moral Theory. 3rd ed. Belmont:
Thomson/Wadsworth.
Hugman, R. 2003. ‘Professional Ethics and Values in Social Work: Reconsidering
Postmodernism?’ British Journal of Social Work, 33 (8): 1025– 1041.
———. 2005. New Approaches in Ethics for the Caring Professions. Basingstoke:
Palgrave Macmillan.
———. 2008. ‘Ethics in a World of Difference’. Ethics and Social Welfare, 2 (2):
118 –132.
———. 2010. ‘Social Work Research and Ethics’. In: I. Shaw, K. Briar-Lawson,
J. Orme, and R. Ruckdeschel (eds). The Sage Handbook of Social Work Research.
Los Angeles/London: Sage Publications: Chapter 9, 149 –163.
Hyndman, J. 2000. Managing Displacement: Refugees and the Politics of
Humanitarianism. Minneapolis: University of Minnesota Press.
Ife, J. 2001. Human Rights and Social Work. Towards Rights-Based Practice. 1st ed.
Cambridge University Press.
———. 2008. Human Rights and Social Work. Towards Rights-Based Practice. 2nd
ed. Cambridge University Press.
Ife, J. and Tesoriero, F. 2006. Community Development: Community-Based
Alternatives in an Age of Globalization. 3rd ed. Frenchs Forest, NSW: Pearson
Education.

Downloaded from https://academic.oup.com/jhrp/article-abstract/2/2/229/2188714

by guest
on 20 April 2018
 Eileen Pittaway, Linda Bartolomei and Richard Hugman 250

International Federation of Social Workers/International Association of Schools of

Social Work (IFSW/IASSW). 2004. Ethics in Social Work: Statement of Principles.
Berne: IFSW/IASSW.
Jacobsen, K. and Landau, L. 2003. ‘Researching Refugees: Some Methodological and
Ethical Considerations in Social Science and Forced Migration’. New Issues in
Refugee Research, Working Paper No. 90. Geneva: UNHCR Evaluation and Policy
Analysis Unit.
Karen Women’s Organization. 2004. ‘Shattering Silences: Karen Women Speak Out
about the Burmese Military’s Use of Rape as a Strategy of War in Karen State’.
Report launched at UN Economic and Social Commission for Asia and the Pacific
(ESCAP).
Kenny, S. 2006. Developing Communities for the Future. 3rd ed. Melbourne:
Thomson.
Leaning, J. 2001. ‘Ethics of Research in Refugee Populations’. The Lancet, 357:
1432–1433.
Mackenzie, C., McDowell, C., and Pittaway, E. 2007. ‘Beyond “Do No Harm”: The
Challenge of Constructing Ethical Relationships in Refugee Research’. Journal of
Refugee Studies, 20 (2): 299– 319.
Merry, S.E. 2001. ‘Women, Violence, and the Human Rights System’. In: M. Agosin
(ed.) Women, Gender, and Human Rights: A Global Perspective. Piscataway:
Rutgers University Press: 83–97.
Pease, B., Allan, J. and Briskman, L. 2003. ‘Introducing Critical Theories in Social
Work’. In: J. Allan, B. Pease, and L. Briskman (eds). Critical Social Work: an
introduction to theories and practices, Australia: Allen & Unwin: 1 –14.
Pittaway, E. and Bartolomei, L. 2003. ‘Women at Risk Field Research Report:
Thailand 2003’. Sydney: Centre for Refugee Research.
———. 2005. ‘Field Research Reports: Kakuma, Kenya, Sri Lanka, Ethiopia and the
Thai –Burma Border’. Sydney: Centre for Refugee Research.
———. 2009a. ‘Innovations in Research with Refugee Communities’. Refugee
Transitions, No. 21. NSW Service for the Treatment and Rehabilitation of
Torture and Trauma Survivors (STARTTS). http://www.startts.org.au/default.
aspx?id=411 (referenced 6 May 2010).
———. 2009b. ‘Reciprocal Research: Aiming for Empowerment Not Exploitation’.
Paper presented at ‘Migration Methodologies: Researching Asia’ held at National
University of Singapore (NUS), Seminar Room Auditorium, 8–9 March 2010.
Pittaway, E., Rees, S., and Bartolomei, L. 2007. ‘Gendered Dimensions of the 2004
Tsunami and a Potential Social Work Response’. International Social Work,
50 (3): 307– 319.
Quinn, M. 2003. ‘Immigrants and Refugees: Towards Anti-Racist and Culturally
Affirming Practices’. In: J. Allan, B. Pease, and L. Briskman (eds). Critical Social
Work. NSW: Allen & Unwin: Chapter 5, 75–91.
Reason, P. and Bradbury, H. 2006. Handbook of Action Research. London: Sage
Publications.
Reed, H. 2002. Research Ethics in Complex Humanitarian Emergencies: Summary of
a Workshop. National Research Council Roundtable on the Demography of

Downloaded from https://academic.oup.com/jhrp/article-abstract/2/2/229/2188714

by guest
on 20 April 2018
 251 The Ethics of Research with Vulnerable Groups

Forced Migration, Committee on Population. Washington: National Academy

Press.
Reichert, E. 2001. ‘Placing Human Rights at the Centre of the Social Work
Profession’. Journal of Intergroup Relations, 28 (1): 43–50.
———. 2003. Social Work and Human Rights: A Foundation for Policy and
Practice. New York: Columbia University Press.
———. 2007. Challenges in Human Rights: A Social Work Perspective. New York:
Columbia University Press.
Risse, T. and Sikkink, K. 1999. ‘The Socialization of International Human Rights
Norms into Domestic Practices’. In: T. Risse, S. Ropp, and K. Sikkink (eds). The
Power of Human Rights. International Norms and Domestic Change. Cambridge
University Press: 1 –38.
Shan Women’s Action Network (SWAN). 2002. Licence to Rape. http://www.
shanwomen.org/pdf/Licence%20to%20Rape%20B.pdf (referenced 14 October
2009).
Slim, H. 2001. Not Philanthropy But Rights: Rights-Based Humanitarianism and the
Proper Politicisation of Humanitarian Philosophy in War. Centre for Development
and Emergency Practice, Oxford Brookes University.
Tesch, R. 1990. Qualitative Research: Analysis Types and Software Tools. London:
Routledge.
United Nations (UN). 1948. Universal Declaration of Human Rights. http://www.un.
org/en/documents/udhr (referenced 10 June 2008).
UN High Commissioner for Refugees (UNHCR). 2007. Refugee Consultations:
Bangladesh. http://www.unhcr.org/refworld/docid/46f0ec002.html (referenced
15 March 2010).
———. 2009. Refugees, Asylum-Seekers, Internally Displaced Persons (IDPs),
Returnees (Refugees and IDPs), Stateless Persons, and Others of Concern to
UNHCR by Country/Territory of Asylum, end-2008: Table 1. http://www.unhcr.
org/pages/4a0174156.html (referenced 15 March 2010).
Westoby, P. 2008. ‘Developing a Community-Development Approach through
Engaging Resettling Southern Sudanese Refugees within Australia’. Journal of
Community Development, 43: 483 –495.

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