Tackling Ethical Challenges in Community-based Participatory Research
Durham University, 28th February 2013
PROJECT OUTLINES FOR WORKSHOPS
CONTENTS
WORKSHOPS 1: 12.00 – 13.00
PAGE
1A Ethical issues in participatory health research, MAIN CONFERENCE ROOM
Participation in participatory health research: legislation, bureaucracy and access
2
1B Ethical issues in participatory museum and heritage research, OLD LIBRARY
Ethical issues in participatory museum and heritage research: Ownership and informed
consent in perpetuity
4
1C Ethical issues in participatory science research, PENNINGTON ROOM
Turing's Sunflowers
5
Catalyst - Citizens Transforming Society Tools for Change!
7
WORKSHOPS 2: 14.00 – 15.00
2A Ethical issues in participatory arts and cultural research, MAIN CONFERENCE ROOM
Arts-based biographical research: women, well-being and community
10
Fulfilling Lives? Ethical Issues in participatory research exploring the use of leisure time by
people with learning disabilities
12
2B Ethical issues in participatory research for social justice, OLD LIBRARY
The use and potential of science education centres for tobacco control – work with young
activists (W-West)
13
In whose interest? Ethical challenges in a collaborative action research project on high cost
credit with households experiencing poverty
14
2C Ethical issues in participatory environmental research, PENNINGTON ROOM
Keeping it fluid: participatory ethics in river management research
17
Permaculture, co-production and ethics in participatory research
18
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Tackling Ethical Challenges in Community-based Participatory Research
Durham University, 28th February 2013
Workshop 1A: Ethical issues in participatory health research
Participation in participatory health research: legislation, bureaucracy and
access
Contacts: Tina Cook ([email protected])and Helen Atkin
([email protected]) Northumbria University); Nicola Armstrong
([email protected]) Northumberland Tyne and Wear NHS Foundation Trust and Andrew
Stafford ([email protected]) Lawnmowers Independent Theatre Company
1. Description of the projects: This workshop will draw on the experience of three research
projects:
1. Understanding research, consent and ethics: a participatory research methodology in a medium
secure unit for men with a learning disability. Funder: Department of Health National
Programme on Forensic Mental Health Research and Development. The aim was to work with
men with learning disability to ascertain what they understood about research and participation
in research, to work collaboratively to develop understandings of how their knowledge could be
enhanced, and to design a set of principles for informed participation in research for people with
learning disability. (For more information see: Cook, T. and Inglis, P. (2012) Participatory
research with men with learning disability: informed consent, Tizard Learning Disability Review,
17 (2): 92 – 101)
2. Towards Inclusive Living: A case study of the impact of inclusive practice in Neuro
Rehabilitation/Neuro Psychiatry Services. Funder: Department of Health Policy Research
Programme: Long Term Conditions. This project identified current perceptions of services for
people with long term neurological conditions, investigated understandings of inclusive practice,
articulated the impact of current forms of inclusive practice on the lives of service users and
identified enablers and barriers to inclusive practice. (For more information see:
http://www.ltnc.org.uk/Research%20pages/impact_inclusive.html)
3. Is there a pathway to recovery through care-co-ordination? Funder: National Institute Health
Research, Research for Patient Benefit. This study is currently exploring whether there is a
pathway to mental health recovery through care coordination. Through capturing the
experiences of service users, carers and staff, this study aims to explore how care coordination is
delivered and gain a consensus of best practice. Ultimately it will produce an archive of
narratives of both recovery and care coordination and present a best practice care coordination
toolkit.
All three projects involved working with people who have experience of the topic that is the focus of
the study, to develop a participatory approach to researching that topic. Project one was as action
research project where, as the men developed their understandings, they gradually began to take
control of and design the approach to the learning opportunities. Project two started from a
question asked by service users. It took a participatory approach where people with experience
were involved in designing the shape of the research, generating and analysing the data and
disseminating the learning. This was facilitated through academic researchers. The third project
took a similar approach.
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Tackling Ethical Challenges in Community-based Participatory Research
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2. Ethical issues anticipated in the projects: All three studies used participatory approaches to
research. Anticipated issues across the projects included:


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Needing to argue competence issues, particularly with the ethics committees
Mental Capacity Act compliance issues – capacity to participate, capacity to consent and who
makes those decisions
Confidentiality and anonymity issues
Researcher safety issues
3. Ethical issues emerging and developing: A key issue that ran through all three projects was
how people with experience gained access to the project, both as researchers and participants.
Whilst the process of getting ethical approval through the REC system did throw up some interesting
issues they were neither complex nor, in many ways, the core ethical issues: they were more details.
The real issues occurred when the projects went live and people wished to participate either as a
participatory researcher, or as participant. Barriers to participation came from a number of sources
(often unexpected) and raised issues about how the right to participate is enabled in practice. When
people wish to participate but are discouraged, dissuaded or actively told it is not possible by those
upon whom they rely on to support their participations, or when access systems are so complex that
people decide that to become participatory researchers is too complicated, this raises questions
about what makes a process ethical. Enabling access is, therefore, the focus of this workshop. The
themes explored, initiated through the use of a DVD, will include power, relationships, legislation
and bureaucracy.
4. Learning from the experience of working with these ethical issues: As the workshop will
be participatory this will be part of plenary on the day.
For more articles about studies that have used a participatory approach see
http://healthresearchimpact.wordpress.com/category/articles
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Tackling Ethical Challenges in Community-based Participatory Research
Durham University, 28th February 2013
Workshop 1B: Ethical issues in participatory museum and heritage research
Ethical issues in participatory museum and heritage research: Ownership and
informed consent in perpetuity
Contacts: Helen Graham, University of Leeds, [email protected]; Alex Henry, Curiosity Creative,
[email protected] ; Aileen Strachan, Curious, St Mungo Museum of Art and Religious
Life, Glasgow Life, [email protected]
1. Description of the projects: This workshop will draw on two recent museum-based participatory
projects and an interlinked AHRC-funded research project: ‘Partnership and Participation: Intellectual
Property and Informed Consent’. Both the museum projects – Culture Shock! (based at Tyne & Wear
Archives & Museums) and Curious (based at St Mungo Museum of Art and Religious Life, Glasgow
Life) actively sought to record, display and collect personal testimony and responses.
2. Ethical issues anticipated in the projects: Both the museum projects clearly identified informed
consent as an issue and developed all the usual approaches to securing consent from participants.
Museum projects, where the personal testimony is accessioned into the collection, do add an
additional layer of difficulty. Participants are not just asked to give consent for specific and clearly
anticipated uses but, in effect, for any possible use forever.
3. Ethical issues emerging and developing: Both projects have been keen to add aspects of the
personal responses to the collection because it is believed that this offers the best way of improving
the quality and richness of museum collections and offers a way of appropriately valuing the
participants’ contributions. However, it was assumed that the only way of managing this contribution
was using the same methods of ‘transfer of title’ as are generally deployed with items of material
culture. This raised some emerging issues, including participants wanting to use the potential of
editing digital stories to change their story after accessioning. This has raised the question of
whether and how museums should recognise their right over the story beyond the official ‘transfer
of ownership’ – which has originally been imagined as a cut-off point.
4. Learning from the experience of working with these ethical issues: One of the key issues raised
by exploring specific ethical issues is that they raise effectively political questions. One of the key
political arguments made in favour of the full transfer of title approach was that the museum needs
to distribute resources fairly and cannot focus ongoing and additional resources on a small group of
people. This asks specific questions about how accountability to individuals, especially significant due
to the personal nature of their donation, can be reconciled with accountability to the broader
‘public’. Finally the ethical dilemma of these projects also point towards the possibility of using the
relative idea of fixity in material culture conservation as a resource for rethinking ideas of fixity in
personal stories – might it be possible for museums to understand that they are collecting the idea of
an authored contribution rather than a specific, fixed and completed piece of ‘historical evidence’?
Further details: Culture Shock! www.cultureshock.org.uk/home.html; Curious:
www.glasgowlife.org.uk/museums/projects/curious/Pages/home.aspx ; H. Graham, R. Mason and N.
Nayling (2012) Earning Legitimacy: Participation, Intellectual Property and Informed Consent,
http://partnershipandparticipation.wordpress.com/; H. Graham (2012) (2012) ‘Modesty against the
cuts: museums + public + democracy + personal‘, Open Democracy, 2nd October; A. Strachan (2012)
‘Curious: Stories, Culture and Ideas in a Changing City’, Engage 29
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Tackling Ethical Challenges in Community-based Participatory Research
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Workshop 1.C: Ethical issues in participatory science research
Project 1: Turing's Sunflowers
Contacts: Erinma Ochu ([email protected]) The University of Manchester; Natalie
Ireland ([email protected]) MOSI (Museum of Science and Industry, Manchester) and Jonathan
Swinton ([email protected])
1. Description of the project: Citizen Science is where the public participate in scientific research on
a voluntary basis. Participation might include shaping the research question, crowdsourcing a
dataset and/or analyzing data [1]. Turing’s Sunflowers [2] was a citizen science experiment led by
MOSI and Manchester Science Festival to celebrate mathematician, Alan Turing, in the 2012
centenary of his birth [3]. Best known for cracking the enigma code during World War II, Turing was
also fascinated by how mathematics works in nature, e.g. in pattern formation [4]. In sunflowers he
noticed that the spiral patterns in the seed heads often followed the Fibonacci number sequence 0,
1, 1, 2, 3, 5, 8 (where the next number in the sequence is the sum of the previous two). Turing hoped
that by studying sunflowers he might better understand how plants grow, but died before he could
finish or publish this work [5]. Turing’s Sunflowers aimed to raise public awareness of Alan Turing’s
scientific legacy by encouraging the public to grow sunflowers to create enough data to test Turing’s
and other scientists' theories [6].
Who does it involve? Originally conceived by computational biologist, Professor Jonathan Swinton,
who approached MOSI with his citizen science idea [7], the project was coordinated by public
engagement specialist, Erinma Ochu, who was hired as a freelancer to work with MOSI’s Learning
Team and Jonathan Swinton.
Aims & Objectives: 1) To raise awareness of Alan Turing’s work on Fibonacci numbers by involving
3000 people from Greater Manchester; 2) To explore the role of maths in nature through a series of
public engagement activities; 3) To collect sufficient data to carry out the maths analysis and present
the results at Manchester Science Festival.
The team worked with a range of cultural and community partners to develop a community
engagement programme, inviting members of the Greater Manchester public to grow sunflowers,
document this activity (through photographs, videos and social media), collect data from their
sunflowers and submit this online. The data was then verified against photographs of sunflowers and
analysed by Jonathan Swinton. The preliminary results were presented at Manchester Science
Festival and online [7]. Manchester City Council provided free sunflower seeds, pots & gardening
canes for Manchester schools & community & growing groups and raised the profile of the project
through gardening festivals e.g. Dig the City and planting events in public parks in Manchester City
Centre. Traditional and social media were used extensively to engage the public in the programme
and to encourage partners and the public to host their own activities. These groups spread the word,
planted sunflowers, played with ideas of mathematics in nature and sunflowers, submitted data,
created learning resources and experimented with the results [8]. The project secured enough data
to analyse and confirmed Turing’s observations whilst achieving a global media reach of 62 million
people and participation of well over 3000 people in Greater Manchester. Project evaluation
demonstrated that all of the aims and objectives were met [8].
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Tackling Ethical Challenges in Community-based Participatory Research
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2. Ethical issues anticipated in the project: A range of ethical issues were considered at the planning
stage, including data ownership, photographic consents, recognition of public contributions, the
differing capacities of community groups and schools to participate and to understand the results.
Whilst MOSI had the final say on all decisions, a creative workshop at the outset involved all partners
in addressing and providing innovative solutions to challenges including ethical ones. It was agreed
at the outset that participants would be credited on the Turing's Sunflowers website and on
academic publications that resulted by linking to this page [9]. Members of the public were
encouraged to visualize, document and share their progress through blogs, photographs, video
diaries and learning resources. To avoid ownership issues over content, creative commons licensing
was encouraged for people to share their content with MOSI and more widely. Sourcing userproduced content for use within MOSI’s website enabled recognition of participants’ contributions
and saved a lot of time creating resources from scratch.
3. Ethical issues emerging and developing: Additional issues emerged at the first partner meeting
and online via social media including considering environmental sustainability. Additional partners
were sought or emerged (usually via social media) to advise on several issues, including enabling
public access to the results data, whilst maintaining privacy over personal data. Whilst a map
indicating where participants were growing sunflowers was used to drive participation and to
recognise contributions, it was important to not pinpoint individual houses were sunflowers were
grown.
Not everyone had the capacity to grow sunflowers outdoors as many people lived in flats or didn't
have a garden. Whilst several large cultural partners grew sunflowers on site and invited the public
to planting events, financial support was secured from the Royal Society for the Arts, Manufacturing
and Industry and the Granada Foundation to widen community involvement. This meant that
homeless individuals were involved and through Eastland Homes, a housing association, several
hundred Manchester residents were engaged through a family fun day and a Turing’s Sunflowers
float at Manchester Pride parade.
In terms of data ownership, people were given the option to submit their results to the research
project. Only one person opted out of this. We felt it was important that people were opting in to
the experiment. To ensure that people could understand the results, MOSI’s Turing costume put on
a public show ‘cracking nature’s code’ explaining the results through stories. To facilitate an
embodied knowledge of Fibonacci numbers and how they work, a community choir was invited to
compose and perform a simple song that illustrated the Fibonacci numbers in music [7]. This was
particularly important because the final evaluation revealed that some children and older adults
found it difficult to count spirals.
4. Learning from the experience of working with these ethical issues: Creative and crowdsourcing
solutions to ethical challenges seemed to work well as did the use of creative commons licensing on
photographic content. We worked with a number of partners who could advise us along the way,
including Open Data Manchester and BBC Outreach. It worked well, getting hackers to interpret and
analyse the data, but it is also important to enable participants without digital expertise to analyse
and understand the dataset. As part of the project legacy the project team is exploring ways to
create learning resources to support this, including the possibility of working with LGBT groups to
create resources. The crowdsourcing of resources could be achieved more effectively with more
time planned to encourage this. However the project reached a wide diversity of people in terms of
race, learning abilities, age and geographic location.
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Tackling Ethical Challenges in Community-based Participatory Research
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Recommendations. Apply the ethical guidelines at the outset of the project [10] and contribute to
and learn from crowdsourced Wikis that specifically address ethical issues for citizen science projects
[11]. Build in more time to crowdsource and encourage co-production of learning resources.
Further details:
[1] Tweddle, J.C., Robinson, L.D., Pocock, M.J.O & Roy, H.E. (2012). Guide to citizen science:
developing, implementing and evaluating citizen science to study biodiversity and the environment
in the UK. Natural History Museum and NERC Centre for Ecology & Hydrology for UK-EOF.
[2] Turing’s Sunflowers website www.turingsunflowers.com
[3] 2012 Alan Turing Year website: http://www.mathcomp.leeds.ac.uk/turing2012/
[4 Turing A.M. Morphogenesis, volume 3. Elsevier, 1992.
[5] Swinton J. Watching the daisies grow: Turing and Fibonacci phyllotaxis. Springer, second edition,
2004.
[6] Roger V.Jean. Phyllotaxis: A Systemic Study in Plant Morphogenesis (Cambridge Studies in
Mathematics). Cambridge University Press, January 1994.
[7] Turing’s sunflowers results: http://www.turingsunflowers.com/results
[8] Sally Fort. (2012) Turing’s Sunflowers Evaluation Report for MOSI.
[9] Turing’s Sunflowers acknowledgements:
http://www.turingsunflowers.com/results/citizenscientists
[10] Centre for Social Justice, Durham Ethical Guidance:
http://www.dur.ac.uk/beacon/socialjustice/ethics_consultation/
[11] Stone J. (2013) Of Citizen Science, Ethics, and IRBS – the view from science online:
http://blogs.scientificamerican.com/molecules-to-medicine/2013/02/05/of-citizen-science-ethicsand-irbs-the-view-from-science-online/
Workshop 1.C. Ethical issues in participatory science research
Project 2: Catalyst! Citizens transforming society – tools for change
Contacts: Mandy Naylor, Latent promise ([email protected]), Rebecca Ellis, Lancaster
University ([email protected]) from Catalyst advisory group [1]
1. Brief description of the project: Catalyst [2] is a 3-year interdisciplinary research initiative funded
by the Engineering and Physical Sciences Research Council (EPSRC) where community-academic
partnerships explore how digital tools might facilitate social change by addressing three research
goals:



What motivates citizens to participate in civic change?
What are the next generation of digital tools that might support change in a civic setting?
What lessons can be learned from reflecting on interdisciplinary research?
Who does it involve? Catalyst commissions a series of 6-9 month projects that develop novel digital
technologies to address a social need. Through calls for proposals, ideas labs and community-led
networking events, community-academic teams form to investigate Catalyst research goals with
mutually beneficial outcomes. Disciplines involved include: Computing, Design, Environment,
Sociology and Management. Catalyst is governed by an advisory group of Lancaster staff and
community representatives offering strategic advice, monitoring impact and generating and sharing
lessons learned [3]. A year on, there are four projects: Local Trade: a system which tracks trading
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Tackling Ethical Challenges in Community-based Participatory Research
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patterns to encourage locally beneficial trading behaviour; Access ASD: enabling civic participation of
people on the autism spectrum; Success in activist tweets: real-time predictions of the influence of
activists’ tweets based on their language and Patchworks: using frugal (cheap) technology to
encourage the homeless to access support services [4].
2. Ethical issues anticipated in the project: The original bid considered ethics around informed
consent and working with vulnerable adults. Ethical issues are raised with the advisory group and
project teams must consider ethical issues as part of their proposal. Catalyst uses PROTEE, a
management tool to learn from failure/success and hosts an annual knowledge exchange event to
reflect on lessons learned. Through team dialogues, PROTEE, draws out insights to support
innovation, project management and interdisciplinarity.
3. Ethical issues emerging and developing:
Mutual Benefit: Achieving mutual benefit is challenging. Whilst Catalyst aims to develop
academically novel technologies, often community organisations need ‘basic’ technological
solutions, e.g. a new website or practical prototype. Project teams negotiate this by addressing
additional needs alongside prototype development but this is often not planned at the outset.
Through PROTEE dialogues, it was recognised that the social value of Catalyst also lies in a ‘social’
prototype or way of ‘co-working’ that builds trust, mutual respect, confidence and presents
opportunities to learn, explore and experiment through the making of the physical prototype.
Time: Catalyst was designed around short project timeframes to maximize participation. However,
project teams found it challenging to get to know one another, carry out in-depth research on social
issues and co-design prototypes in such a short time span.
Ownership and Intellectual property: It took time to navigate institutional and departmental
barriers (tendering policies, allowable research expenses, preferred suppliers) to award allocated
funds to project partners and to agree fair intellectual property licensing. Consequently the first
project teams were unclear about ownership or roles and responsibilities, which created tensions
along the way.
Sustainability: Catalyst began at a time of significant budget cuts to capacity development in
community organisations. The advisory group proposed that community-led support help address
sustainability and capacity issues, particularly as Catalyst requires a significant commitment from
community organisations. Follow up support was delivered by two community organisations (Shared
Futures working with Latent Promise). This uncovered other challenges: e.g. one project team was
able to access follow on research funding to further develop the prototype, however restrictions on
funding criteria meant the community partner could not be included in the grant and this delayed
any commercial application by the community organisation who originally conceived of the idea. The
community lead is now being supported to seek alternative funding that can cover their costs.
4. Learning from the experience of working with these ethical issues:

Offer support to build community capacity before and after projects are selected to help
community organisations consider if a research partnership will work for them and to pick up
ethical issues during the lifetime of the project. With a community partner leading on this there
can be a frank exchange that might not be possible when talking to the people funding your
project.
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Tackling Ethical Challenges in Community-based Participatory Research
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
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Use the CBPR ethical guidelines to guide project development, selection and planning so that it
is embedded as part of the research process and time is given to consider, address and resolve
ethical issues.
Embrace the social prototype: develop participatory approaches to project planning, budgeting
and allocating roles and responsibilities based on passions, interests and abilities. Include budget
and time allocations for training and support to achieve this. This has been valuable on Access
ASD, which involves many different organisations.
Learn from projects and project resources that address similar ethical challenges. EPSRC
helpfully signposted us to other projects and networks they had funded facing similar challenges
including FRIICT [5] and CC Network+ [6]. Attending NCCPE [7] and AHRC connected
communities events, has also been of value. Armed with examples from related projects the
Lancaster research support office helped implement a procedure for awarding projects, which
included use of a generic public license to ensure communities could afford to develop their
prototypes further and a work plan with roles and responsibilities, key contacts for project
support and the budget outlined.
Catalyst is still reflecting on best ways of working and will publish interim lessons learned shortly.
Further lessons will differ depending on the projects being funded and the type of links made
between organisations. A recent project comprises several community organisations plus a public
body working together and is likely to throw up unforeseen ethical issues but using guidance will
help.
Further details:
[1] Catalyst Advisory Group web link: http://www.catalystproject.org.uk/content/advisory-group
[2] Catalyst Website: www.catalystproject.org.uk
[3] Whittle JW, Ochu E, Ferrario MA, Southern J and McNally R Beyond Research in the Wild:
Citizen-Led Research as a Model for Innovation in the Digital Economy Proceeding Digital Futures
2012, Aberdeen 2012
[4] Patchworks video: http://youtu.be/ydPcxuixhAw
[5] Framework for Responsible Research & Innovation in ICT website: http://responsibleinnovation.org.uk/frriict/
[6] Communities and Culture network+ website: http://www.communitiesandculture.org/
[7] National Coordinating Centre for Public Engagement website: www.publicengagement.ac.uk
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Tackling Ethical Challenges in Community-based Participatory Research
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Workshop 2A: Ethical issues in participatory arts and cultural research
Project 1: Arts-based biographical research: women, well-being and
community
Contacts: Maggie O ‘Neill (Maggie.o’[email protected]) Durham University and Susan Mansaray
([email protected]), Purple Rose Stockton-on-Tees
1. Description of the project: This arts-based research project was undertaken in partnership with
the Regional Refugee Forum North East and Purple Rose Stockton. We sought to explore ways of
seeing women’s lived experiences, well-being and sense of community in the context of their lives in
the Teesside. The research builds upon previous collaborative work on ‘Race, Crime and Justice’ in
the North East that was funded by the Ministry of Justice, Durham University, Northumbria and
Teesside Universities. The research used walking, storytelling and visual/photographic methods to
help make visible women’s lived experiences of living in Middlesbrough, Stockton and Hartlepool
and what community and community safety mean to them. Participatory arts (PA) and participatory
action research (PAR) methods were used to conduct a critical recovery of women’s lives and
experiences. Story walks helped to create individual and collective narratives about what it is like to
be a new arrival, an asylum seeker, and refugee and, for some women, refused asylum seeker.
Women were asked to draw a map from their home in Teesside to a special place marking along the
way places and spaces that were important to them. We talked about the maps and places and
agreed upon a collective walk that we would undertake together, taking photographs and recording
the voices of the women about the places they took us too. We then met with the photographs in a
workshop to discuss the photographs and choose the images for exhibition. The principles
underpinning PAR and PA are:
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


inclusion,
participation,
valuing all local voices,
Community driven and sustainable outcomes.
Community co-researchers worked with two academics, a sociologist and a psychologist from
Durham University, one of whom was a Fulbright Scholar, to conduct the research and support the
creation of visual representations of women’s lives, well-being and ‘community’. This research was
supported by the Regional Refugee Forum North East, Purple Rose Stockton and the Race, Crime and
Justice Consortium. We set out to document and share the stories of women seeking asylum in
visual form and also how their stories could be woven together to tell a collective tale of the search
for sanctuary. The stories of the women were varied, with some fleeing persecution from their
governments and others from kinship-based violence, whether forced marriage, female
circumcision, or domestic abuse. Some came into political opposition with the government, while
others suffered persecution in their local communities. They were journalists, nurses, teachers and
mothers from Africa, South Asia and the Middle East. Many left children behind when they fled,
while others took young ones in tow. Still others were single women without family support of any
kind.
2. Ethical issues anticipated in the project:

Sensitivity needed when collaborating with women who are seeking asylum or may have been
refused.
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Tackling Ethical Challenges in Community-based Participatory Research
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
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Timescale/duration of the project.
Arts based outputs.
Collaboration of different stakeholders—women, project, film maker, organisations. Clear ethics
framework agreed by all.
Agreement over media involvement, especially regarding the filmic work.
3. Ethical issues emerging and developing:



Research ethics as a process not an end stop or event.
Agreements over the film and what is and is not represented in film.
One woman detained on day one of the photo/walks.
4. Learning from the experience of working with these ethical issues:
Relationships and benefits of strong and clear ethics in participatory arts based research from design
through to creation of outputs /exhibition.
Further details:
http://www.dur.ac.uk/resources/sass/research/RaceCrimeandJusticeintheNorthEastWomensLivesWell-beingExhibitionBooklet.pdf
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Tackling Ethical Challenges in Community-based Participatory Research
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Workshop 2A: Ethical issues in participatory arts and cultural research
Project 2: Fulfilling Lives? Ethical Issues in participatory research exploring
the use of leisure time by people with learning disabilities.
Contacts: Christine Atkinson, Phillip Walton (Gateshead People), Se Kwang Hwang
([email protected]) Northumbria University and Helen Charnley
([email protected]) Durham University.
1. Description of the project: Fulfilling Lives is a participatory research project exploring the use of
leisure time by adults with learning disabilities. The aim of the project is to find out the kind of things
that people in Gateshead want to do and the barriers that may be preventing them. The project,
funded by Beacon North East, involves Gateshead Council
and Gateshead People, a self-advocacy group run by and for people with learning disabilities, along
with a range of supporting partner agencies. Researchers from Durham University and Northumbria
University have been supporting and guiding the process.
2. Ethical issues anticipated in the project:
 Power relations between people with learning difficulties, practitioners, researchers and
funders.
 Potential for marginalising people with learning disabilities because of time pressures.
 Questions of validity arising from concerns about understanding by participants: i) informed
consent and ii) data collection
 Ownership of the project and its outputs
3. Ethical issues emerging and developing:
 Lack of clarity about balancing participatory processes, leadership and accountability.
 Whose interests does the research serve?
 How can the work undertaken have an ongoing impact?
4. Learning from the experience of working with these ethical issues:
 The need to have a clear set of shared values from the start. It is worth investing time in
developing a common understanding
 The benefits of co-researching
 The use of visual methods in reducing power differentials
 The need for perseverance (and grasping opportunities) in disseminating findings to have
optimum impact in a context of public funding cuts
Further details: Gateshead People http://www.yvc.org.uk/GatesheadPeople.html
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Workshop 2B: Ethical issues in participatory research for social justice
Project 1: The use and potential of science education centres for tobacco
control – work with young activists (W-West)
Contacts: Dr Andrew Russell ([email protected]) Department of Anthropology and CoDirector Centre for Social Justice and Community Action; Brian Pringle
([email protected]) ASH – Scotland.
1. Description of the project: ‘Don’t Get Me Started’ is a Durham University/W-West Glasgow/ASHScotland/Espacio Ciencia (Montevideo) and CIET (Centro de Investigación para la epidemia del
tabaquismo) Uruguay collaborative research project on the use and potential of science education
centres for tobacco control. This project, funded by an HEA National Teaching Fellowship award, the
Santander mobility grant scheme and the Centre for Medical Humanities at Durham University,
involved six members of W-West (the Glasgow-based young person's advocacy group for tobacco
control) and co-researchers from Durham University, the Greater Glasgow and Clyde Health Board
and ASH-Scotland in a visit to 'Respira Uruguay' at the 'Espacio Ciencia' science education centre,
Montevideo, in February 2012. The purpose of the visit was to learn more about this unique
interactive exhibition, which is designed to discourage young people from smoking, and to consider
how it could be adapted for use in a UK context.
2. Ethical issues anticipated in the project: This project has a participatory rhetoric, but has it
enabled the full participation of the young people involved from beginning to end? Could it ever do
so?
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Involvement and input of young people from a wide age spectrum (aged 9-19)
Accepted ethical guidelines were followed, including consent letters; fulsome risk assessment
work required by Greater Glasgow and Clyde Health Board which, while important, didn’t seem
to capture what might be the real risks involved in undertaking a visit of this nature. Rather,
they reflected the fears and anxieties of senior managers about taking young people to South
America, even though Montevideo is in reality generally much safer for young people than
Glasgow!
Outputs from the research: long-term - a UK version of Respira Uruguay, with appropriate
‘cultural detailing’; meanwhile conference presentations and an article. Involvement of and
ownership by all 12 visit participants (and our hosts?) in these things.
3. Ethical issues emerging and developing:
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Ownership of a resulting exhibition (and associated management issues).
Funding for such a venture – what funds would be acceptable, from what sources?
Ensuring the ‘intellectual property rights’ in developing such an exhibition are respected and
benefits transfer back to those who had the initial idea for it in Uruguay.
Wealthy benefactor syndrome – what can cap Uruguay? Maintaining the momentum (both of
W-West as a tobacco control activist group and with the goal of developing an exhibition),
particularly when funding is tight.
The relationship between a high income country like the UK and a low to middle income country
like Uruguay is, in development terms, normally a one-way street. We challenge the basis of
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Tackling Ethical Challenges in Community-based Participatory Research
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perceptions like this with our eagerness to learn about and value the Uruguayan public health
experience.
4. Learning from the experience of working with these ethical issues:
Sometimes, one just has to have a good idea and lead on it, acknowledging the power dynamics that
exist, and head off into unknown territory – take chances!
Young people as tobacco control activists – keen awareness of tobacco as a social justice as much as
a health issue, and the importance of developing these aspects in any resulting exhibition.
The care and attention taken by the young people involved in this project, and their good humour at
all times!
Uruguay is in many respects light years ahead of the UK and Europe in tobacco control. We learnt a
lot, while sharing information on areas of tobacco control that the UK is arguably further ahead on
than Uruguay (e.g. youth work, cessation services, mental health and prisons).
Further details: Blogs: http://medicalhumanities.wordpress.com/2012/02/13/dont-get-me-startedan-international-collaboration-on-young-people-and-smoking-participatory-action-research-visituruguay-february-2012/; http://medicalhumanities.wordpress.com/2012/02/15/the-smokinginterest-group-in-uruguay/; http://medicalhumanities.wordpress.com/2012/02/19/sig-in-uruguay/;
An English language video of the Espacio Ciencia exhibit can be seen on:
http://latu21.latu.org.uy/espacio_ciencia/en/index.php?option=com_content&view=article&id=127
%3Avideos&catid=42%3Aexhibiciones&Itemid=101
Workshop 2B: Ethical issues in participatory research for social justice
Project 2: In whose interest? Ethical challenges in a collaborative action
research project on high cost credit with households experiencing poverty
Contacts: Jan Flaherty ([email protected]) and Sarah Banks ([email protected]),
Durham University; Tracey Herrington ([email protected]) and Greg Brown
([email protected]). Thrive; and Mark Waters ([email protected]), Church
Action on Poverty.
1. Description of the project: Debt on Teesside is a two-year collaborative action research project,
which started in 2011, funded by a grant from the Northern Rock Foundation. It is a partnership
between Thrive, a community organising venture based in Teesside operating under the aegis of
Church Action on Poverty (CAP), and Durham University’s Centre for Social Justice and Community
Action. The project developed from Thrive’s previous work, which found significant problems with
high cost credit use and debt in poorer households. As action research, there is an explicit focus on
bringing about change, both at household level and at the organisational and policy level through
collective action. The project has developed a programme of household mentoring on money
management, linked to community-based campaigns focussing on the exploitative practices of high
cost credit companies, especially doorstep lenders. The action research aims to investigate what
factors shape and/or constrain financial choices made by participants; examine the impact of
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mentoring on behaviour and attitudinal change and choices around money management; and to
contribute to community campaigns.
24 households were recruited to take part in the project, with one person being a ‘key contact’, who
gave detailed financial information in an initial interview. At the time of recruitment, no key
contacts reported being in paid work, but two had a partner in paid work. All other households
received income solely from benefits or a mixture of benefits and tax credits. With limited access to
mainstream credit, such households often turn to high cost credit sources for money and goods
including: rent to own stores, catalogues, doorstep lenders and payday loans with APR charges
ranging from 437% to more than 4,000%. All participating households had problem debts, ranging
from £340 to more than £10,000, many accrued from high cost credit sources.
Each household was offered a mentor, who would aim to meet them monthly and maintain contact
via telephone and text messages between meetings. Some households did not take up the
mentoring offer, and with others the contact has been variable. The role of the mentor is to look at
the priorities identified by the household, signpost services and organisations and support positive
change, preferably away from high cost credit choices towards more financially sustainable options.
On the campaigns and policy front, Thrive and CAP have been instrumental in changing the lending
practices of three significant rent-to-own companies and are currently working on an ‘affordability’
campaign highlighting the need for loan companies to take into account whether people can afford
the loans on offer.
2. Ethical issues anticipated in the project: The main issues anticipated were around how the
partnership would work, and some of the complexities relating to confidentiality if people from the
local community acted as mentors. A partnership agreement was made between Thrive and
Durham University, outlining the responsibilities of each organisation. The University was the
grantholder, hence responsible for the project overall, and was primarily responsible for the
research aspects of the project, whilst Thrive was responsible for recruiting and supporting
households and mentors and for campaigns. Accepted ethical guidelines were followed, including
informed consent of households and safeguards regarding anonymity.
3. Ethical issues emerging and developing:
Consent - Some participants were willing to give consent and sign up to the project on an initial visit
from a Thrive worker, before learning the full details of what was involved. To ensure that
participants understood the implications of their involvement and uses of the information, the
researcher ensured that prior to the initial interviews, the consent form was read through in detail
and examples given of possible uses of the data.
Mental health issues - During the course of the project, it became clear that a significant number of
participants were experiencing mental health-related problems. This led to discussion by team
members about potential exploitation of participants, including consideration of the extent to which
their consent was fully ‘informed’. One of the approaches used in the campaigning element of the
project is to hold public assemblies, at which people with direct experience of high levels of debt are
asked to speak. Whilst this gives voice to people facing financial exclusion, it also exposes people to
potential public embarrassment and may cause emotional pain. The need to support people fully
through this process is very important.
Donations - An unexpected issue arose regarding a donation accepted by Thrive. In the middle of
the research project, Thrive’s Management Committee accepted a donation of several thousand
pounds from the staff fundraising efforts of a high-cost credit company, Buy as You View. Thrive had
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Tackling Ethical Challenges in Community-based Participatory Research
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previously campaigned against the unethical practices of this company and is currently working with
the company to reform some of its ways of working. The Durham University partners found out
about the donation after it had been accepted. This caused some tension and debate within the
project team. Thrive’s community organising approach is premised on the idea ‘no permanent
friends, no permanent enemies’, meaning that their tactics include working with organisations
against which they have campaigned in order to effect reform. Taking money from Buy As You View
was not regarded as compromising the integrity of Thrive’s work nor the research. The two
University staff, however, felt that accepting a donation of this kind was contributing to giving
credibility to a high cost credit company whose core business revolved around exploiting poor
people. It might also damage the integrity of Thrive’s work, and by association the action research
project.
4. Learning from the experience of working with these ethical issues:
Differences in values and ways of working may not always be apparent at the start of a project, so it
can be helpful to discuss how to deal with differences at the start. In future projects, the donations
issue could be discussed beforehand by partners, possibly with scenarios of when and from whom it
might be regarded as un/acceptable to take a donation and in what circumstances each partner
should consult the other about the implications.
Further details: www.dur.ac.uk/beacon/socialjustice/researchprojects/debt_on_teesside/
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Workshop 2C: Ethical issues in participatory environmental research
Project 1: Keeping it fluid: participatory ethics in river management research
Contact: Prof Rachel Pain, Department of Geography, Durham University, Co-Director Centre for
Social Justice and Community Action, [email protected]
Brief description of the project: This workshop draws on Building Adaptive Strategies for
Environmental Change with Rural Land Managers, a RELU-funded research project to develop and
implement Participatory Action Research (PAR) in river catchment management. The PAR group
consisted of social and physical geographers from Durham University, and members of the Lune
Rivers Trust. Traditionally, land management issues are researched - that is academics are often
commissioned by government agencies to carry out a piece of research, which is then used to inform
legislation or policy changes that local communities then have to implement. This approach has
often failed to either tackle the root causes of land management problems or to be well thought of
by local communities. Our novel approach to participation is PAR. At the heart of PAR is the belief
that research should be done with and for communities. The role of academics here is as facilitators
not researchers. This has not been applied to this area before in the UK and so this project is
experimental.
Ethical issues anticipated in the project: The usual ethical issues in participatory research were
considered and discussed; a protocol for decision-making, confidentiality, authorship, ownership of
data and outputs, etc.
Ethical issues emerging and developing: The main issues that emerged were about:
(i) how to conduct research that was critical and accountable, without alienating any of the many
stakeholders/users of the rivers;
(ii) how to influence the way that policy-making operates – top-down, from a bottom-up project
approach.
Learning from the experience of working with these ethical issues: The project worked well as a
collaborative venture where decisions were shared, and evaluations showed that everyone in the
group was happy with the experience of knowledge co-production, and with the outcome. The key
issue of how to change the structure of knowledge production at a large scale persists.
Further details:
Pain, R., Whitman, G., Milledge, D. & Lune Rivers Trust (2012) Participatory Action Research Toolkit:
an introduction to using PAR as an approach to learning, research and action,
http://www.dur.ac.uk/resources/beacon/PARtoolkit.pdf
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Tackling Ethical Challenges in Community-based Participatory Research
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Workshop 2C: Ethical issues in environmental research
Project 2: Permaculture, co-production and ethics in participatory research
Contacts: Tom Henfrey ([email protected]), Durham University and Wilf Richards
([email protected]) , Transition Durham/North East Permaculture Network
1. Description of the project: The presentation draws on experiences of several collaborations over
the past few years relating to the general theme of Permaculture, particularly its applications in
community development such as Transition Towns.
2. Ethical issues anticipated in the project: Permaculture is a design approach rooted in three
overlapping ethics: earth care, people care and fair share. Permaculture design applies of a set of
principles derived from observations of natural systems to the design of human habitats and
organisations that reflect and promote its three core ethics. The prevailing ethical theme of these
collaborations has been how approaches rooted in these ethics, along with established methods for
acting upon them, transforms the way in which ethical issues arise and negotiated within research
partnerships.
3. Ethical issues emerging and developing: We have developed a deeper understanding of the
affinities between permaculture ethics and those of collaborative research, and how applying
Permaculture principles in the design of research projects can allow a foregrounding of ethical issues
as an integral part of the research process, not a separate issue potentially conflicting with academic
or other criteria.
4. Learning from the experience of working with these ethical issues: This learning has been
systematised as part of the background to a set of guidelines for research involving Transition and
other forms of community-led sustainability action. It also raises broader questions about the
compatibility of ethics of environmental protection and social justice with institutional ethics that
are often implicit. Situating research in relation to established ethical frameworks with clear linkages
to practice allows hidden ethics to be revealed and challenged.
Further details: www.transitionresearchnetwork.org
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