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Abstract

Designing technology for and with children comes with unique ethical challenges and responsibilities, related both to the inclusion of children in the research and design processes and to the outcomes of that work. With this panel, our intention is to create a forum for critical reflection and debate about best practices, underlying drivers and persistent or emergent ethical challenges. As a starting point, this panel aims to focus on questions around the involvement of children in our research and we aim to hear from designers and researchers in this community with different backgrounds and perspectives to reflect the diversity of work being done and cultures in which they are conducted.
INTERACTIONS.ACM.ORG74 INTERACTIONS NOVEMBER–DECEMBER 2017
In this forum we celebrate research that helps to successfully bring the benefits of computing technologies to children,
older adults, people with disabilities, and other populations that are often ignored in the design of mass-marketed products.
— Juan Pablo Hourcade, Editor
FORUM UNIVERSAL INTERACTIONS
Alissa N. Antle, Simon Fraser University
The Ethics of Doing Research
with Vulnerable Populations
comprehensive university. I live in
Vancouver, Canada, a city with one of
the highest quality-of-life ratings in
the world (https://www.mercer.ca/en/
newsroom/mercer-2017-retirement-
quality-of-living-rankings.html). I
have kind and talented friends and
colleagues. I have faced little prejudice
in raising my two sons as a separated
single mother. I had many of the
privileges that my culture oered,
so I was a little suspect of my own
motivation. It’s those doubts that
led me to deeply examine my own
ethical views and practices and bring
them to the forefront of my research,
rather than thinking of them as an
afterthought or as some annoying
paperwork that I had to get done.
This commitment to stop and really
think about what I was doing with
my research in Nepal was critical to
deepening my understanding of the
ethical issues that arise when working
with vulnerable populations.
Most ethics boards classify all
children as a vulnerable population.
The reason given for this is that
children lack the necessary cognitive
capacity to decide whether or not to
participate in most research. It may
be dicult for them to foresee the
risks or potential benets to their own
well-being or to understand how the
conditions of research may or may
not be in their own best interests.
Children who have special challenges,
such as those with dyslexia, ADHD,
developmental delays, or mental health
issues, or children living in poverty,
who may be illiterate or repressed, may
have even less capacity to understand
and give assent to participate in
If there is one thing that 20 years
of conducting research in child-
computer interaction has taught
me, it’s that every time I work with
children, something I’ve never
even anticipated will happen.
Sometimes I face new challenges
in trying to get children to follow a
specic study protocol, or I nd that
a new understanding challenges my
thoughts about the role that technology
can have in supporting children’s
development. But in my recent
program of research working with
children living in poverty in Nepal,
many things occurred that challenged
my thoughts about the ethics of doing
research with vulnerable populations.
I went to Nepal to attend the Advances
in Computing Entertainment (ACE)
conference. There, along with one of
my graduate students, I led a workshop
to introduce design thinking to
Nepali children at a private school in
Kathmandu [1]. After the conference,
I went to the ecotourism town of
Pokhara to vacation for a few days.
Which is when I began working with
children who live in poverty—instead
of going on vacation!
There’s a stark juxtaposition of
Westerners trekking and paragliding
in the Himalayas with the reality of
young children who are too poor to go
to free schools, who are beaten daily,
who do not have enough to eat, and
who are sold into the sex trade for only
a few dollars. This contrast made it
very dicult for me to do anything but
try to gure out a way to help some of
these children. But as a child-computer
interaction researcher and designer, I
have a fairly limited skill set. I know
how to design and evaluate new
technologies for children—and that’s
really all I can oer.
When an opportunity came up to
work with children living in poverty
who attended a non-prot school
(http://www.nepalhousesociety.org ),
I leapt. Any donations I might make
would be unlikely to signicantly
benet these children due to agency
overhead and political corruption.
Instead, I worked with a team from
Canada and Nepal to develop and
deploy a tablet-based brain-computer
interface (BCI) system to help these
children, who had suered multiple
traumas, learn and practice the self-
regulation of anxiety and attention.
The goal was to improve their ability to
self-regulate during school [2].
It was during my work in Nepal
that I had a head-on collision with
ethics. During the early months, I
asked myself almost daily if I was
doing any good in the world or if I
was just assuaging my Western guilt.
I’m a tenured professor at Simon
Fraser University, a well-respected
Insights
Five questions to ask when working with
vulnerable populations:
How can we know we are
providing benefits?
How can we work with those who need
help but are least able to give assent?
How do we find a balance between
rigor and ensuring our research
causes no harm?
How do we manage attachment to
the research team?
What will we leave behind?
INTERACTIONS.ACM.ORG NOVEMBER–DECEMBER 2017 INTERACTIONS 75
research. Working with and for
children, which is the cornerstone
of the child-computer interaction
community, raises a number of ethical
questions.
ETHICAL QUESTIONS
I’ve come to think that any discussion
of the ethics of conducting research
with vulnerable populations, such
as children in the developing world,
should be grounded in a three-part
foundation. The rst is that we
must be willing to take the time and
make the eort to be aware of and
ask ourselves some of the dicult
questions that arise when working with
vulnerable populations. The second
is that we must understand that we
view the world through a lens of our
own experience. In order to better
understand vulnerable populations, we
need to be willing to step away from
this lens, ask questions, and listen
deeply to the answers. The third is
that we should consider the Belmont
Report’s tenets of welfare, justice,
and respect (https://www.hhs.gov/
ohrp/regulations-and-policy/belmont-
report/index.html) in our dealings
with vulnerable populations, keeping
in mind that often what we ought to do
is not always consistent with what we
can do.
With this tripartite foundation in
mind, there are ve issues that I came
up against in my work in Nepal. I pose
them as questions here, which I urge
you to consider when you work with
any vulnerable population, whether
that be children living in poverty or
people of any age with physical or
mental health challenges or the elderly
in developed countries.
First, how can we feel relatively
certain that we are providing benets to
the population we are working with? We
may think that children can benet
from participating in our research
or from using the computational
systems that result from our research.
But is this true? How do we know if
the children we study are actually
beneting from our research? In
answering this question, it is important
to understand that we all make
assumptions about what children’s
development, education, and even their
lives should look like.
In Crazy Like Us, the Globalization
of the American Psyche [3], Ethan
Watters suggested that mental health
professionals from industrialized
countries have generated modern
theories of the human psyche, created
treatments based on these models,
and then exported them to many of
the world’s cultures, sometimes with
devastating consequences. Can we
really take what we know about mental
health and well-being and transfer it to
other cultures? The assumption behind
this commodication is that everyone
is crazy like us. But is this true? Before
we can assess potential benet, we
must be aware of the assumptions we
use to determine what benet means.
In Nepal, we did this by working
closely with the community at the
school, including Nepali counselors,
to set goals for the benets we thought
might come from our research.
Based on the results from informal
interviews, as well as detailed
observational notes and photographs
taken on site visits to the school and
to the surrounding communities, we
returned to Canada and built a BCI
application called Mind-Full (http://
www.mindfullapp.ca ). The system
provided neurofeedback depicted in
ways that we hoped the children could
understand, and that would make
their invisible brain states visible to
them as they learned to self-regulate.
Mind-Full comprised three games.
Two of the games showed children how
to use their bodies to create calmer
brain states (i.e., self-regulate anxiety),
and the other game helped them learn
to focus their attention. The games
were based on everyday activities
that the children already knew how
to do, like blowing on a pinwheel to
make it spin. The act of blowing (or
deep breathing) produces a calmer
brain state. We also built a second
application that let the counselors
calibrate the EEG data, adjust the
diculty of the games, and see each
child’s brain state in real time. It
would not have been possible to create
this kind of system without trying to
see the world through the eyes of the
Nepali children and their caregivers.
Once we had the Mind-Full system
designed and usability-tested in
Canada, we went back to Nepal to
conduct a controlled eld experiment
at the school. When we developed
the assessment instruments for the
Showing rather than telling what children will do in Mind-Full sessions.
Can we really take what
we know about mental
health and well-being
and transfer it to other
cultures?
INTERACTIONS.ACM.ORG76 INTERACTIONS NOVEMBER–DECEMBER 2017
FORUM UNIVERSAL INTERACTIONS
harm the children we work with? The
challenge is understanding the trade-
o between rigor in research design
and causing harm to the children. The
gold standard for eectiveness of an
intervention is a double-blind, random,
controlled experiment. This design
requires an active control group with
a placebo (e.g., sham neurofeedback)
that creates the same expectations of
benets as the real intervention. That’s
the right design for rigor. But is this
ethical? Putting the children through
an intervention that I was almost
certain wouldn’t help them seemed
unethical. It also seemed unacceptable
to me to use valuable resources and
time to run sessions with the children
using a placebo intervention instead
of using those resources to help the
children in other ways. I was also
concerned that a placebo intervention
might directly harm the children.
For example, it might have negatively
impacted their self-esteem if they
failed to progress. And yet if we do not
use a control group and resort to a case
study, then it is dicult to be sure that
the intervention is eective. Again,
here were may have used valuable
resources but may not be clear about
the benets.
In Nepal we decided to use a waitlist
control-group design, so that all the
children had the opportunity to use the
intervention. We ran the rst group
of children through the intervention
and used a pre-post assessment design
to decide if we thought there was
benet [2]. We saw large within-group
improvements on survey measures
of “calm” and “attention” and saw
little change in the control group, thus
reducing the likelihood that the cause
of the improvement was maturation
or learning. Since it seemed likely
that there was benet, we then ran
the waitlist children through the
intervention [4]. This study design felt
like a balance between being rigorous
and being ethically sound.
Fourt h, how do we manage children’s
expectations and attachment with the
research team in ways that will minimize
any emotional damage to the children?
The challenge is determining how
to manage children’s expectations
and attachments to us as researchers.
When I was speaking with the head
of a Nepali orphanage, I learned that
study, our starting point was the
report cards that the school used to
assess the children. These gave us a
further window into the school’s goals
for the children. Fully understanding
the goals required us to ask questions
about their notions of well-being and
developmental milestones. We had to
be willing to listen to the answers, even
when it meant revising our research
designs and protocols. We spent almost
a week at the school before starting the
study, redeveloping our survey-based
assessment instruments and tuning the
Mind-Full system and session protocol,
which dictated how the counselors
would work with the children. Many
elements of the study design changed
as we adapted it to a culture and
environment that were very dierent
from any in which we had ever worked.
Our study results indicated that all
of the children were able to learn to use
Mind-Full within a few minutes. Over
time, through their sessions with their
Nepali counselors, the children also
improved their ability to self-regulate.
They were able to calm down and
focus, not just on playing the Mind-Full
games but also on the playground and
in the classroom [4]. From a research
point of view, the project was a success.
But at the end of the day I had to ask
myself if the children really beneted.
For the answer, I turned away from
scientic evidence and looked to the
responses of the people who gave their
time and energy to do the study with
me. When the head counselor at the
school asked us to continue working
with them, I had some assurance that
I had helped them provide benets to
their children.
Second, given the requirements of
many university ethics boards, how can
we work with children who may most
need help but are least able to give assent?
The challenge is how to work out
ways of presenting research that are
comprehensible to children. Otherwise
we exclude the children who could
benet the most from the work we do,
because they cannot easily give assent
or because they may be dicult to
access or work with.
In Nepal I faced the challenge of
how to get assent from children who
did not speak English, had not yet
learned to read and write, had never
used computers, had never seen an
EEG headset, and, of course, had no
idea what research was. Yet somehow
I had to explain these things and ask
them if they wanted to participate in a
research study with neurofeedback to
improve their ability to self-regulate!
Instead of telling the children
what the study was about, we decided
to show them. For instance, we
demonstrated how to take pictures
with a tablet, which some had seen
tourists do. We showed them that
they could tap on their photo, which
served as their ID, to start the Mind-
Full app. The rst game began with
an illustration of a young Nepali
girl holding a pinwheel, which was
something they could understand and
mimic. My son, who was 12 years old
at the time, demonstrated how to play
the Mind-Full games. The children
watched him take deep breaths to
calm his mind and saw that this caused
the pinwheel on the tablet to spin. All
the games were based on activities
that were familiar to the children.
My son showed them how he used his
body to cause digital eects that were
represented in ways that made sense
to them (e.g., sustain calmness to land
a paraglider, focus visual attention to
build a rock cairn). Although my son
was foreign, male, and older than these
children, he was not yet an adult and
he had no existing power relationship
with them. The entire assent process
took place between the children, my
son, and their counselor. I think this
may have avoided the power imbalance
that would have existed between me
and them if I had been involved. I’m
still not clear if the children really
understood what it was they would
do in the study, but I think they did
understand that it would not harm
them and that it would be dierent
from anything they had ever tried.
They were curious to give it a go.
Third, how do we nd a balance
between conducting rigorous research
and ensuring that our research does not
The entire assent
process took place
between the children,
my son, and their
counselor.
INTERACTIONS.ACM.ORG NOVEMBER–DECEMBER 2017 INTERACTIONS 77
software worked, how to upload log
les, and how to conduct software
upgrades, providing valuable technical
training. At the end of the study, we
left two versions of the Mind-Full
system, including all the hardware.
The sta could then continue to work
with the children if they chose. We
knew that even if they didn’t, they
could utilize the four tablets. For
example, the tablets provided a way for
counselors to take notes, access email,
and collect data remotely when they
were working with youth at remote jail
sites. Back in Canada, we also raised
money for an operation for one of the
girls at the school, which had nothing
to do with our research and everything
to do with ethics.
By examining these ethical
questions as we plan and conduct our
research, we can, as a community, take
the necessary care to ensure that our
work has a positive impact and that
we are contributing in ways that are
important not just in our own minds
but also in the lives of the vulnerable
populations that our work is intending
to serve.
Endnotes
1. Antle, A.N. and Bev ans, A. Creative
design: Explor ing value propositions with
urban Nepalese children. In Advan ces in
Computer Entertainment, Lecture Notes
in Compute r Science 7624. A. Nijholt, T.
Romão, and D. Reidsma, eds. Spri nger,
Berlin/Heidelberg, 2012, 465–468.
2. Antle, A.N., Chesick, L., Levisohn,
A., Sridha ran, S.K., and Tan P. Using
neurofeedback to teach self-regulation
to children living in pover ty. Proc. of
Confere nce on Interaction D esign for
Children. ACM P ress, 2015, 119–128.
3. Watters, E . Crazy Like Us, the
Global ization of the Amer ican Psyche. Fre e
Press, New York, 2010.
4. Antle, A.N., Chesick, L., Sridhara n, S.K.,
and Levisoh n, A. Learning self-regulation :
Can a brain computer interface help
children living in pover ty? Personal a nd
Ubiquitous Computing. (under review).
Alissa Antle is a professor in the School
of Interactive Arts + Technology at
Simon Fraser University. Her work in
child-computer interaction pushes
the boundaries of computation to augment
the ways in which children develop, think,
and learn. In 2015 she was included in the Royal
Society of Canada’s College of New Scholars.
aantle@sfu.ca
they do not allow volunteers from
other countries to work directly with
the children at the orphanage. They
had seen a pattern where a child would
form an attachment to a foreigner. This
often created an expectation in the
child’s mind that the foreigner would
adopt the child, return to care for
them, or provide funding (i.e., perhaps
send them to a foreign boarding
school). This expectation often reduced
the child’s motivation to try and make
a better life for themselves. In addition,
children at the orphanage often became
emotionally attached to volunteers, and
when they left there was attachment
damage (https://childtrauma.org/
wp-content/uploads/2013/11/
Bonding_13.pdf ).
In our study, to manage
expectations and reduce attachment
damage, none of the researchers on
my team worked directly with the
children in the Mind-Full intervention
sessions. Instead, we trained and
coached the counselors at the school
to run the sessions. While this may
have reduced the amount of control
we had over the intervention protocol,
ethically it seemed like the right
choice. Together with a Western-
trained therapist, I spent the rst
week of the sessions on site checking
that the intervention protocol was
being followed, being there to address
questions and provide coaching. Our
team then left the site, remaining
in email contact for several weeks,
returning to do another check-in and
to be present for the post assessment.
In this way, we avoided having the
children form attachments to us.
Fifth, what will we leave behind
when the research ends? The challenge
is thinking ahead and addressing
the legacy that should be left behind
when the research is complete. It
also includes asking if there are other
contributions outside of research that
can be made to the community in
which we are working.
One of the principles of the non-
prot organization that runs the Nepali
school is that when people come from
developed countries, their role is to do
what is called capacity building. This
means transferring skills, knowledge,
and techniques to the Nepali sta
who work at the school, rather than
parachuting in, doing work, and
then leaving. We also felt that it was
important to ask the school what we
could leave behind and what they
wanted as a legacy.
We came up with a number of
legacy items. First, we spent the better
part of a week training all the teachers
and counselors to assess the children
rather than doing it ourselves. We co-
created an assessment administration
manual with examples of observable
behaviors taken directly from the
school context. The ability to assess
the children using an observation-
based survey instrument may improve
the sta’s capacity to set goals and
monitor the children’s progress in all
elements of their schooling. We also
spent a good deal of time with two
of the counselors explaining how the
What happens when the research is over.
DOI: 10.1145/3137107 COPYRIGHT HELD BY AUTHOR. PUBLICATION RIGHTS LICENSED TO ACM. $15.00
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When working with children in participatory design activities ethical questions arise that are not always considered in a standard ethics review. This paper highlights five challenges around the ethics of the value of design and the ethics of the children's participation and presents a new tool, CHECk that deals with three of these challenges by virtue of two checklists that are designed to challenge researchers in CCI and HCI to critically consider the reasons for involving children in design projects and to examine how best to describe design activities in order that children can better consent to participate.
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In this paper we explore the practice of ethical responsiveness in Human–Computer Interaction (HCI) research, by presenting an empirical case study with a genocide memorial centre in Rwanda, focusing on researcher practice and experience. Our research investigated how this cultural institution operates, working with local and global communities and organizations to sustain its activities. We introduce our case to create a ‘rich picture’ of the ethical context for consideration. Drawing upon our autoethnographic insights as HCI researchers who were members of a larger project team, we will go on to provide a qualitative account of the ethical sensibilities that we engaged in the course of our case study, and specifically how, in conducting and reporting on the research, we chose to position ourselves relative to the institutional values of the centre and the personally held beliefs of its staff, as our research partners, participants, and stakeholders. We also address how our work dealt with broader ethical concerns of working in socially, culturally and politically sensitive settings. Our paper argument hinges around our developing practice of ‘ethical responsiveness’, grounded in established philosophies. We draw upon Pragmatist and Dialogical ethics to position researcher answerability within relationships between the key research partners and stakeholders. We further conceptualize ethics as a lived and emergent concern made manifest through these relationships, experienced in terms of feeling the ethical weight of being answerable to others and being responsive to this in terms of research process. We arrive at the following conclusion: to be answerable to others is to position yourself politically in relation to others. In closing we discuss the implications of this positioning for doing transnational and value sensitive design research in the HCI field. © The Author(s) 2018. Published by Oxford University Press on behalf of The British Computer Society. All rights reserved.
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The emergence of 'third paradigm' Human-Computer Interaction (HCI) was driven by the shortcomings of existing approaches to adequately describe and understand the ways people interact with a new breed of pervasive digital technologies in everyday life. In response, new approaches became situated, value-driven and participatory with a shift towards studying HCI in the wild. With technology reaching into every aspect of our lives, the ethical and moral responsibilities of designers and researchers have increased. However, while HCI's design and research methodology have become fluid and responsive to reflect the paradigm shift, ethics is still widely interpreted as a static, anticipatory and formalised process. In this article, we address this gap and propose In- Action Ethics as a novel framework that links anticipatory ethics with the practice of HCI research. We start by laying out the foundations for In-Action Ethics by reviewing relevant work in ethics and moral philosophy, and discuss the current state of ethical perspectives in HCI, Action Research and Responsible Science and Innovation. We provide two examples from our own work to show how situated, explorative and design-oriented HCI projects raise issues of ethical importance that formal ethics is struggling to manage. On the basis of our experiences and those of others, we start developing key qualities for an In-Action Ethics framework and show how those qualities can be operationalised in relation to the realities of existing structures by introducing the concept of ethos building and care. © The Author 2016. Published by Oxford University Press on behalf of The British Computer Society. All rights reserved.
Conference Paper
Participatory Design (PD) gives users a voice in the design of technologies they are meant to use. When PD methods are adapted for research with children, design teams need to address additional issues of ethical accountability (e.g., adult-child power relations). While researchers have taken measures to ensure ethical accountability in PD research with children, to our knowledge there has been no work examining how former child design partners view ethical issues surrounding their participation. In this work we ask: How do children view ethical issues around their role on Participatory Design teams? We present findings from surveys and interviews with 12 former child design partners. Findings, identified by the former participants themselves, outline: (i) balancing attribution and anonymity, (ii) promoting ongoing consent and dissent, and (iii) cultivating a balanced design partnership. From these findings we recommend practices for researchers and designers of children's technologies that align with participant views.