Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
Indigenous children and young people’s participation in social research raises a range of ethical issues that researchers and participants must grapple with prior to and throughout the research process. These issues include for example, matters to do with protocols for seeking consent, ensuring the research process is culturally respectful and age appropriate, whether the research environment and methods used are child friendly and participants can freely express their views, and ensuring the research endeavour is mutually beneficial.
In Australia, all research involving Indigenous children and young people must be guided by, and adhere to the principles articulated in the National Statement on Ethical Conduct in Human Research (‘National Statement’), particularly chapter 4.2 of that Statement. If the research is health related it must comply with the National Health and Medical Research Council’s Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (‘NHMRC Values and Ethics Guidelines’). These documents instruct researchers about how to undertake research in an ethically sound manner, and the principles they contain are fundamental to the manner in which Australian ethics committees assess human research applications. Additionally, the Guidelines for Ethical Research in Australian Indigenous Studies (‘AIATSIS Guidelines’) are particularly instructive and helpful and are becoming more widely used by researchers and ethics committees alike.
There is a gap however, in relation to a comprehensive ethical framework for the involvement of Indigenous children and young people in social research. The National Statement communicates the ethical parameters for the involvement of children in research; and the NHMRC Values and Ethics Guidelines and the AIATSIS Guidelines set out a framework for the involvement of Indigenous people in research. The National Statement specifically refers to research relating to children and young people, but does not mention research relating to Indigenous children and young people; and there is no mention of children or young people in either the NHMRC Values and Ethics Guidelines nor the AIATSIS Guidelines. Thus, in Australia there is no single overarching ethical framework that specifically pertains to the involvement of Indigenous children and young people in research. Read together however, these three documents provide a firm basis upon which to develop and assess the breadth of ethical considerations regarding the involvement of Indigenous children and young people in research, particularly when read in conjunction with the Convention on the Rights of the Child (CRC) and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).
There is much to say about the CRC and the UNDRIP in relation to Indigenous children and young people’s participation in research. All research endeavours involving children and young people must uphold the comprehensive body of children’s rights set out in the CRC. These rights are numerous, therefore the task of ensuring compliance with the CRC for child related research may at first instance appear overwhelming for researchers. One vital provision in the CRC is worthy of focused attention. This is the principle articulated in article 12—children’s right to participate in ‘all matters affecting’ them. This is an instructive and appropriate starting point for researchers to base their considerations of how a research process can adhere to children’s rights principles, and in doing so create a child friendly, culturally respectful and age appropriate research environment that reduces risks participants may experience as a result of taking part in the research. Article 12 of the CRC provides that:
States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
Article 12 aligns well with the ethical considerations specific to children and young people outlined in chapter 4.2 of the National Statement. Article 12 is widely accepted as the ‘lynchpin’ of the CRC, and a foundational right upon which other rights depend and emerge. The Committee responsible for overseeing the global implementation of the CRC makes this clear when they said article 12 ‘establishes not only a right in itself, but should also be considered in the interpretation and implementation of all other rights.’
The language of this provision is strong. Note the use of compelling words such as ‘shall assure’ emphasising children’s right to free expression, and the all-encompassing subject matter to which the provision applies, namely to ‘all matters affecting’ them. These words are emphatic and when they came into force this drastically altered the pre-CRC, and post CRC, rights framework for children globally.
Involving Indigenous children and young people in research processes, particularly by non-Indigenous researchers, must be carried out in accordance with national guidelines, and in a way that upholds participant’s rights as children in accordance with the CRC, as well as their rights as Indigenous peoples in line with the UNDRIP.
In the absence of a comprehensive and unified ethical framework for engaging Indigenous children and young people in research I developed a model and detailed this in my PhD as well as in the Monash University Law Review. This model is a child rights-based approach informed by Indigenous research methodologies that uses child friendly and culturally sensitive research methods: yarning and peer-to-peer video interviewing to engage children and young people in research. This model is based on national ethics guidelines, the provisions set out in the CRC and UNDRIP, and draws on current scholarship in the area. The development of this model contributes to enhancing the ethical framework that regulates and guides the participation of Indigenous children and young people in social research.
References
Australian Institute of Aboriginal and Torres Strait Islander Studies, Guidelines for Ethical Research in Australian Indigenous Studies (2nd revised ed, 2012)
Bessarab, Dawn and Bridget Ng’andu, ‘Yarning About Yarning as a Legitimate Method in Indigenous Research’ (2010) 3(1) Journal of Critical Indigenous Studies 37
Convention on the Rights of the Child opened for signature 20 November 1989, 44 UNTS 25 (entered into force 2 September 1990)
Doel-Mackaway, Holly, ‘“I think it’s Okay … But it’s Racist, it’s Bad Racism”: Aboriginal Children and Young People’s Views about the Intervention’ (2017) 43(1) Monash University Law Review (forthcoming Sept, 2017)
Freeman, Michael, ‘Whither Children: Protection, Participation, Autonomy?’ (1994) 22(3) Manitoba Law Journal 307
National Health and Medical Research Council, the Australian Research Council and the Australian Vice-Chancellors’ Committee, ‘National Statement on Ethical Conduct in Human Research’ (2007, updated December 2013)
National Health and Medical Research Council, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (Commonwealth of Australia, 2003)
UN Committee on the Rights of the Child, General Comment No 12, ‘The Right of the Child to be Heard,’ UN Doc CRC/C/GC/12 (1 July 2009)
United Nations Declaration on the Rights of Indigenous Peoples, GA Res 61/295, UN GAOR, 61st sess, 107th plen mtg, Supp No 49, UN Doc A/RES/61/295 (13 September 2007)
Contributor
Dr Holly Doel-Mackaway | Lecturer | Macquarie Law School | Dr Doel-Mackaway’s Macquarie staff page | holly.doel-mackaway@mq.edu.au
This post may be cited as:
Doel-Mackaway H. (2017, 21 September 2017) Ethics and the Participation of Indigenous Children and Young People in Research Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethics-participation-indigenous-children-young-people-research
In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.
One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?
Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.
The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.
Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.
Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:
Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.
Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.
Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk
This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities
In May this year, a group of researchers gathered in San Jose, California, to attend a workshop on “Ethical Encounters in HCI”. HCI is human-computer interaction, an interdisciplinary field of research that covers a broad spectrum of activities, ranging from ethnographic research that aims to understand people to inform design, to lab-based studies that aim to develop and evaluate new technologies.
Why worry about ethics in HCI?
The field of human-computer interaction emerged in the 1980s, when personal computing was in its infancy. This was a time when computers sat on desktops, usually in the workplace. Initially, the aim of this nascent field of research was to create usable and efficient systems that supported people’s work activities. Much of the work in HCI at the time was conducted in laboratory settings or the workplace, with an emphasis on reducing errors and improving efficiency as people – or ‘users’ – learnt to perform tasks using computers.
Fastforward 30-plus years and computing has moved off the desktop and expanded into every realm of our lives. HCI, too, has expanded. No longer confined to the office or laboratory, HCI research has moved into the home and beyond, into settings where doing “ethical research” means more than getting your participants to sign a consent form (Bruckman, 2014). It is not unusual now for HCI researchers to conduct fieldwork in places like hospitals, schools, and residential care facilities, and to work closely with participants who might be considered vulnerable, such as people experiencing homelessness, chronic illness, or recent bereavement. Research in these settings can be rewarding and valuable, but also fraught with concerns about how to ensure the research is conducted in an ethical manner. In these settings, we can’t always predict and plan for every contingency, and there is not always a clear right or wrong way to proceed when researchers encounter a dilemma (Munteanu et al, 2015). In addition, HCI research might involve not only working closely with people to understand their lives, but also designing and implementing new technologies. We cannot always predict the impact these technologies will have on people’s lives and we have to be especially mindful of the possibility of unexpected negative effects when working in sensitive settings (Waycott et al, 2015). Social media, too, has highlighted the complexity of ethics in HCI and technology research; many researchers are now using publicly available social media posts as research data, sometimes to explore sensitive topics.
Workshop outcomes
With these challenges in mind, we gathered in San Jose to discuss the common ethical issues people have faced when doing this research and to explore possible ways of addressing these issues in the future. The workshop, held as part of the International Conference on Human Factors in Computing Systems (CHI 2016), brought together HCI researchers working in sensitive and difficult settings who wanted to communally reflect on ethical issues they had encountered in their work.
Participants included a PhD student working on designing information systems for families of children in palliative care, researchers whose work aims to preserve the “voices from the Rwanda trial” in post-genocide Rwanda, and crisis informatics researchers who analysed Twitter posts to understand the role of social media during Hurricane Sandy. Prior to the workshop, participants submitted position papers describing their “ethical encounters”, available here: https://ethicalencountershci.wordpress.com/chi-2016/position-papers-chi-2016/
The workshop aimed to provide these researchers with an opportunity to discuss the challenges they have faced, and to brainstorm potential “solutions” and ideas that might help HCI researchers navigate ethical issues in the future. Challenges included:
- tensions between meeting institutional ethics review requirements and managing situational ethical issues that emerge during fieldwork;
- managing both participants’ and researchers’ vulnerability and wellbeing;
- the temporal nature of consent (should consent be a one-off procedure, or something that we revisit throughout the research process?);
- managing participant and stakeholder expectations about the technologies we design and introduce;
- deciding what happens at the end of the project, and managing expectations around this;
- working with stakeholders, gatekeepers, organizations, and being aware of inter-organizational politics;
- deciding who gets to participate and who doesn’t; and
- dealing with sensitive (yet public) data that can trigger difficult responses for researchers, participants, and others exposed to the research
These challenges can occur in any research that involves fieldwork in sensitive settings; but they can be exacerbated in HCI because researchers in this field may not have been trained in dealing with these issues, and because designing and introducing technology into these settings adds a layer of complexity to the research.
The workshop participants identified a number of ways of providing support to HCI researchers in the future. Suggestions included looking to other disciplines (e.g., anthropology, sociology) to see what lessons we can take from them; gathering together resources and cases from previous projects (e.g., building a database of consent forms and other documents); and developing a professional advisory group to provide guidance and to promote consideration of research ethics within the HCI community. Some of these suggestions are already being achieved through initiatives like AHRECS.
References
Bruckman, A. (2014). Research Ethics and HCI. In J. S. Olson and W. A. Kellogg (Eds). Ways of Knowing in HCI. Springer
Munteanu, C., Molyneaux, H., Moncur, W., Romero, M., O’Donnell, S., & Vines, J. (2015). Situational ethics: Re-thinking approaches to formal ethics requirements for human-computer interaction Proc. CHI 2015 (pp. 105-114): ACM Press.
Waycott, J., Wadley, G., Schutt, S., Stabolidis, A., & Lederman, R. (2015). The challenge of technology research in ‘sensitive HCI’. Paper presented at the OzCHI 2015, Melbourne, Australia.
Workshop information:
https://ethicalencountershci.wordpress.com/
Waycott, J., Munteanu, C., Davis, H., Thieme, A., Moncur, W., McNaney, R., . . . Branham, S. (2016). Ethical Encounters in Human-Computer Interaction. Paper presented at the Proceedings of the 2016 CHI Conference Extended Abstracts on Human Factors in Computing Systems.
Contributor
Jenny Waycott is a Lecturer in the Department of Computing and Information Systems at the University of Melbourne. After completing her PhD at the Institute of Educational Technology, The Open University UK, Dr Waycott has worked on several projects in the fields of human-computer interaction and educational technology. Her research is broadly concerned with understanding the role technologies play in people’s learning, work, and social activities. Her recent work has focused on the design and use of social technologies for/with older adults, ethical issues in the design and use of new technologies in sensitive settings, creative uses of new technologies for social inclusion, and the use of social technologies in higher education. For more information see: http://www.jwaycott.com/
jwaycott@unimelb.edu.au
This post may be cited as:
Waycott J. (2016, 29 July) Technology research in sensitive settings: A workshop on ethical encounters in HCI’. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/technology-research-sensitive-settings-workshop-ethical-encounters-hci
As an anthropologist, the way I work has particular features which are, in my view, both empowering and paralysing. This is especially the case when working with people who define themselves or who are defined as vulnerable, and in field contexts which are challenging, difficult or unpredictable. In this post, I would like to address Prior Informed Consent procedures as an example of the ethical challenges that I need to address in my new project which aims to interact and collaborate with one of the most vulnerable populations entering the European Union today: undocumented pregnant refugees and migrants.
My ERC-funded project, entitled ‘Intimate Encounters in EU Borderlands: Migrant Maternity, Sovereignty and the Politics of Care on Europe’s Peripheries’ is a comparative study of maternity care delivery towards undocumented pregnant migrants in EU Borderlands. Research will be carried out in 7 maternity care services located in the densely crossed borderlands of 4 EU Member States. Most of the maternity care services in question are in the Mediterranean, in Italy, Spain and Greece, but two field sites are also located in Overseas France, in French Guiana and Mayotte (in South America and in the Indian Ocean respectively). All of the field sites are to be found on Europe’s external borders, in remote peripheries which have very specific social and economic identities in relation to the rest of the country. My main interest lies in studying doctor-patient interaction from a moral and biographical point of view, and in documenting life in these peripheries from the perspectives of the full range of actors involved. Ethnographic data will be collected during a 16 months long fieldwork period which will span the second and third years of the project, and which will involve all project team members (that is myself and three other researchers).
Research will be carried out through long-term participant observation of everyday life in the field locations. Commitment to the research from all research participants will have to be total, as my team and myself will have to physically move (taking our families along with us) to the field sites for the whole duration of the fieldwork. Working times will vary according to circumstances, but could involve day and night-time work, every day of the week. This kind of research requires flexibility, adaptability and resilience.
Long-term participant observation is peculiar: it is an ecosystem of its own, which may appear intense and exotic, but which often feels awkward, lonely and frustrating. Time takes on a different texture and daily routines are upset by the turns of events. Building social relations based on amity at first, and trust in the long-term with a wide range of people is not generally something which can happen overnight. For this reason I am convinced that when working with vulnerable subjects, the investment of time affords a great advantage in contributing to ethically-sound research.
Anthropologists approaching a field site have to prepare their fieldwork through an extensive, collaborative, multi-level process of introduction, presentation, authorisation and consent, which works concurrently at communal and individual level. It is very common to hear that for anthropologists fieldwork starts at home, as they slowly gather the first contacts and points of reference, through which they will seek affiliations, authorisations, permits, and translate their research objectives according to the audiences they deal with.
As anthropologists, our entry into a field context often follows a gradual scoping process based on information and presentation, which navigates several levels of leadership and authority. Only once all authorisations are cleared can fieldwork at community-level begin. And from community-level, one can approach individuals or family units. Because the personal and emotional involvement of fieldwork is so high, the social bonds which develop through long-term fieldwork are deep and long-lasting. In this context, consent in research is to be considered as a flexible, long-term commitment to the well-being of the source communities, and their regular updating on the progress of the research. This commitment can last a lifetime.
In the context of my new research project, a good proportion of the persons I will be working with belong to a highly mobile and invisible population with whom the nurture of social bonds may not be easy to maintain, to say the least. My ERC-funded project includes, among other research participants, undocumented migrants. Some of these migrants will be pregnant, others may be minors, and some will be both. This means that they represent another category of vulnerability than people I had been previously working with who belong to remote ethnic minorities (I have been working with Amerindian communities of northern Amazonia in Suriname and French Guiana since 2003). The social and political contexts in which research is carried out are always shifting, and there is no single definition of vulnerability, nor one single form of social interaction during ethnographic fieldwork. Approaching each specific social context requires good prior knowledge and a great deal of flexibility. For instance the pregnant patients I might have to interview are generally likely to have higher levels of literacy than the indigenous women with whom I was sharing the intimacy of daily life in the interior of Suriname. It may be easier to establish some form of initial communication, since there are likely to be more common cultural references. Personal, emotional and physical circumstances may however be extremely different. Moreover, whereas I have been working since 2005 in clinical contexts, these can vary greatly, and medical environments can be extremely hierarchical structures in which self-determination and agency can be challenged by the most simple acts.
In such challenging research environments, single solutions are impossible to envisage as circumstances can change very rapidly. As others have noted, ‘prior informed consent of research participants does not in itself make human-subject research ethical’ (Rosenthal 2006: 119), nor does it guarantee that all research participants and other human subjects will behave ethically. Obtaining prior informed consent in such challenging contexts first of all requires time. Having time to use the appropriate channels to seek authorisations in due course, to develop an extensive web of social contacts, and only gradually to approach the most vulnerable research participants. To ensure as independent and unbiased a process as possible, researchers in the field have to be aware of local circumstances and dynamics, and resist the temptation to rush into a challenging research environment currently at the centre of a media frenzy over what is often portrayed as an escalating EU migration crisis.
Reading a newspaper in Italy – and any other EU Member State for that matter – is a painful experience. I am constantly exposed to images of despair and tragedy unfolding in my country’s territorial waters. I often feel like rushing there to finally get started documenting the voice of those who remain invisible, but rushing is not the way to go about it, despite the climate of crisis and urgency. Ethically-sound research takes time, even more so in the midst of a crisis.
Reference:
Rosenthal, J. 2006. ‘Politics, Culture, and Governance in the Development of Prior Informed Consent in Indigenous Communities’, Current Anthropology 47(1): 119-142.
Vanessa Grotti
European University Institute
Vanessa’s EUI page
Vanessa.Grotti@EUI.eu
