Stefaan Pleysier1, Katrien Herbots2,1, Danielle Kennan3, Katrina Lloyd4
One of the assets of our Participation for Protection (P4P) study is, without a doubt, that we do not study the experiences and needs of children confronted with violence from an adult or professional perspective, but from a children’s perspective. In looking at the literature and previous research on the experiences and needs of children confronted with violence, it becomes clear that many studies were conducted onchildren, much less however withchildren. In doing so, we enable the voiceof children by involving them in different phases of the study, and giving them a central role in the construction of the methodology of the study at stake. A children’s rights and perspective is central to P4P and to all of the institutes and researchers participating in the study.
This is however not a self-evident road to follow. Compared to traditional research on children, a study with children and young people confronts us all the more with the many ethical issues related to this type of research. Moreover, the international component of the P4P study, active in 6 different countries (Austria, Belgium, Germany, the Republic of Ireland, Northern Ireland and Romania) adds to this complexity.
In this blog, we will reflect on some of the ethical issues we were confronted with in administrating the school survey to a general sample of pupils and students, and conducting the working groups with specific groups of vulnerable children and young people. We will start off with three cases, dilemmas if you wish, where we were confronted with the complexity of doing research with children in a real life context. Following this, we will ask ourselves whether ethical codes or guidelines, or a submission and subsequent approval by the ethics committee(s) can help us in these particular cases or dilemmas. Over the last two decades, ethical codes, considerations and committees overseeing research in the social sciences have continued to gain importance, especially when conducting research with vulnerable groups. We will argue that these codes, for a specific reason, tend to emphasize ‘protection rights’ as opposed to children’s ‘participation rights’, and will promote a different, more reflexive and relational approach to research ethics (Lauwers & Van Hove, 2010: 350).
Three cases to start with
The first case relates to the school surveys we administered in the first phase of our P4P project. After consideration and approval by the ethics committee, we used a passive informed consent (opt-out) for parents. As the surveys were administered at school, we gave a large degree of freedom to schools in distributing these informed consent letters to parents. Upon visiting the schools, however, it was not always clear how and to what extent all parents really had seen the information leaflet with the attached form enabling parents to opt out and made an informed decision not to opt-out. This experience raises a number of questions related to the meaning and value of the passive informed consent of parents. Can we rely upon schools to distribute informed consent forms to parents? Can we rely upon children if they say their parents saw the form and were okay with them participating in the study? Is the use of forms and the information we provide on the survey appropriate communication bearing in mind the large differences in the socioeconomic status of pupils and their parents? Should we perhaps switch to an active informed consent by parents, knowing this might lead to some children who would like to participate but for some reason do not have the opt-in consent of their parents? Should a different approach be adopted for different age groups?
In a second case, again related to passive informed consent, we were indeed actively informed by some parents, using the opt-out form, deciding that their children should not participate in the survey. After informing schools and/or teachers about this, we witnessed that some children (aged 13, 14…) were taken away from class ‘because their parents did not want them to participate in the study’. In some cases they were subsequently given a ‘different task’. Here, parental informed consent was demonstrably respected, but opened up an array of new queries. Is it self-evident to give priority to a parental opt-out over and above children’s informed consent and willingness to participate? What about the children’s right to participate and voice their opinion? What about potential stigmatization when excluding children from participating in a survey because that is what their parents want? Or when taking children out of the classroom during the survey, giving them ‘a different task’, even though it is the researchers that have imposed on their routine class time?
A third and final illustrative example refers to the second part of the P4P study where we organized focus groups with vulnerable groups. In one of these focus groups, with girls in a juvenile justice institution, we asked for informed consent from the girls at the start of each of the two sessions. So, when starting the second session one girl, clearly stressed, she ‘really did not want to participate’. Apparently, the girls were making meatball soup just before, but she was asked to leave by the youth practitioner at the centre since she had participated in the first focus group of the study. As she chose not to participate now, in line with our ethical standards, we said to the girl that she could leave if that was her decision -which she did. Afterwards, it turned out she was also not allowed to go back to the original class to finish the soup as she failed to keep her previous ‘promise’ to participate in the study. This was all the more painful as we heard that upon entry in the institution, the girl stated she was vegetarian because she heard that meat dishes at the institution were bad. Since then, she hadn’t eaten meat and was very much looking forward to the meatball soup…
So, in all three cases we operated within the standards of our ethics committee approval. Formally, there are no ethical issues or concerns; however, in the practice of doing research, we were clearly confronted with a number of situations and questions that made us reflect on the ethics of doing research with children and young people, perhaps over and beyond ethical codes and committees. Ethical research is evidently not fully covered and guaranteed when gaining ethical approval. Ethical questions may also arise and perhaps even more so during the course of (‘doing’) the research. Ethics are therefore situational by nature. Ethically sensitive issues and ongoing, unanticipated challenges may, beyond gaining approval, occur in the moment as research unfolds (Guillemin & Gillam, 2004; Reid et al., 2018: 70).
The origin of ethical codes
Ethical codes, and subsequent committees, have however a long and significant history. More specifically, we see them emerging in the second half of the 20thcentury with a specific and logical aim, given the post WWII context, to protect the rights of research subjects in social, behavioural and biomedical research (Singer, 2008). The Nuremberg Code (1947) was an immediate answer to the serious physical harm and psychological distress caused to human subjects because of medical experiments during the war (Powell, Fitzgerald, Taylor & Graham, 2012). It was the start of an ongoing development of ethical codes and guidelines, originally aimed at medical research and soon afterwards adopted for research in social sciences.
Following the Nuremburg Code, the Helsinki Declaration and the Belmont Report are often referred to as landmarks in the development of ethical principles for research. The Helsinki Declaration (1964), adopted by the World Medical Assembly in the aftermath and increasing awareness of the violations and atrocities of Nazi Germany, defined ethical responsibilities both of physicians to their patients as well as to the subjects of biomedical research (Singer, 2008: 79; Powell et al., 2012: 8). The declaration specifically urges for special attention and protection for vulnerable subjects, for ‘those who cannot give or refuse consent themselves, for those who may be subject to giving consent under duress, for those who do not benefit personally from the research and for those for whom the research is combined with treatment’ (Singer, 2008: 79). The debate on assent/consent when involving minor children in research often refers to these stipulations in the Helsinki Declaration.
The Belmont Report (1979) advanced three principles for research with human subjects: beneficence, justice and respect (Singer, 2008: 80). Beneficence refers to the importance of minimizing possible harms and maximizing benefits for research subjects. The principle of justice proscribes a fair balance between those who bear the burdens of research and those who benefit from it. Respect refers to the importance of informing potential respondents to the level that they are able to knowledgeably participate. This principle is translated in the ethical requirement to obtain informed consent from participants (Singer, 2008: 80).
Protect the vulnerable
As mentioned, the structural misuse of human subjects in medical and psychological research and experiments in wartime was a clear and unmistakable cause for change in research practices with human subjects. The fact that also during the second half of the twentieth century several clear violations of research subjects’ rights occurred, strengthened the concern and need for ethical codes, and the search for stronger protection of research subjects. One frequently mentioned illustration of such a misuse of research subjects was the Tuskegee syphilis study that ran until the early 1970s in the US (Singer, 2008: 83). Poor black men were enrolled in this study with the aim to observe the natural course of syphilis. The subjects ‘were led to believe that they were receiving treatment; in fact, no treatment was offered them even after penicillin, a highly effective treatment, became available, and most of them died’ (Singer, 2008: 93).
According to Trussell our understanding of ethical issues in research to a large extent reflects the ‘paradigms and practices’ within a particular socio-historical context’ (Trussell, 2008 in Powell et al., 2012: 8). Given the specific historical context of origin, it is not surprising that ethical guidelines following these landmark codes – Nuremberg, Helsinki, Belmont – have as a foremost concern the need to protect research subjects from malicious research practices, especially if these subjects can be classified as ‘vulnerable’. The Helsinki Declaration as already highlighted specifically emphasises the importance of protecting categories of vulnerable respondents. For obvious reason, children and young people are often singled out as ‘vulnerable’ and requiring special protection and care. As with other vulnerable groups (e.g. refugees, minorities, disabled or elderly persons…), children and young people are believed, because of their age, ‘to be unable to make fully informed, voluntary choices about research participation, and therefore require special procedures either to prevent coercion or to protect them from risk of harm, or both’ (Singer, 2008: 88).
In their international literature review on ethical issues in undertaking research with children and young people, Powell et al. (2012: 8) state that ethical considerations in doing research with children is ‘embedded within particular contextualised understandings of children and childhood’. The protection of children as vulnerable research subjects is indeed in line with a traditional view of, and discourse on, children as being ‘passive, incomplete and incompetent, not fully human until they reach the state of adulthood’ (Coyne, 2010: 229). From this angle, it is assumed that children lack the cognitive maturity and moral development needed to fully understand and therefore participate in research in an informed way. It has led the Royal College of Paediatrics and Child Health to reiterate the need for parental consent for all children aged under 18 (Coyne, 2010: 229; Department of Children and Youth Affairs, 2012).
Children as ‘beings’ vs. ‘becoming’
Discussions about child participation are underpinned by the perspectives a society (or discussants) holds towards children. These essential perspectives, which frame arguments and discussions about children’s participation, cut across academic disciplines and all kinds of research contexts (Herbots & Put, 2015: 160). Childhood studies and a children’s rights framework challenged the traditional welfare view of children as ‘becoming’ in favour of viewing children as social actors and competent ‘beings’, emphasizing the importance of listening to and voicing children’s views (Powell et al., 2012: 9; Coyne, 2010). This perspective of children as ‘beings’ implies that we should see children as capable agents, able to understand and, decide whether they want to participate in research or not (Lundy & McEvoy, 2012). Indeed, the UN Convention on the Rights of the Child (1989) advocates ‘the right of every child to self-determination, dignity, respect, non-interference and the rights to make informed decisions’ (Coyne, 2010: 235). Children should be able to freely express opinions and have these taken into account in any matters that affect them (Article 12, UN Convention of the Rights of the Child). It has led some to query the requirement of parental consent for all research involving children, given its exclusionary consequences at times and its failure to recognise the competence of older children. (Coyne, 2010; Kennan, 2015).
This is of course not to say that protecting children from harm should not be a genuine concern. However, it does imply that a strong protectionist discourse can ‘deny children the right to express their views on matters of concern to them’, and ultimately even gate-keep children out of research because of a potential risk (Powell et al., 2012: 2, 24). The dichotomy in thinking about children (Lauwers & Van Hove, 2010) is therefore transcended by a more pragmatic third dimension which combines these two perspectives in recognizing the child as a subject of rights and simultaneously as a subject of guidance and protection (Hemrica & Heyting, 2004; Röbäck & Höjer, 2009).
A ‘hypervigilant’ approach, backed by a restrictive ethical framework stemming from medical and health research, could lead to social science researchers ‘avoiding studies with children who may be regarded as particularly vulnerable, leading to under-representation of those children’ (Powell et al., 2012: 47). So a blind adherence to e.g. the parental consent requirement for children’s participation in research as an ethical standard, might very well result in the denial of the ethical principle and children’s right of respect for the child’s competence, generally assessed by the level of understanding, maturity and/or age, and the capacity for autonomy (Herbots & Put, 2015: 161; Coyne, 2010: 235).
More generally, Graham & Fitzgerald (2010: 139; Powell et al., 2012: 47) tend to see a paradox where indeed we see from a certain perspective a growing recognition of ‘the agency of children and their capacity to participate’, while we seem to witness at the same time ‘an increasingly ‘nervous’ regulatory environment in relation to ethics committees and children’s involvement in research processes’. Furthermore, an approach where we see children as competent agents, where we actively negotiate and balance the need to protect children and their right to participate and make informed decisions, indeed ‘questions the assumptions that ethics can be reduced to codified sets of principles, and that following these systematically will make research more ethically sound’ (Powell et al. 2012: 9).
A reflexive and relational approach to research ethics
Therefore, we follow Lauwers & Van Hove (2010) and argue for an alternative approach to research ethics which is less focused on rules and regulations and more (self)reflexive and relational by nature. In a (self-)reflexive approach the researcher questions on the one hand his/her motivation, assumptions and interests and recognizes on the other hand ‘knowledge as constructivist, developed throughout the research process and contingent upon existing understandings and beliefs’ (Reid et al., 2018: 70). A relational approach to ethics ‘emphasizes the necessity to engage with others’ and the importance to give the other ‘the opportunity to give meaning’. It also ‘recognizes power-asymmetry as an inherent feature of social research’ (Lauwers & Van Hove, 2010: 341). Given the importance they attach to respect and care as key characteristics in doing research with children, Lauwers & Van Hove (2010) promote the incorporation of a relational ethics approach from the outset of a research project. This approach is very much akin to our P4P project and the central position allocated to the Children and Young People Advisory Groups (CYPAG’s) in designing the methodology of the project.
In doingresearch, research ethics is an ‘ongoing process of questioning, acting and reflecting’, rather than a set of straightforward general rules of conduct (Powell et al., 2012: 9). This implies that the questions and dilemmas we raised at the outset of this contribution do not necessarily need to be answered. Ethics is about asking these questions, about constantly questioning our own perspectives and frames of references, being sensitized to the ethical dimensions of research and exploring and examining the dilemmas we are confronted with; it ‘is about helping researchers to become aware of hidden problems and questions in research, (…) though it does not provide simple answers’ (Guillemin & Gillam, 2004: 278; Alderson, 2005: 29; Powell et al., 2012: 10). This approach therefore questions to some degree the ‘utility of ethical guidelines’ for it is indeed ‘futile to believe that there could ever be one right thing to do’ (Horton, 2008: 368). Horton also argues, and we believe he is right in doing so, that the conception of ethical guidelines and rules as ‘neatly, rationally applied to a given situation’ is almost by definition at odds with the ambiguity, ‘hurly-burly’ and ‘forever imperfect realities’ of research practice (Horton, 2008: 369). Here, Horton refers to a notion of research ethics that acknowledges both research participants and researchers as ‘vulnerable, fallible, emotional, moody, embodied beings’ (Horton, 2008: 379). Research, and ours is by far an exception to that, indeed does not take place in a vacuum, nor does it follow the ideal and prescribed path.
A reflexive and relational ethics approach is in that sense indeed closer to ‘what really happens in the field during the research process’. In his book Postmodern Ethics, Zygmunt Bauman aptly argues that:
‘Human reality is messy and ambiguous – and so moral decisions, unlike abstract ethical principles, are ambivalent… The truth of the matter is that the ‘messiness’ will stay whatever we do or know, that the little orders and ‘systems’ we carve out in the world are … as arbitrary and in the end contingent as their alternatives’
(Bauman, 1993: 32-33; Lauwers & Van Hove, 2010: 352).
Bauman, Z. (1993). Postmodern Ethics. Oxford: Blackwell.
Coyne, I. (2010). Research with children and young people: the issue of parental (proxy) consent. Children & Society, 24, 227-237.
Department of Children and Youth Affairs (2012). Guidance for Developing Ethical Research Projects Involving Children. Dublin: Irish Department of Children and Youth Affairs.
Guillemin, M. & L. Gillam (2004), Ethics, reﬂexivity, and “ethically important moments” in research. Qualitative Inquiry, 10, 261–80.
Hemrica, J. & F. Heyting (2004). Tacit notions of childhood. An analysis of discourse about child participation in decision-making regarding arrangements in case of parental divorce. Childhood, 11(4), 449–468.
Herbots, K. & Put, J. (2015). The Participation Disc. A Concept Analysis of (a) Child(’s Right to) Participation. The International Journal of Children’s Rights, 23(1), 154-188.
Horton, J. (2008). A ‘sense of failure’? Everydayness and research ethics. Children’s Geographies, 6(4), 363-383.
Kennan, D. (2015). Understanding the Ethical Requirement for Parental Consent When Engaging Youth in Research. In S. Bastien & H.B. Holmarsdottir (Eds.), Youth ‘At the Margins’: Critical Perspectives and Experiences of Engaging Youth in Research Worldwide (pp. 87-101). Rotterdam: Sense Publishers.
Lauwers, H. & G. Van Hove (2010). Supporting the participation rights of children in a sensitive research project: the case of young road traffic victims. International Journal of Children’s Rights, 18, 335-354.
Lundy, L. & L. McEvoy (2012). Children’s rights and research processes: Assisting children to (in) formed views. Childhood, 19(1), 129-144.
Powell, M.A., R.M. Fitzgerald, N. Taylor & A. Graham (2012). International literature review: ethical issues in undertaking research with children and young people, for the Childwatch International Research Network, Southern Cross University, Centre for Children and Young People, Lismore NSW and University of Otago, Centre for Research on Children and Families, Dunedin, NZ.
Reid, A.-M., Brown, J.M., Smith, J.M., Cope, A.C & Jamieson, S. (2018), Ethical dilemmas and reﬂexivity in qualitative research. Perspectives on Medical Education, 7, 69-75.
Röbäck, K. & Höjer, I. (2009). Constructing Children’s Views in the Enforcement of Contact Order. International Journal of Children’s Rights,17(4), 663–680.
Singer, E. (2008). Ethical issues in surveys. In E. D. de Leeuw, J. J. Hox, & D. A. Dillman (Eds.), International handbook of survey methodology(pp. 78-96). New York/London: Lawrence Erlbaum Associates.
1 Leuven Institute of Criminology (LINC), KU Leuven
2Children’s Rights Knowledge Centre (KeKi)
3UNESCO Child and Family Research Centre (UCFRC), NUI Galway
4Centre for Children’s Rights, QUB