Children and adolescents who participate in research

Elisabeth Backe-Hansen is a Senior Researcher Emerita at NOVA.

Introduction

“Childhood is not homogeneous, not least because of the evolving capacities and physical growth of human children. It is perhaps the most heterogeneous stage in the life cycle. Within childhood, age differences possibly outweigh gender, ethnicity, religion and other discriminatory practices” (Beazley et al., 2009, page 368).  

The UN Convention on the Rights of the Child was adopted in 1989, ratified by Norway in 1991 and incorporated into Norwegian human rights law in 2003. A central pillar of the Convention is children’s right to participate. Article 12 of the Convention, often called the “democracy article,” 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.” In 2014, children’s right to participation was incorporated in a dedicated provision of the Norwegian Constitution, mirroring the language of Article 12 of the Convention. This means children’s right to participation is strongly upheld in Norwegian law, including their right to participate in research. This right can be further inferred from three other articles in the Convention (Beazley et al., 2009). The first is Article 3, which establishes the best interests of the child “as a primary consideration” in all decisions affecting them. The second is Article 13, which guarantees the child the right to freedom of expression. The third is Article 36, which protects the child against all (other) forms of exploitation prejudicial to any aspects of the child’s welfare. was adopted in 1989, ratified by Norway in 1991 and incorporated into Norwegian human rights law in 2003. A central pillar of the Convention is children’s right to participate. Article 12 of the Convention, often called the “democracy article,” 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.” In 2014, children’s right to participation was incorporated in a dedicated provision of the Norwegian Constitution, mirroring the language of Article 12 of the Convention. This means children’s right to participation is strongly upheld in Norwegian law, including their right to participate in research. This right can be further inferred from three other articles in the Convention (Beazley et al., 2009). The first is Article 3, which establishes the best interests of the child “as a primary consideration” in all decisions affecting them. The second is Article 13, which guarantees the child the right to freedom of expression. The third is Article 36, which protects the child against all (other) forms of exploitation prejudicial to any aspects of the child’s welfare. 

The Convention defines a “child” as every human being below the age of eighteen, acknowledging that children can express their views irrespective of their age, albeit in widely differing ways. As pointed out in Guidelines for Research Ethics in the Social Sciences and the Humanities (NESH, 2023), a child’s maturity cannot be determined solely by their biological age. This calls for researchers to have sufficient understanding of children’s development to be able to tailor the goals and methods of their research to align with the child’s age and stage of development. 

The ethical issues that are raised by involving children and adolescents in research can be grouped into a few core areas: Competence to grant consent, age and recruitment procedures for participating in research, potential benefits and harm of the research, confidentiality and the duty to notify. 

Competence to grant consent, age and recruitment for research

In principle, egal competence to consent is granted only when an individual reaches the age of majority. Consequently, the general rule for research involving children is that their parents or guardians must consent, and that children and adolescents then agree or refuse to participate. [1] 

However, legal competence cannot be entirely separated from the ability to understand what the research entails. This makes the question of whether children and adolescents are truly capable of providing informed consent to participate in research extremely important, particularly given the growing focus on children’s right to participate and the broader emphasis on user involvement currently prevalent in many areas of society. This naturally leads to the question: at what age should children and adolescents be able to consent on their own behalf? 
 
According to Section 17(b) of the Norwegian Health Research Act (Available as an unofficial English version here), individuals aged between 16 and 18 generally have the competence to consent. However, consent from parents or guardians is still required for research involving minors in this age group if it includes physical interventions or clinical trials. 
 
In social science research, the assessment of competence to consent will depend on the nature of the research and the type of data that may be collected. For example, in school-related research, adolescents aged 15 or older can often consent independently to participate in smaller research studies involving non-sensitive data. However, for projects that involve the processing of special categories of personal data, participants must generally be 16 or older. [2] The age threshold for self-determination is based on a discretionary overall assessment of the specific research project, focusing on whether the young person fully understands what participation entails and can safeguard their own rights. 

Some research projects allow children and adolescents to consent independently, while giving parents or guardians the option to opt out by notifying the project leaders or else providing “passive consent”. (See, for example, Ung i Oslo 2023, NOVA.) 

If research involves areas like child welfare or other contexts where children and adolescents may face increased vulnerability, stricter requirements apply to the research due to the risk that the participants may be subjected to undue strain. Research involving vulnerable groups should only be carried out with such groups if the issues cannot be addressed through alternative methods, with increased requirements ensuring that the research is thoroughly justified and sufficiently detailed in terms of design, rights protection and ethical safeguards. In such cases careful judgement may be required to determine whether participants aged 16 to 18 can provide consent on their own. 

What about children under 16? In 2017, a regulation was introduced granting children aged 12 to 16 the right to independently consent to participate in research to research involving health data in certain cases. However, there are strict requirements that the societal benefits must clearly outweigh any potential disadvantages participation might pose for the child, [3] and it must be assumed that the project could not feasibly be carried out based on parental consent because it might uncover issues parents have a vested interest in concealing, such as violence or abuse (Ministry of Health and Care Services, 2017). Additionally, specific contingency measures must be in place to address participants’ potential healthcare needs and other related concerns. Similar provisions are outlined in Guidelines for Research Ethics in the Social Sciences and the Humanities (NESH 2023, Section 18). 

In such cases, it will be especially important to ensure that researchers can present a compelling rationale for their project, including whether the issues in question are already adequately understood, even if the researchers have an individual interest in exploring them further. 

The way researchers weigh the benefits and value of a study against its potential harm often depends on how they balance children’s competence against their need for protection. The Convention on the Rights of the Child accords participation and protection equal importance. It could be argued that protecting children may stray into overprotection if it denies them the chance to voice their opinions on issues they wish to address. At the same time, children are all different, and researchers cannot assume that children in challenging situations will automatically want to participate just because they are allowed to. When involving potentially traumatised children or adolescents in research without the protection of competent adults, it is particularly important to carefully consider how children are recruited, to ensure that researchers have the necessary competence to execute the project and to safeguard participants’ right to opt out or withdraw once the project has started. It is important to remember that the right to participate also includes the right to refuse to participate, or to withdraw from participation (Lundy, 2007). 

As highlighted earlier, research participation can be viewed as a right for children and adolescents because it offers them the chance to contribute to knowledge that directly impacts their lives and because they bring unique perspectives on what it means to grow up in today’s world. In practice, this involves balancing three factors: the legal capacity to provide consent, a child or adolescent’s ability to consent on their own behalf (i.e. based on their age and maturity), and the understanding of parents, guardians or other gatekeepers regarding the potential value and importance of participating in the research. The growing focus on participation, which reflects modern views on children and adolescents’ competence, might lead parents or guardians to consult their children about their preferences before deciding whether to grant consent. Parents or guardians might even become more open to letting children decide for themselves, even if they do not immediately appreciate the benefits of participating. 

Potential benefit and harm of the research 

Benefit and harm must always be weighed in relation to both the topic and methodology applied when children participate in research. In general, we can say that the more harmful or unpleasant the research is because of the topic or procedure, the greater the benefit the researcher must be able to demonstrate for the participants or for society in general. The NESH guidelines establish that the well-being and integrity of children must always take precedence over the interests of science or society. In social science research involving children, participation often does not directly benefit the individuals involved, but the findings may benefit others in the future. 

Over the past thirty years, survey-based research involving children and adolescents has become increasingly common in the social sciences. Participation in social science research involving children and adolescents is seldom very harmful, but doubts will nevertheless arise that may either indicate that the research should not be carried out as intended or that special measures should be implemented to minimise any harm. For example, researchers frequently ask adolescents about sensitive topics such as substance use, rule-breaking, sexuality or sexual harassment. Because of this, it is also common to establish some form of safety net, such as providing participants with contact information for support services should they need help. Since these surveys are typically anonymous and conducted in schools, there are few alternative ways to address such concerns. Participants are also informed that they can skip any questions they are uncomfortable answering, which often results in significant variation in response rates across different questions. 

In the Norwegian part of Children’s Worlds, an extensive international study involving children aged 8 to 13 across about 50 countries, participants were asked for feedback on the survey. The most frequent comment from Norwegian children was that the survey was boring. This feedback was useful for the researchers (Backe-Hansen, 2014). When designing surveys for children and adolescents, it is essential to tailor questions to the age of the participants. This could for example involve creating multiple versions of the surveys, adjusted both in content and approach. It is important to ensure participants have every opportunity to fully engage with and understand the questions, as this will not only enhance data quality but also provide a more positive experience for the participants. 

Qualitative methods, such as interviews and observations, are also commonly used in social science research involving children. In light of regulations allowing 12 to 16-year-olds to consent to research independently, Øverland (2018) suggests that discussing difficult experiences, like abuse, can actually empower children, provided that the conversation takes place in a safe and calm environment, markedly different from the context of the abuse. Such a setting requires researchers to be empathetic, sensitive to the child’s cues and careful to establish protective boundaries. Ensuring that researchers have this expertise is the responsibility of the research project. In other words, when done properly, this approach not only minimises harm but also increases the potential benefits. Even for topics that can be considered to be less sensitive, researchers conducting qualitative studies should follow the same principles and remain flexible in how they engage with participants. 

But what happens if the researcher is unaware of a child or adolescent’s past experiences, and the interview unexpectedly reveals instances of abuse, neglect or serious life challenges? If this happens during qualitative interviews, researchers may quickly feel the need to help the child or adolescent decide what steps to take next, if that is what they want. It is then necessary to investigate whether they have someone they can talk to whom they trust, as well as have knowledge of the support system where they live and how to contact them. Researchers must also carefully consider their potential duty to notify the child welfare services or the police (see the section on the duty to notify below). Importantly, researchers must draw a clear line between their role as researchers and that of a therapist, beyond any therapeutic benefit that might naturally arise from discussing difficult experiences. In such cases, the benefit to the child may be less clear, and the risk of harm may not be as easily mitigated. 

Both of these contexts for researching children and adolescents who have experienced abuse or violence necessitate recruitment through various types of gatekeepers, even when the children are legally capable of providing consent on their own behalf. In contrast, if we want to carry out an anonymous survey, the aim will be to learn more about the prevalence and patterns of abuse and violence against children and adolescents while ensuring that the researchers cannot subsequently identify individual participants. Allowing children and adolescents from the age of 12 to consent on their own behalf in these cases is justified on the grounds that such studies often address topics that parents might have an interest in concealing. It is genuinely important to identify instances of abuse as early as possible, since this provides significant value for developing policies and interventions, even if it does not directly benefit the children involved. One consideration in such cases is how often it is reasonable to conduct such studies, or whether existing data can be utilised instead. It is also important not to overuse the argument about parents or guardians’ self-interest, especially since Section 1 of the regulation explicitly allows children aged 12 to 16 to independently consent to research on health data in a limited number of clearly specified projects. In other words, we are not talking about giving researchers carte blanche to include the youngest children in research without parents or guardians’ consent, and besides, the provision applies solely to health research. 

Advances in technology have opened up new ways to engage children and adolescents in research. For instance, researchers can post on social media and invite participants to answer questions. In an era where recruiting participants for research is becoming increasingly difficult, this approach provides an opportunity to reach children and adolescents on platforms they are extremely familiar with, making it easy to participate while maintaining anonymity. However, this method makes it difficult to ensure that the participants or their responses are representative, and results must be interpreted with this in mind.   

Children and adolescents have been completing surveys on computers, whether at home or in school for a number of years now, and this approach has gained increasing acceptance over time. More recently, mobile-based surveys have been introduced as a more direct option that allows participants to respond whenever it suits them. Mobile surveys also make it even easier to ensure answers are treated confidentially, addressing concerns about children and adolescents looking over each other’s shoulders when, for example, completing surveys on a computer in a classroom setting (see also Baugerud in Stang et al., 2023). However, when surveys are completed privately, there is no guarantee that the intended recipient of the invitation is the one actually answering.

Confidentiality, the duty to notify and the duty to prevent a criminal offence

In anonymous research, individual responses cannot be traced back to participants or shared. However, in studies involving direct contact between researchers and participants, which is common in research with children and adolescents, issues around sharing information can arise. In these cases, the principle of confidentiality applies, even when dealing with the child or adolescent’s parents or guardians. For example, a parent might request a “report” on what their child has shared, while the child may wish to keep that information private. In such cases, the child’s wishes should prevail. Therefore, it can be helpful to talk with the child or adolescent about what, if anything, should be passed on and to respect their wishes. Adolescents, in particular, may refuse to speak with a researcher unless they are guaranteed confidentiality, a promise that must be honoured. On the other hand, a child or adolescent might see the researcher as someone who could help them resolve a problem, perhaps by sharing their concerns with the appropriate parties (Fossheim and Ingierd, 2013).

The basis for a strong connection between the researcher and the participant lies in the participant’s trust in the researcher (see also Skilbrei, 2013). When conducting research with children and adolescents in high-risk situations that might trigger the duty to notify child welfare services, it is important for researchers to clearly explain what circumstances could lead to a report being made in terms the participant can understand. In such situations, researchers risk that the participant partially or fully withdraw their consent, which is entirely within their rights.  

Such situations could become even more problematic, if unforeseen and unexpected information emerges during an interview, such as disclosures of violence, abuse, emotional mistreatment or severe neglect. Researchers working on behalf of public institutions are subject to the same obligations as public employees. Under Section 13-2 of the Norwegian Child Welfare Act (only available in Norwegian), in certain circumstances they have a duty to notify concerns to child welfare services without undue delay if, for example, there is reason to believe that a child is experiencing serious neglect or abuse. [4] From the participant’s perspective, such a report can feel like a betrayal of trust. In these cases, it will be particularly important to talk with the child or adolescent about whether child welfare services are already involved, whether they are in contact with other people in the support system or whether there are any trusted adults like parents or others that can assist them. It is also crucial for researchers to have sufficient knowledge about child welfare services to be able to explain to the child or adolescent what a report involves and what support child welfare services can or cannot offer. 

Another consideration is the legal duty to notify the police if information that requires disclosure to prevent a criminal offence comes to light (the duty to prevent a criminal offence). Under Article 196 of the Norwegian Penal Code, this duty applies to everyone and overrides confidentiality obligations. [5] It is triggered when there is knowledge or a strong likelihood that a criminal offence will occur. Preventive actions could include notifying the police, contacting child welfare services or taking other steps to stop the offence (see The duty to avert criminal acts). For a more detailed discussion on the dilemmas surrounding researchers’ duties to report and avert a criminal offence, see Fossheim and Ingierd (2013). 

Conclusion

This article begins and ends with children and adolescents’ rights, not least because several authors regard ethical considerations and rights as interrelated. Bell (2008) points out that children’s rights exist when research interests and children’s everyday lives intersect, and they continue throughout the research process and beyond. Children and adolescents are particularly vulnerable as research participants, a reality acknowledged in Section 18, entitled “Protection of children”, of the Guidelines for Research Ethics in the Social Sciences and the Humanities (NESH 2023). An ethical imperative to treat children as moral actors in their own right requires researchers to acknowledge children and adolescents as participants, but with safeguarding and if necessary, protection rights as participants in the same research. In this context one solution could be to develop research guidelines that integrate human rights considerations, thereby promoting a rights-based approach to research about and with childhood, children and adolescents. 

This article has been translated from Norwegian by Cristina Pulido Ulvang, Akasie språktjenester AS. Updates translated by Samtext AS.

Footnotes

[1] See NESH (2021, Section 17) on Impaired capacity to consent. 

[2] https://www.datatilsynet.no/personvern-pa-ulike-omrader/skole-barn-unge/samtykkje-fra-mindrearige/ (Only available in Norwegian) 

[3] For more details on balancing benefits and harm, see Section 18 of the Norwegian Health Research Act. 

[4] Section 13-2: The duty to notify to child welfare services. This provision applies when there is reason to believe a child is, or will be, subjected to abuse, severe neglect, inadequate daily care or exploitation. It also includes cases involving life-threatening or serious illnesses or harm that have not been investigated or treated, or cases involving a lack of necessary education for children with disabilities or special needs, or in cases where a child has displayed severe behavioural issues or where there are grounds to believe that a child is or will be a victim of human trafficking.  

[5] For more information on the duty to prevent a criminal offence, see the Duty to prevent a criminal offence – https://plikt.no/?lang=en 

References 

Backe-Hansen, E. (2016). What the children thought: Some methodological and ethical issues in comparative child research. In T. Liefard & J. Sloth-Nielsen (eds). The United Nations Convention on the Rights of the Child. Taking Stock after 25 Years and Looking Ahead. Leiden: Brill Nijhoff, 634-654. 

Beazley, H., Bessell, S., Ennew, J. & Waterson, R. (2009). The right to be properly researched: Research with children in a messy, real world. Children’s Geographies, 7(4), 365-378. 
Bell, N. (2008). Ethics in child research: rights, reason and responsibilities. Children’s Biographies, 6, 7-20. 

Data Protection Services for research 

FOR-2017-06-28-1000. Forskrift om barn mellom 12 og 16 år sin rett til selv å samtykke til deltakelse i medisinsk og helsefaglig forskning  

Fossheim, H. & H. Ingjerd (eds). (2013). Forskeres taushetsplikt og meldeplikt. Oslo: De nasjonale forskningsetiske komiteer.  

LOV-2005-05-20-28: The Penal Code

LOV-2008-06-20-44: Lov om medisinsk og helsefaglig forskning (helseforskningsloven) Act on medical and health research (the Health Research Act) (Only in Norwegian. Available as an unofficial English version here). 

LOV-2021-06-18-97: Lov om barnevern (barnevernsloven) The Child Welfare Act (only in Norwegian). 

Lundy, L. (2007). Voice is not enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child. British Educational Journal, 33, 6, 927-942. 

NESH (2021). National Committee for Research Ethics in the Social Sciences and the Humanities (NESH) (2023). Guidelines for Research Ethics in the Social Sciences and the Humanities. 

NOVA (2023). Ung i Oslo 2023. Ung i Oslo 2023 - OsloMet. 

Skilbrei, M.-L. (2013). Hva betyr taushet? Taushetsplikten og varslingsplikten i vanskelig farvann. I Fossheim, H. & H. Ingjerd (eds). (2013). Forskeres taushetsplikt og meldeplikt. Oslo: De nasjonale forskningsetiske komiteer, s. 51-66. 

Stang, E. Gording, G. A. Baugerud, E. Backe-Hansen & M. Rugkåsa (2023). Samvær i praksis. En forskningsbasert undersøkelse av samværsordninger i barnevernet. Hovedrapport fra prosjektet «Samvær etter omsorgsovertakelse». Oslo: OsloMet – Storbyuniversitetet. Skriftserie no. 1, 2023.

United Nations Convention on the Rights of the Child. 

Øverlien, C. (2018). Voldsutsatte barn må bli hørt i forskningen. Forskning.no.