Seeking informed consent from children and young people (as well as from their parent/carer) is central to an ethical, children’s rights approach to research. Informed consent signals respect for children’s dignity, their capability to express their views and their right to have these heard in matters that affect them.
Informed consent involves a number of important aspects:
- Children must have an understanding of the research and their participation within it;
- Consent should be an explicit agreement (typically involving the researchers(s), the child, their parents/carers and sometimes their institution / community leaders);
- Children’s consent must be given voluntarily (and without coercion); and
- Consent should be renegotiable, so that children can withdraw at any stage of the research process.
Below is an updated, overview of the ERIC approach to informed consent in research involving children. You can also download a pdf of the original ERIC guidance on this topic. It is available in English, français, español, 한국어, Türkçe and Bahasa Indonesia.
What is informed consent?
Informed consent is an explicit agreement that requires participants to be informed about, and have an understanding of, the research. In essence, then, informed consent can be understood as comprising two parts: an informing part and a consenting part (Mayne, Howitt & Rennie, 2016).
The informing aspect reminds of the educative nature of the informed consent process. It is about providing children with enough clear and appropriate information (taking into account age, ability and context) so that they can make an informed decision about whether or not to take part. This ‘informed’ aspect is underpinned by children’s right to ‘seek, receive and impart information’ (UNCRC Article 13) (Lundy, McEvoy & Byrne, 2011; Lundy & McEvoy, 2012). Ideally, the ‘informing’ process also offers opportunities to ask questions and discuss concerns; it opens up dialogue about the research, and what participation might involve, that can continue throughout the research process.
Children need to be informed about a range of concepts related to the research process. Some are common to most projects, such as:
Children will also need project-specific information, such as:
- What is this research about? (And, perhaps, why does it need to be done?)
- What does participation involve (methods, duration…)?
- Are there any benefits or risks related to taking part?
- Other practical project details (such as dates, location etc.).
Consenting to research participation is an explicit act of agreement that begins at the start of the research process. It is underpinned by children’s right to have their perspectives heard in ‘matters that affect them’ (UNCRC Article 12). Initial consent from children can involve a signature, but may also involve a fingerprint, circling an ‘emoji’, adding a sticker, or ticking an appropriate box, or another approach suited to their communication abilities and the research methods of the study. Consideration should be given to environmental and relational pressures that might influence children’s decisions regarding participation (in schools, in families, in communities etc.). Children should also be informed of their right to dissent, both initially and at any time throughout the research process. They may require support to voice their dissent and researchers need to remain attuned to body language and other non-verbal cues (Bourke & Loveridge, 2014).
It is important to remember that children’s understanding of research, and their participation within it, will evolve as a study progresses. Revisiting aspects of informed consent towards the end of a study, may be more ethical and respectful of children’s rights than relying on initial responses.
Best practice requires that you:
- Obtain consent from all children participating in research.
- Make sure children are fully informed as to the purpose of the research and what their involvement will be.
- Respect children’s decision about participating in research, including their dissent or unwillingness to participate.
- Carefully consider the strengths and limitations of obtaining parental consent.
- Ensure that children (and others) understand that consent is negotiable and that children can withdraw at any point.
- Design the consent process to take into account the evolving capacities of the child as well as the overall research context.
- Consult locally to ascertain if informed consent needs to be obtained from community leaders or representatives.
Putting Guidance into Practice: Reflexive Questions
Who do you need to consult prior to involving children in research?
- Which adults, if any, do you need to meet in the family or local community in order to understand the needs and rights of the children involved?
- Whose consent do you need for children to be in involved?
- What information will you need to provide them with?
What information do children need to consent to being involved?
- How will you find out the information children need?
- How will you tell children about the study?
- What procedures have been put in place to prevent children being coerced to participate?
- What further information will children need (in long-term or longitudinal projects) as the study progresses to enable them to consider their continued consent, and at what stages?
What form will the information for children take?
- Will you provide written information for children? If so, why?
- If you do not provide written information, how will you convey the information? Why have you chosen this method?
- Is there a designated person that the child (and/or parents) can go to if they have any questions or concerns (now and in the future)?
Do children require extra support to contribute?
- How will you identify the special needs of individual children?
- How will you respond to these needs?
How will you assess the competence of children to consent?
- How will you ensure children understand what consent is?
- How will you support children to understand and weigh up any risks?
- How will you ensure that children are able to withdraw without negative consequences?
- How will you ensure children understand that they are able to withdraw consent at any time without penalty?
- How will you make provision for gaining children’s informed consent or allowing their dissent at different stages over long-term projects?
Informed Consent: Frequently Asked Questions
The UNCRC recognises children’s evolving capacities (Article 5) and it is clear that consent processes need to be designed in accordance with these. This is particularly important as the age at which children are considered capable of providing informed consent for research is a contentious subject, varying between countries and in relation to different contexts within countries. The inconsistent and contradictory requirements, and underlying assumptions about children’s capabilities, can be a source of frustration for researchers (Powell et al., 2011).
However, assumptions in certain contexts that children lack the cognitive maturity and/or moral development to make informed decisions about their involvement in research are challenged by studies showing that children, including those who are very young or have learning difficulties, are able to make informed decisions when provided with appropriate information (Powell et al., 2012). When such children are deemed to be unable to give consent, their exclusion from the decision-making process reinforces the view of their dependency and incompetency (Tisdall, Davis & Gallagher, 2009). Resolving this issue is perhaps less about determining whether children are capable of providing consent and more about researchers’ abilities to provide information, tune in and creatively adapt consent processes to meet the needs of children, while simultaneously ensuring that rigorous research practice is maintained. Many researchers are stepping up to these challenges (Arnott et al., 2020; Larsson et al., 2021; Mayne & Howitt, 2022; Martin-Kerry et al., 2019; Massetti et al., 2018; Pyle & Danniels, 2016; Rogers & Labadie, 2018).
Assent is frequently referred to in the documentation, particularly in the North American and international biomedical guidelines (such as those reviewed by Avard et al., 2012). Some researchers advocate the use of assent, the affirmative agreement of a child, rather than consent, in certain situations. However, these do not have to be mutually exclusive and both assent and consent can be used within the same study.
That said, the use of assent is not universally recognised or supported. Criticism includes that it can be used: to refer to an agreement by minors who have no legal right to consent, despite arguments that support children’s competence to consent (for example, gillick competence in England and Wales); in place of consent if children do not fully understand the issues required for consent, meaning children are only partly informed; or it may mean ‘at least not refusing’ and so be misused to cover children’s wish to not participate or non- verbal refusal (Alderson & Morrow, 2020).
On the other hand, the use of assent has been advocated as providing researchers with a way of navigating and transcending differences in language, ability, cultural, social and international borders, and ensuring they can access children’s agreement to participating in research (Cocks, 2006). However, it is important to note that Cocks contends that “‘assent’ cannot be in itself sufficient in ensuring ethical integrity, rather it is complemented by the researcher operating reflexively and within a framework of ethical reflection” (p.249).
Consent usually involves the participant providing a written signature or thumb print, but sometimes a verbal agreement is made. Flexible means of providing information and signifying consent are essential for children, or parents, who are not able or willing to use written methods. Signing consent forms can be problematic and/or intimidating for those who are not physically able to, and populations who are not literate or are particularly vulnerable. For example, undocumented migrants may prefer not to sign documents. In some cultural contexts written consent may be highly problematic, if written practices are different or hold other meanings, for example, related to deception, domination or abuse. This may create distress for people if they are required to sign something they do not understand well. Flexible and appropriate methods of providing information can be employed (see following FAQ: How can researchers ensure that children are fully informed?) and consent can be indicated verbally or actively. In situations where children or parents do not provide written consent it is important to have a planned process and witnesses (or means of auditing) that can verify a proper process was followed and can confirm that the child appears to have given their consent freely.
Obtaining informed consent can be difficult in online research, because of the transient nature of many online environments, the fluctuating form of the research population who may be difficult to identify and the mediated nature of the relationship which makes it more difficult to ascertain the participant’s genuine understanding (Jones, 2011). Jones suggests that informed consent may not be reasonably sought or obtained online prior to the research taking place and considers that it may be a better ethical judgement to obtain informed consent when the research is at the point of reporting and the participants can see what is to be reported. However, regardless of the additional complexities involved in online research, it is critically important that consent is obtained and consideration needs to be given to exploring this and the means of ensuring that it is genuine and informed.
Researchers can provide information appropriate to children’s age and competencies in written form and verbally, and this is emphasised in existing ethics guidance. Rather than using a formal and scientific (‘jargonistic’) form of language, researchers need to translate ideas into very simple terms to promote and enhance understanding in communication between researchers and participants. Innovative methods of informing children can also be used, for example, using photographs or video vignettes to decrease reliance on written consent forms. The ERIC case study by Jennifer Thompson provides an example of using photographs in a visual consent form, to facilitate informed consent in a community with relatively low levels of literacy and limited access to technology.
It is important that children have a source of information for future reference about what they are consenting to. Information should include the research topic, the purpose of the research, what participation involves, any potential risks or benefits that the researcher is aware of, the ongoing option to withdraw, and practical matters, such as where the research will take place and how long it will take. In addition, children should be informed as to what the researcher intends to do with anything they produce in the process of doing research, including, for example, drawings, artwork and photographs. If the intention is that such products will be taken away by the researcher then this should be made explicit to the children, and issues of ownership and acknowledgement discussed and clarified in order for consent to be given.
However, ensuring that the information is received and understood by children (and parents) can be problematic in practice, regardless of how comprehensive and encompassing it is. Mismatches in understanding are likely and difficult to detect (Gallagher et al., 2010). This is particularly highlighted when the researcher/interviewer and children participating do not speak the same language. The use of interpreters presents unique challenges, with another layer of communication to be navigated in ensuring that the intended meaning of the information is conveyed and received. Simply providing information (particularly in written form) is not enough to ensure understanding; researchers need to engage with ways of ascertaining if potential participants and their parents understand. Cognitive testing of research instruments can be helpful, but even with information provided and understanding indicated, it is difficult for anyone, including children, parents and researchers, to fully anticipate the outcomes of participation and what all the potential risks or benefits may be. The ERIC case study by Kate McAlpine discusses challenges occurring in relation to the application of ethical standards, for example in gaining informed consent in fieldwork practice.
Another consideration in long-term research projects, such as longitudinal studies, is whether there is a need for children to receive additional information as the project progresses, appropriate to their age and capacities, in order to ‘re-consent’ to participation. Some projects have clearly defined phases, which lend themselves to gaining children’s consent at each consecutive stage. An important aspect of this is ensuring that children are informed about, and in agreement with, the storage and use of their personal data over time, particularly in cases of secondary analyses of previously collected data.
When using visual methods with children, such as data collection involving children taking photographs, there is another level of informed consent required, as other people (including children) may appear in the pictures taken by the participants (Phelan & Kinsella, 2013). The ethical consideration of gaining informed consent in relation to the child appearing in the visual images can be challenging, particularly as it is likely to be the child research participant taking the photo and who is then in the position of asking the child and/ or parents for consent, with the researcher unlikely to be present. This adds a further layer to the already complex task of ensuring that children and parents are fully informed and understand both the present context of the research and the future use which may be made of the photograph, for example in publications, reports and presentations. In a study by Phelan and Kinsella (2013) the following questions were used to design the assent process for children: “Why are you being asked to be in a picture? What will happen to you? What will happen to the pictures?” (p. 83).
The nature of power relations between adults and children means that it can be difficult to ascertain that children have a genuine choice regarding participation and that their consent is given freely. Indeed, “children’s consent must be seen in the context of constraints, obligations and expectations over which researchers have little control” (Gallagher et al., 2010, p. 479). For example, in some contexts, such as educational or medical settings, children’s compliance with adult/authority requests and requirements is often compulsory. Children in school settings are likely to view the researcher as a school visitor and feel obliged to co-operate (Gallagher et al., 2010; Hill, 2005). It may therefore be difficult for children to decline the request to participate in research and participation could verge on coercion (David, Edwards & Alldred, 2001), although recent research offers further insight into children’s agency in school contexts (Kirby, 2020).
Cultural considerations, such as strong expectations regarding obedience of children to adults or collective decision-making, impact on children’s autonomy and their expressions of willingness to participate, or decline participation, in research. Some researchers argue that the impact of power relations on children’s freely-given consent to participate in research is thrown into sharp relief in developing countries, in which children are most often subordinate to adults and obedience is strongly entrenched (Clacherty & Donald, 2007). Children’s consent can be influenced by wanting to show respect to adult caretakers (Nyambedha, 2008), or constrained by power relations in the community (Ahsan, 2009). In addition, cultural standards and traditions may impact significantly on consent in ways that researchers from outside the community or area are unaware of, or unsure of how to respond to respectfully. For example, the ethics of hospitality are very strong in some cultures and may influence consent and research relationships, with people unable to decline participation and sharing food or other items with researchers that they can ill afford (see ERIC Case studies by Sadaf Shallwani and Elsbeth Robson).
While it is critically important to provide children and parents with information and gain their informed consent in all research, particular care must be taken in biomedical and clinical studies in line with the specific risks. Some children have had their rights infringed through being subjected by business enterprises to unnecessary or inappropriate biomedical research without their or their parents ́ full and informed consent being given (United Nations Committee on the Rights of the Child, 2012). Special care must be taken in gaining consent to avoid any risks of ‘therapeutic misconception’ in which individuals do not understand that the defining purpose of clinical research is to produce generalisable knowledge, regardless of any potential benefit (WHO, 2011). This is an especially high risk in clinical research when participation in research may be perceived by participants and their families as an opportunity to access medical treatment, and in social and epidemiological research when it may be seen as a route to accessing services or benefits. Similarly, children and parents need to be informed of and understand that results from genetic research are more likely to be less certain and may involve clinically unvalidated tests, compared to those used in clinical genetic procedures (Patenaude, Senecal & Avard, 2006).
Another area for potential misconceptions concerns the nature of the researcher-participant relationship. For example, in ethnographic studies, children may have expectations of continued friendship with the researcher, and thus feel hurt or confused when the research participation ends. Researchers may need to be cautious in this regard, particularly with young children or those with certain types of disabilities, for example, learning disabilities (Stalker, 2003). Consent is thus influenced by raised expectations and unrealistic perceptions of beneficial outcomes.
Respect for children requires researchers to accept children’s decisions regarding participation. It requires them to actively engage with children and assist them to exercise their power and decline participation should they wish. This has particular implications in focus group research. If consent is obtained in a group setting it may be difficult for children to indicate their dissent, due to social and power dynamics at play. For example, doing so may risk disapproval and subsequent bullying or ostracism from their peers. Researchers may build in some informal time before activities begin to allow those who do not want to participate to leave without being noticed. Strategies can be discussed and rehearsed with children, assisting them to exercise their dissent or withdraw their participation in the research study (Ahsan, 2009), for example, with younger children, using ‘stop signs’ can be practised in a playful way before interviews (Jackson-Hollis, 2019). Even with these strategies in place it may be difficult for children to stop their participation in the face of potential or perceived adult disapproval (Bourke & Loveridge, 2014). Hence, it is important to attend to children’s visual, verbal and non-verbal cues to monitor unspoken expressions of unease or dissent (Ahsan, 2009; Cree, Kay & Tisdall, 2002) and recognise these points of resistance as children using the power they have to express their response to research participation.
In research that involves children in group settings there are consequences of an individual’s decision to decline participation or withdraw consent. The issue of consent when engaging in ethnography within a confined space presents added difficulties that do not exist within other forms of research. For example, when a parent or child refuses consent, but the researcher nonetheless remains in the setting conducting the research with some other children present (see ERIC Case Study by Muireann Ni Raghallaigh and Robbie Gilligan). Respect for the individual child suggests that researchers should ensure there is no note taking or other data collection techniques used that involve the dissenting child (for example, when they are interacting with the rest of the group). This limits, though does not completely preclude, data collection as a whole in these contexts. The ERIC case study by Michael Gaffney discusses challenges in obtaining informed consent in ethnographic classroom- based research with children who have a disability.
It is also important that salary and reward structures for research field staff do not unintentionally provide a perverse incentive to encourage consent from participants. For example, payment per interview for field staff, rather than salary, may provide an incentive for staff to persuade potential participants to take part in the research (WHO, 2011).
Behavioural and verbal signs of dissent need to be sensitively observed and attended to by researchers. Very young children, such as babies and pre-verbal infants (Dalli & Stephenson, 2010), or those with physical disabilities, may not be able to move themselves out of situations in which they are uncomfortable. Children who are able to verbalise may not make an explicit spoken request to withdraw from research (Spriggs, 2010). As noted by Clark (2005), listening to children is an active process of communication that is not limited to the spoken word. Behavioural signs of dissent include: passivity; lack of cooperation; fussiness; silence; crying or puckering; constant looks towards the door; lack of eye contact with the researcher; and signs of boredom such as multiple yawns (Keith-Spiegel, 1983). Verbal indicators of dissent made by young children may include: ‘I want to go to the toilet’; ‘I’m tired’; ‘When will I be done?’; and responding repeatedly to direct and age appropriate questions with ‘I don’t know’ (Keith-Spiegel, 1983). Even in one-off questionnaire-based studies children may signal dissent by not doing this very comprehensively, by making obviously irrelevant answers, or by not participating again if the study is repeated.
Decisions about ethical research practices are made within a cultural context, including whom consent is required from (Bogolub & Thomas, 2005), and the usual requirements for parental (and other adult) consent reflect underlying understandings and assumptions about children, childhood, child-parent and wider community relationships. Contextual understandings of children’s capacity to give informed consent in some countries are influenced by conceptualisations of childhood which frame children as immature and vulnerable. This is particularly true for younger children. In these contexts children usually cannot be approached directly, “their sociopolitical positioning means that adults must give permission” (Hood et al., 1996, p. 126). Consequently, research in institutional hierarchies, such as schools, can give rise to an ethical tension around consideration of the child’s agency versus the need to first obtain consent from school principals, teachers, parents and other adult authorities (Gallagher et al., 2010). Across different contexts, care needs to be taken to ensure that focusing on individual capacity to consent does not lead to overlooking the social aspect of consent. In school settings, for example, the child’s relationship with parents, teachers and peers is likely to influence the consent process (Gallagher et al., 2010).
Adults in gate-keeping positions may govern children’s access to research, particularly when the children are considered especially vulnerable, such as children in care, and researchers are advised to establish sound relationships with gate-keeping adults (Bogolub & Thomas, 2005; Thomas & O’Kane, 1998). Researchers involving younger children may also be confronted with a higher threshold for getting parental consent than with older children, especially if the topic of research is considered sensitive (for example, related to violence against children). Consequently, parents and other adults play a significant role in restricting researchers’ capacity to include children’s views and limiting children’s participation in research (Powell et al., 2011).
It is critically important to acknowledge that parents and other adults in gate-keeping roles have an important and positive function in protecting children from potential harm. However, they can also use their power to censor young people (Masson, 2004 (see Fraser et al., 2004)) and may not always have the best interests of the child in mind. While the vast majority of parents care deeply and act in the interests of their children, in some instances, the assumption (usually made in gaining parental consent) that parents will always act in their children’s best interests simply may not be true, and the child’s parent may have reasons for not wanting the child to participate based on their own concerns or interests. Parents who are abusive, for example, may not consent to their child participating in particular research studies for fear of the child revealing the abuse and the researcher subsequently reporting it to authorities. The ERIC case study by Lucie Cluver, Franziska Meinck and Mark Boyes discusses the dilemmas faced conducting research with children affected by HIV and AIDS in South Africa in regard to obtaining informed caregiver consent when guardians were unavailable, unable or unwilling to provide this.
Passive consent procedures, in which parents are only required to let researchers know if they do not want their child to participate, allow researchers to bypass the usual parental consent requirement, and children to participate and contribute in research. However, this is a contentious area, particularly for young children and those with decision-making impairments. The ethics of this have mostly been debated in relation to sensitive research topics, when gate-keeping is more likely to occur (Powell et al., 2012). Ethics committees tend to favour active consent, or ‘opt in’ consent procedures, which respect people’s privacy and allow for autonomy, but also have the effect of silencing children who are dependent on someone else giving consent for them to participate (Alderson, 1995).
Some researchers consider that parental consent, or consent from those in a parental role, should be the rule and not the exception, and that researchers should need to argue from case to case why such consent is not necessary, but not the other way round. Valid arguments for not gaining parental consent might include the risk of suppression of children’s information, or situations in which it is impossible or inappropriate (see following FAQs below).
The already complex matter of obtaining the informed consent of parents or carers is further complicated in some contexts by certain practical challenges. These may include difficulties identifying and locating parents or guardians, low rates of literacy, scepticism about signing documents, and concern that signing a consent form may carry risk to participants or their families in certain contexts (Abebe, 2009; Clacherty & Donald, 2007; Hutz & Koller, 1999).
Undertaking research involving children who are unaccompanied or orphaned significantly complicates issues of consent. The conditions around which this occurs may include humanitarian emergencies, such as situations of civil war, conflict and peace-keeping, or natural disasters. It may also include unaccompanied children migrating to seek refuge in response to humanitarian emergencies or for other reasons. In such situations children are exceptionally vulnerable and the research may be driven by political or other imperatives which are operating under time, resource and other constraints. Therefore, in the absence of parental support and concern for their children’s welfare, it is critically important that the primary factor in deciding children’s participation in research is the best interests of the individual child and that responsible child advocates are involved in the consent process.
Usually, there are caretakers or legal guardians who, in accordance with domestic laws in force, may have the same responsibility and powers as parents. In some instances, the state may have a role regarding responsibility for children that needs to be respected. To this end, some ethical guidelines stipulate a descending order of people from whom consent should be sought or a waiver required. Guidelines prepared by the Human Sciences Research Council of South Africa (2010), Informed consent guidelines re minors (including orphans and vulnerable children (OVC)) and parental substitutes, for example, suggest the order should be: parent; guardian; foster parent (per order of Children’s Court); caregiver (per Children’s Act); or if minor is a caregiver in a child-headed household then consent should be sought from a responsible person (per s137 Children’s Act), or a trusted adult nominated by the minor, including but not limited to social worker, community worker or teacher.
There are some situations whereby it may be inappropriate or impossible to seek parental consent, for example when children are ‘runaways’ and homeless (Meade & Slesnick, 2002), living on the streets (Richter, Groft & Prinsloo, 2007; Vakaoti, 2009), or emancipated minors (King & Kramer, 2008).* This is particularly relevant when the children being sought for the research are older, for example, young people over 15 years of age. Some researchers (and/ or young people) also argue that it is not appropriate to ask for parental consent in certain contexts, such as studies with sensitive research topics that require confidentiality and privacy for the protection of the young people participating. This applies, for example, in studies concerning sexuality (Flores et al., 2018; Macapagal et al., 2016; Sims & Nolan, 2021; Valentine, Butler & Skelton, 2001) or drug use (Langhinrichsen-Rohling, Arata, O’Brien, Bowers & Kilbert, 2006). Gaining consent poses particular challenges when seeking to engage hidden populations of young people to participate in research. In such contexts, other people’s knowledge of the young person’s involvement in the research may be a breach of their privacy and/or a serious and potentially dangerous threat to them, and the young person is unlikely to respond to conventional (and relatively public) approaches to gain their consent.
*In some countries/states statutes allow minors to become legally emancipated and treated as an adult for legal purposes, for example, through marriage or based on
petition from the minor or the minor’s parents (King & Kramer, 2008).
An ethical consideration is the extent to which it is permissible (if at all) to hide or disguise aspects of the purpose of the research. There may be an inherent tension for researchers between wanting to ensure that research participants are fully informed, with consent freely given, and wishing to maximise participation in their research (Hill, 2005 (see Greene & Hogan, 2005)). This tension arises when it is anticipated that full disclosure of information will limit the number of people who are likely to participate. Some researchers argue that limiting information is not acceptable for the purposes of increased recruitment and is only acceptable when there is good reason: for example, where disclosure may place the children in the path of potential harm; the research involves no more than low risk to participants; potential benefits justify the limited disclosure and possible risk to trust in research and researchers; and the precise extent of limited disclosure is defined and articulated (Spriggs, 2010). Not disclosing information, or covert research, challenges the ethical principles of respect, justice and honesty, and considerable ethical debate exists as to whether deceit of participants can ever be fully justified (H. Fossheim, personal communication, December 14, 2011).
The nature and use of deception in research may vary depending on the topic of the study, methodology and research paradigm. For example, in naturalistic observations, participants’ knowledge of the specific behaviours that are being recorded (such as, altruistic behaviours – sharing toys or helping another child) may alter the behaviours that are demonstrated by the participants, and thereby reduce the validity of the study’s findings. Similarly, in some experiments, participants’ knowledge of the study’s purpose/ research question, experimental conditions and how the scores on outcome variables will be interpreted, may change their responses and potentially reduce validity and benefits of the findings.
For example, in repeated measures designs in which participants experience all conditions of the experiment, their knowledge of the conditions could lead to manipulation of responses, thus producing a response bias and inaccurate data. The tension between provision of informed consent and minimising harm versus producing valid results with potential beneficial outcomes needs to be carefully considered, within a context of respect for the dignity and rights of the children participating, by researchers’ who are contemplating the use of any degree of deception. Provision of debriefing procedures is of vital importance to all research, but particularly so if any deception is used. Researchers need to fully explain to children the purpose and procedure of the study, the risks involved and the benefits expected, in a manner suitable for their age and competency. Researchers also need to provide age and competency appropriate answers to any questions the children have before, during and after their participation, and to provide support for any ongoing issues arising from their participation.
A significant amount of meaningful and important knowledge about children and their lives can be generated without involving children directly, for example, analysing registries and other statistical information. However, there are important ethical issues raised for researchers who access, or have privileged access to, children’s information that was provided for other than research purposes. These might be further heightened if the organization holding the records is highly specialised and easily identifiable. For example, a practitioner working in a therapeutic service for children might want to conduct research based on the children’s files, or researchers may want to use information provided by children to child helplines. This raises the question of whether it is ethical to use information, perhaps for a cause such as raising awareness about issues children face, without having asked the children who provided the information for their permission to do this. Realistically, it may not be feasible to ask a distressed child in crisis whether the service might at a later date use their case to raise awareness or influence change. One option, without having gained consent, is for researchers to try turning children’s cases into anonymous vignettes. However, the children themselves may still have the impression that their experience, disclosed in confidence, is being used to influence others or for publicity purposes.
Informed Consent: ERIC Case Studies
The following ERIC Case Studies offer insight into how others have approached informed consent processes with children and young people in different research contexts.