Building ethics into the research design

Many of the ethics questions that relate to adults apply equally to children, and you can find examples throughout this guidebook. This section is specifically about the differences between children and adults in research in relation to ethics questions. There is a burgeoning research literature on this – see the suggested additional reading.

The ethics of research with children is a balance. On the one hand, the focus is on ways of preventing and reducing harms in research and ensuring adequate protection of children and young people. On the other hand, there is concern about the risks and harms of silencing and excluding children from research about their views, experiences and participation.

There are, however, ongoing debates in the academic literature about the ethics of social research with children, related to different disciplinary perspectives (for example, developmental psychology and the sociology of childhood) and in relation to the differences between children and adults in research. The ethics principles that apply to research with adults – such as that of ensuring freely given fully informed consent, and the right to withdraw from research participation – apply equally to children, but there are four additional provisos specific to research involving children:

1. children’s competencies, perceptions and frameworks of reference, which may differ according to factors including – but not only – their age, may differ from those of adults;
2. children’s potential vulnerability to exploitation in interaction with adults, and adults’ specific responsibilities towards children;
3. the differential power relationships between adult researcher and child participant; and
4. the role of adult gatekeepers in mediating access to children, with concomitant ethical implications in relation to informed consent.

The key points are as follows:

• As a researcher, you have to get initial consent from gatekeepers – parents and/or teachers or others with a duty of care for the child – and you need to consider who you have to get permission from.  This permission does not mean the child has consented to participate, but it allows you to seek consent from the child. 
• You should get active consent from each individual child – not from children as a group (because individuals in the group could feel pressured to take part against their wishes).  If you are not going to get consent from each individual child, your approach is very likely to be questioned by an ethics committee, and so you need really clear justification. 
• As a general rule, remember that the child is the participant, not the gatekeeper, and so ethics principles about consent should always apply to the child – whatever the child’s age.  As with adults, start from a position of assuming competence, don’t assume children are incompetent, but recognise the need to adapt your methods for seeking consent to their level of understanding.  See our section on defining and assessing competence to consent.
• For more information about the permission and approval that may be required for research involving children, see our section does your research involve children?

Consent and gatekeeping in research with children

It is important to differentiate between consent for research and for consent to medical treatment (including clinical research trials). For example, The European Clinical Trials Directive (2001/20/EC) required parental consent for all clinical trials on minors.  Although this Directive applies only to clinical trials, and not to other forms of research with children, it is usual for adult consent to be sought for research with children.

 Gatekeepers to research with children and young people commonly include parents and professionals in mainstream services such as schools. Research with children in institutional settings such as schools can raise particular ethical issues in relation to individual consent, for example, if research participation is conducted as a whole-group (e.g. classroom) activity. 

Additional layers of gatekeeping govern access to children and young people classed as ’vulnerable’ – such as children excluded from school, young offenders, young people with additional or complex needs, and looked after children.  Issues such as vulnerability and potential imbalances in power relationships may be particularly acute in research with these groups of young people. 

Equally, the role of gatekeepers in relation to informed consent highlights debate in the literature about children’s competency and autonomy to make decisions about whether to participate in research. Conceptual issues, for example relating to children’s human rights and to their agency as competent research participants, sit alongside legal requirements, including frameworks such as the Fraser Guidelines, based on the Gillick Ruling (Gillick [1985] 3 All ER 423), which are not intended for – but which may be applied to – research. 

Alderson (2007, p2273) commented that legal debates about minors’ consent ’are less concerned with children’s rights than with adults’ freedoms’.  Her comment highlights a question about the relative emphasis on adult and child consent, and seems particularly apposite in considering the role of gatekeepers in research with children.  Is there a risk that regulatory requirements emphasise securing consent from adult gatekeepers, whilst agreement to participate from children may be elided, or based on passive assent rather than freely given and fully informed consent? 

The difference between consent and assent

Guidance often mentions children’s assent, particularly the US literature. However, it is not a useful concept for several reasons:

• Assent refers to agreement by minors who have no legal right to consent. However the Gillick Ruling does not specifically exclude any child as too young to be Gillick competent. Children, therefore, who can make informed ’wise’ Gillick competent decisions are giving consent, rather than assent.
• Assent refers to agreement by children who understand some but not all the main points required for consent. But this begs the question of whether a partly informed decision can count as a decision at all.
• Finally, assent can be taken to mean ’at least not refusing’. But that is very different from actually assenting – i.e. positively agreeing. Children may be too afraid, confused, or ignored to refuse. So the term assent may be misused to cover children’s refusal.

Parents’/carers’ consent

The general guidance is to ask parents’ consent to approach children and then ask for children’s consent. Ethical research involves informing and respecting everyone concerned. However, there are certain dilemmas, such as obtaining the consent of both parents.

Will the consent of one parent alone suffice, especially if they live apart? There is no law that both parents must be asked.

In one study about separated families, the researchers usually asked the residential parent. They asked both parents when a child was co-parented (living part-time in two households) or saw both parents often. Yet they found that gaining consent from both parents could often be both impossible and unethical because it was intrusive. They decided to work with the family dynamics, trying not to interfere with them or alter them for the sake of the research.

Some parents and children discussed consent to the research with the ’other’ parent as a matter of course. Some parents asked the researchers to contact the other parent; the researchers checked that the other parent did not mind being contacted or having their contact details being given to the researchers. But some parents did not want the other parent to know about the research at all.

The researchers respected their wishes, having checked the implications, and that the first parent would be responsible for any potential repercussions. The researchers decided that as long as the child wished to take part, and there were no obvious risks, they trusted the first parent they contacted to decide what was best for that family. They knew that children were adept at moving between separated households and different family contexts and rules. They believed that taking an individual flexible approach, as they went along, tailored to real lives and relationships, was the only way to conduct ethical research with these families.