Research with children and young people

It is important to give children the opportunity to take part in research that may improve understanding of their lives or increase knowledge about childhood conditions. Research with children is essential to ensure they can benefit from new interventions designed for their needs.

Researchers who are working with children will need to consider:

  • additional ethics issues arising from working with this group
  • general ethics guidance on human participant research.

Children and young people must be understood within the context of their stage of growth and development. It is often not scientific or ethical to apply findings from research with adults to them, for example adult drug formulations are often inappropriate for children. Children also require special protection because they:

  • are less likely than adults to be able to express their needs or defend their interests
  • may not have the capacity to give consent.

Key challenges to undertaking research with children include:

  • their potential vulnerability
  • issues of capacity
  • legal protections
  • the need to adapt study designs and outcome measures for this age-group.

Above all, research with children involves a partnership with both the child and their family.

Key principles

Research with children, as with all research involving human participants, must ensure that:

  • there is an acceptable balance of risk and benefit
  • approval is obtained from an independent research ethics committee
  • informed consent is taken from participants.

Specific ethics principles apply to research with children:

  • research should only include children where the relevant knowledge cannot be obtained by research in adults
  • research aims must be relevant to child health or wellbeing
  • assent from children is needed
  • researchers should involve parents or guardians in the decision to participate wherever possible, and always if the child is not yet competent
  • a child’s refusal to participate or continue should always be respected
  • the child and family should be kept informed and have the opportunity to consent to separate stages of the project.

UKRI expects researchers who are undertaking research projects that involve working with children to:

  • seek research ethics approval
  • include children in decisions to participate and obtain their assent
  • provide adequate age-appropriate information about the research to elicit informed decisions about participation
  • inform children and families about the balance of benefits and risk
  • ensure that appropriate child protection or safeguarding measures are in place at study outset
  • observe relevant legal requirements for working with children
  • ensure that any incentives and compensation for participation are age appropriate and not coercive
  • involve children in co-production, public and participant involvement or engagement (PPIE) opportunities to support and inform the research project.

Guidance on legislation

Consent

The Health Research Authority (HRA) provide clear and regularly updated details of the legal frameworks relevant to research with children in England, Wales, Scotland and Northern Ireland.

Key issues are:

  • The laws about a child’s ability to consent to take part in research differ between the devolved countries of the UK.
  • The Medicines for Human Use (Clinical Trials) Regulations applies to England, Wales, Scotland and Northern Ireland. Under this legislation, young people aged 16 years and over can give consent to take part in a Clinical Trial of an Investigational Medicinal Product (CTIMP) while children aged under 16 years are prohibited from giving consent and consent is required instead from a parent or someone with parental responsibility (agreement of only one parent is required).

HRA toolkit for undertaking health and biomedical research with children

Information about the specific requirements when undertaking paediatric clinical trials of investigational medical products (CTIMPs) (PDF, 233KB)

Safeguarding

The responsibility for ensuring that researchers are suitable to work with children and young people rests with individual employers.

In most cases, researchers working with children and young people will need to have Disclosure and Barring Service (DBS) clearance. The DBS checks to ensure that an individual does not have a criminal record history that would make them unsuitable for work or research with young people.

Disclosure and Barring Service (DBS) for England and Wales (GOV.UK)

Disclosure and barring service for Scotland (mygov.scot) 

AccessNI criminal record checking service

Sometimes other individuals, such as a head teacher or social services manager, may be better placed to provide information on relevant disclosures. Further information can be found in the following legislation:

Safeguarding Vulnerable Groups Act 2006

Rehabilitation of Offenders Act 1974

Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975

UKRI policies and guidance

MRC and ESRC joint guidance on involving children in research

This document provides additional guidance on ethics, safeguarding, consent, and co-production related to research with children.

UKRI guidance for researchers and teachers doing research in schools (PDF, 951KB)

Tips, support and activities for researchers and teachers engaging young people with research.

External guidance

The guidance below has not been developed directly by UKRI, but may be a useful resource. Where this advice conflicts with UKRI-produced policies and guidance, UKRI policies and guidance should be followed.

Ethics of involving children in research

Ethical guidance and resources from Ethical Research Involving Children (ERIC)

Joint project involving UNICEF which has produced helpful resources to support ethical research with children.

Nuffield Council on Bioethics working party report on ‘Children and clinical research: ethical issues’

The working party worked with young people to explore ethical, legal and human rights issues and produced recommendations on how to approach clinical research involving children.

Training course (with certificate) exploring the issues raised in the Nuffield Council’s report ‘Children and clinical research’

A training course that covers key material from the Nuffield Council’s reports on research with children and research in developing countries, as well as major international ethics guidance.

Working paper by Virginia Morrow focusing on social research with children: ‘The ethics of social research with children and families in young lives’

This influential paper discusses the practical ethical issues in undertaking social research with children and their families.

NatCen report on ‘Children’s perspectives in participating in survey research’

Key findings from a survey of children aged 7 to 15 years concerning their views on ethical issues in survey-based research.

National Institute for Health Research report on paying children for taking part in research

Guidance from the NIHR and Royal College of Paediatrics and Child Health on payments for children taking part in research.

Royal College of Paediatrics and Child Health (RCPCH) Charter on involving young people in research

RCPCH have developed a charter to guide research with children.

RCPCH resource list

A wide range of resources relating to ethics and wider topics relating to children and research.

Co-production and PPIE

Generation R

An alliance of Young People’s Advisory Groups (YPAGs) who provide advice to researchers.

Save the Children’s resources on doing research with children

A toolkit on the meaningful and ethical engagement of children in research relating to abuse or violence against them.

Safeguarding

Resources on child safeguarding from the Association of Directors of Children’s Services

A wide range of resources relevant to child safeguarding.

Examples of good practice for researchers

Working with disabled young people: Embodied selves in transition project

This ESRC case study describes research with young people who have disabilities.

Engaging and involving young people: AALPHI study

This MRC case study describes how involving young people in a research study about HIV can improve the quality of research and dissemination of findings.

Longitudinal research in developing countries: Young Carers project

This ESRC case study describes longer-term research with young people in South Africa affected by HIV and AIDS.

Related content

MRC guidance documents relevant to children include:

ESRC guidance documents relevant to children include:

The UKRI good research resource hub also has information on:

This is the integrated website of the seven research councils, Research England and Innovate UK.
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