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.

General policies and guidance

Relevant UKRI guidance

MRC-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 good research resource hub includes information on:

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

ESRC guidance on research with children and young people

MRC guidance documents include:

Ethics of involving children in research

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

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

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

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

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

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

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

Co-production and PPIE

Tips for involving children in research from INVOLVE

GenerationR

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

Save the Children’s resources on doing research with children

Safeguarding

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

DBS for Scotland (mygov.scot) 

AccessNI criminal record checking service

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

Consent

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

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)

Information from the UK Data Service about seeking consent for data sharing from children

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