Blog: Consent for kids – GDPR and clinical trials

Last updated on 25 Mar 2024

The General Data Protection Regulation (GDPR), admittedly, can be quite a dry subject. It is often difficult for adults to fully understand - there are still elements I struggle to wrap my head around myself at times, let alone children.

However, after a chance meeting with others working in this complex and sensitive area, it became apparent to me that there was a potential solution.

Following an HRA workshop on Participant Information and Quality Standards, where I had been running a session on GDPR, I was approached by Magda Conway from Penta Child Health.

Magda told me about an idea Penta and University College London (UCL) had to create a GDPR resource appropriate for a younger audience. The aim of this resource was to support children and young people to make an informed choice about taking part in a clinical trial or research study. To support this choice, we need to make sure they have access to the right information, in the right way, about what will happen with their personal data.

As a GDPR Subject Matter Expert at the HRA, this felt like an excellent idea, and that my involvement would add value to the project, so I was happy to support.

My involvement in the development of the video consisted of:

  • sharing information that sponsors must provide to participants in a research study with regard to what will happen to their data
  • assessing their understanding of GDPR and how it applies to children and young people
  • reviewing the script for the resource, which was developed at a workshop by young people from the Chiva Youth Committee and the Penta Youth Trials Boards in Uganda, Zimbabwe, South Africa and the UK) to ensure everything was accurate
  • contributing to the final sign off on the finished resource
  • contributing to the communications to support the launch of the resource (including this blog!), and the guidance to be displayed on the HRA website

This has been a great project to be involved in, and an example of when research regulation can actually be quite a fun area to work in!

I’m proud of my contribution to the resource. It is my hope that sponsors across the UK research landscape will use this as a core part of their GDPR information for children and young people, when they ask them to participate in their research.

And I want to extend thank my colleagues who have joined me on this project to share this great new resource, including our Director of Approvals, Janet Messer, for suggesting that we fully recommend and champion the finished resource to the wider research community. This led to the decision to not only promote the resource via our communications channels, but to ensure that it features on theHRA’s website.

I’d also like to thank our communications team (particularly Mat Silk) and our guidance and advice team (especially Lindsay Lacey and Chris Cole) for their hard work on making sure the relevant information and links appear in the right places on our website, and so can be used by those undertaking research studies with children and young people.

Matt Rogerson

Matt Rogerson, HRA Research Regulation Specialist

Watch the GDPR animation for children and young people

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