Ethical issues of health research involving children and young people

One of the biggest problems faced by researchers working with children and young people is understanding the ethical and legal frameworks that researchers need to follow to successfully undertake research in an ethical manner.

To overcome these problems the Health Research Authority offer training (3 days per year) entitled ‘The Ethical Issues of Research Involving Children’ to researchers and research ethics committee members.  The aims of the training are as followed:

  • To help Research Ethics Committees review children’s research.
  • To help researchers develop ethical research involving children.
  • To consider the place of research in healthcare for children and young people.
  • To give Research Ethics Committee members and researchers insight on how to address ethical issues in a children’s research application.

For those who know my line of work it won’t surprise you that my involvement over the years has been to deliver a session on the importance of involving children and young people in the design and delivery of health research.

Articles

The demand for this training has increased and together with Dr Hugh Davies (Paediatrician (retired); Chair, Oxford A REC and former Research Ethics Advisor UK Health Research Authority); Dr Bob Phillips (Honorary Consultant in Paediatric and Teenage and Young Adult Oncology, The Leeds Teaching Hospitals NHS Trust; Senior Clinical Academic at Centre for Reviews and Dissemination, University of York), and Simon Stones(Patient Advocate, Consultant and Researcher)we produced a series of articles on the topic of research with children and young people to be published in the journal Archives of Disease in Childhood. Two have been published recently (see publications list below) and two will be published in the coming months.

The articles offer insight into some of the complexities of undertaking research with children and young people, along with practical strategies of how we can move forward and how we can work together to ensure a better understanding of the need for children, young people and their families to be able to take part, engage with, and shape research. In addition, Simon Stones (our design Guru) also produced a series of simple guides summarising the articles with some key messages and strategies, these include:

 

Davies, H.T., Philips, B., Preston, J. & Stones, S.R. (2019). Making research central to good paediatric practice. Archives of Disease in Childhood 104(4): 385-388. Doi: 10.1136/archdischild-2018-315117.

Preston, J., Stones, S.R., Davies, H. & Philips, B. (2019). How to involve children and young people in what is, after all, their research. Archives of Disease in Childhood 104(5): 494-500. Doi: 10.1136/archdischild-2018-315118.

Phillips, B., Davies, H.T., Preston, J. & Stones, S.R. (2019). Framework to help design and review research involving children. Archives of Disease in Childhood 104(6): 601-604. Doi: 10.1136/archdischild-2018-315119

Davies, H.T, Phillips, B., Preston, J. & Stones, S.R. (2019). How to navigate the ethical review of research. Archives of Disease in Childhood 104(7): 697-700. Doi: 10.1136/archdischild-2018-315120.

    

For further information about this training please contact: jennifer.preston@liverpool.ac.uk

 


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