Chapter by chapter

Chapter 1 – Context and ethos (download as PDF)

This chapter sets out the ethos of the report, providing an introduction to the main issues, as identified by the Working Party, and presenting the fundamental attitudes to research and to children and young people that have underpinned the Working Party’s approach throughout its work.

Chapter 2 – Being invited to take part in research: evidence and law (download as PDF)

This is a background chapter, giving an overview of the empirical evidence of children’s, young people’s, and parents’ experiences of clinical research at the point of potential recruitment to a study (in practice, the first point at which most children, young people and parents will be confronted with research questions). This is followed by a summary of the regulatory approaches that govern this recruitment process

Chapter 3 – Developing research proposals – law and practice (Download as PDF)

This chapter provides further background, stepping back chronologically from the moment of recruitment to research to consider all the factors that influence research up to that point: in the initial prioritisation of research topics; in the process of study design; and in the scientific and ethical review procedures that are designed to act as safeguards in the development of research protocols

Chapter 4 – An ethical approach to children’s involvement in research (Download as PDF)

This chapter provides the heart of the report, developing the Working Party’s ethical analysis which is rooted in consideration of the position of children and young people within their families, and the responsibilities of their parents towards them in the context of decision-making about research. Its central concern is to articulate the circumstances in which children and young people may ethically participate in research, suggesting a new approach to concepts such as the ‘best’ interests of a child, and the presumed vulnerability of children and young people in research

Chapter 5 – Developing research proposals: professionals’ responsibilities (Download as PDF)

This chapter draws on the analysis in Chapter 4 to explore the professional responsibilities of those engaged in shaping the research agenda: in determining the priority given (or not given) to particular research areas; in developing study design; and through the processes of scientific and ethical scrutiny. It should be read as a companion chapter to Chapter 3, applying the Working Party’s ethical analysis to the background material presented earlier, in order to make recommendations within the UK/EU context.

Chapter 6 – Taking part in research: professionals’ responsibilities (Download as PDF)

This chapter then returns to the professional encounter between researchers and children/young people and their families in a research study, exploring the implications of our ethical analysis in Chapter 4 for practitioners at the point of recruitment. It makes a number of practical recommendations, targeted primarily at a UK audience, but with potential resonance further afield.

Chapter 7 – Concluding thoughts (Download as PDF)

This is a short concluding chapter, drawing together the main threads and conceptual recommendations of the report.

Previous work

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