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Researchers and their 'subjects'Ethics, power, knowledge and consent$
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Marie Smyth and Catherine Bond

Print publication date: 2004

Print ISBN-13: 9781861345141

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781861345141.001.0001

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Ethical protection in research: including children in the debate

Ethical protection in research: including children in the debate

(p.55) Three Ethical protection in research: including children in the debate
Researchers and their 'subjects'

Trudy Goodenough

Emma Williamson

Julie Kent

Richard Ashcroft

Policy Press

This chapter discusses participants' views of ethical protection in longitudinal epidemiological genetic research. The data used in this chapter was collected as part of the ‘Ethical Protection in Epidemiological Genetics (EPEG): Participants' Perspectives’. This was a three-year qualitative research project designed to examine how adults and child participants in a major longitudinal epidemiological and genetic study of child health understand their participation in the research, particularly in terms of their perception of the ethical protection of participants. This chapter is specifically concerned with how child participants describe their relationship to the research and the researchers, and to what extent and at what point can they be said to have consented to participate in the study. This chapter provides a different perspective into the way in which the ‘objects’ and ‘subjects’ of scientific study perceive the role and contextualises it within a wider contemporary debates about the role of children in society. After outlining the EPEG project methodology, the chapter considers how children see and perceive their initiation into research within the various processes of consent and proxy consent. It includes an examination of the children's thoughts on the content of the research and their thoughts whether they would take part in the research. The chapter also looks into the choices that children make and their perceptions of the implications of their choices and then examines what perception meant for this specific group of children.

Keywords:   ethical protection, epidemiological genetic research, participation, child participants, relationship, researchers, objects, subjects

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