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Title: Consent, choice and children in research : exploring decision making by parents of children with Duchenne muscular dystrophy considering participation in genetic research projects
Author: Henderson, Alex
ISNI:       0000 0001 3552 5956
Awarding Body: Newcastle University
Current Institution: University of Newcastle upon Tyne
Date of Award: 2008
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Background: Informed consent is a concept that is fundamental to the ethical inclusion of individuals in medical research projects. Theoretical and ethical analyses of consent has focused on important criteria including voluntariness, competence, provision of information, recommendation, understanding, decision making al!d authorisation. Study aims: (l) To explore the meaning of the concept of informed consent to parents who are contemplating including their sons in research projects, which are designed to develop and trial novel genetic treatments; (2) To assess the ways in which these parents engage in the consent process. Discussion: This thesis draws on qualitative interview data on the process ofconsent as experienced by parents of children with Duchenne muscular dystrophy. The results from an interpretative phenomenological analysis ofthe interviews indicate that there is significant dissociation between how parents are expected to think and choose, and how they actually behave in real life when ml)king consent decisions for their children. Many ofthe criteria which are used'for assessing adequacy of consent appear unrealistic, impossible or irrelevant to parents. This incongruence seems to result from a model, based on a principle-led form ofrational reasoning, which tends to abstract the process of consent from its clinical and social setting. There is a risk that a strict focus on a narrow analysis of consent, concentrating on elements such as competence, voluntariness, etc., can lead to consent becoming devoid ofmeaning to individuals. In tum, this threatens parents' participation in decision-making and provides some explanation for why many patients, parents, clinicians and researchers feel cynical, irritated, or despondent about consent. A more sophisticated understanding of how these decisions are made is important to ensure that ethical decisions about paediatric research participation can be made.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available