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Decision-Making about Child Participation in Medical Research
[Thesis]. Manchester, UK: The University of Manchester; 2014.
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Abstract
Medical research on children is necessary to achieve progress in paediatric medicine for two reasons: firstly, certain diseases are unique to childhood and therefore medical research must be conducted on children to find out more about these childhood diseases, and secondly, adults and children respond differently to drugs and treatment, particularly when it comes to dealing with metabolism and disease. Due to findings that adults and children differ significantly in both pharmacodynamics (the way a drug affects the body) and pharmacokinetics (the way the body responds to the drug), results obtained in adults cannot easily be transposed in minors. To help ensure that children are prescribed safe and effective medicines, it is necessary to reduce widespread use of unlicensed and “off-label” medicines in children, because such medicines have neither been tested nor authorised for use in the paediatric population. Tensions in the legal and ethical frameworks that regulate decision-making about child participation in medical research are an obstacle to research being conducted with children because the existing frameworks cannot effectively inform the decision-making of parents and their children about research participation when they fail to give due attention to the family context in which decisions about child research participation tend to be made. For research and experimental or innovative treatment that falls within the remit of the common law, narrow definitions and interpretations of the best interests test, that do not sufficiently take account of all the different interests that will be involved when making a decision about a child, fail to adequately justify child participation in medical research and the administration of experimental or innovative treatment. The principal objective of this thesis is to highlight how more attention needs to be given to a child in the context of his or her caring relationships and the responsibilities that arise within these caring relationships to enhance existing decision-making frameworks that regulate child participation in medical research and strike an appropriate balance between protecting research participants and facilitating sound research.