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Allyn Fives

9 Children and the provision of informed consent While in the previous chapter we examined the ‘right to parent’, and situations where such a right may be justifiably restricted, in this chapter we turn to one area where parents exercise power over their children and examine when it is legitimate to do so. When researchers try to recruit children as participants in a scientific study or when physicians recommend a course of medical treatment for children, a question then arises as to who may authorise such activity. May parents make these decisions on behalf of

in Evaluating parental power
An exercise in pluralist political theory
Author: Allyn Fives

This is a book about parents, power, and children and, in particular, the legitimacy of parents' power over their children. It takes seriously the challenge posed by moral pluralism, and considers the role of both theoretical rationality and practical judgement in resolving moral dilemmas associated with parental power. The book first examines the prevailing view about parental power: a certain form of paternalism, justified treatment of those who lack the qualities of an agent, and one that does not generate moral conflicts. It proposes an alternative, pluralist view of paternalism before showing that even paternalism properly understood is of limited application when we evaluate parental power. According to the caretaker thesis, parental power makes up for the deficits in children's agency, and for that reason children should be subjected to standard institutional paternalism. The liberation thesis stands at the other end of the spectrum concerning children's rights. The book then addresses the counter-argument that issues of legitimacy arise in the political domain and not in respect of parent-child relations. It also examines the 'right to parent' and whether parents should be licensed, monitored, or trained children's voluntariness and competence, and the right to provide informed consent for medical treatment and research participation. Finally, the book talks about parents' efforts to share a way of life with their children and the State's efforts to shape the values of future citizens through civic education. The overall approach taken has much more in common with the problem-driven political philosophy.

Allyn Fives

types of agency children are capable of and the impact of parenting styles on the development of children’s capacity for agency, help to clarify what moral questions need to be asked concerning parental power. In the following chapters, I will evaluate parental power within the boundaries provided by a number of case studies: the right to parent and whether parents should be licensed, monitored, and trained (Chapter 8); children’s capacity and competence to provide informed consent (Chapter 9); and sharing lives with children and shaping children’s values through

in Evaluating parental power
Owen Price and Lauren Walker

throughout the duration of the study. This chapter will introduce four principles that govern the conduct of ethical research using relevant case examples to bring each principle to life. Topics explored in the chapter include: A Research Handbook for Patient and Public Involvement Researchers Chapter 9: • The importance of ‘informed consent’ • Assessment of capacity to provide consent • Measures to minimise and manage harm arising from planned research importance of ensuring that possible benefits of the research • The outweigh the risks and costs to participants that

in A research handbook for patient and public involvement researchers
Abstract only
Clare Wilkinson and Emma Weitkamp

This chapter will focus on ethics from a broad perspective, considering two main approaches. Firstly, the chapter will consider ethics from a communication and engagement standpoint, how to engage with participants ethically, incorporate informed consent procedures, consider any data that are collected, used and stored, give participants access to further information and follow any relevant ethical guidelines. Secondly, the chapter will explore wider questions regarding the ethics of communication and participation. Is communication about research just

in Creative research communication
Adam Hedgecoe

sets out to explore the way in which RECs draw on written materials submitted by applicants to make initial (sometimes final) decisions about whether to approve a piece of proposed research or not, and, in the process, make judgements about whether an applicant can be trusted to do what they say they will do. A key insight is into the tangled relationship between the idea of written consent to research and the rise of REC review and how consent documents (PIS, informed consent forms) serve as a form of limit to REC trust decisions. At the most basic level the

in Trust in the system
Open Access (free)
Participation to build the bioeconomy
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

of biovalue from these large-scale programmes. This includes two important ‘governing frames’ (Hilgartner 2017 : 13) which elaborate previous forms of participation – extending informed consent and public engagement/participation, including via evolving ideas and practices of ‘genomic literacy’. Genomics and the health of the nation As Fortun wrote in his ethnography of the Icelandic genomics company deCODE's sequencing of the genomic assets of the Icelandic nation

in Personalised cancer medicine
Abstract only
Allyn Fives

Conclusion When political philosophers present their work at conferences and seminars they are often asked for their views on topics or areas that they did not actually address in their paper. For instance, I recently gave a paper on children’s informed consent for research and medical treatment. I was then asked for my views on arranged marriages of teenage girls from religious minorities living in liberal, Western societies. It is understandable, for a number of reasons, that such questions are asked. It is understandable, as people want to test the arguments

in Evaluating parental power
Derek Paget

‘drama and a debate about the drama’. ­Sections 7 and 8 deal with ‘fairness’ and ‘privacy’. The former emphasises the importance of ‘informed consent’ to factual programming, the latter emphasises the importance of ‘reduc[ing] potential distress’ in reconstructions and factual drama. In all these sections the references to docudrama are mostly via phrases like ‘dramatic reconstructions and factually-based dramas’ (p. 39) rather than ‘drama-documentary’, the old ITC’s preferred term. The law and regulation – docudrama in the new millennium 75 Although ‘drama

in No other way to tell it

Embryo research, cloning, assisted conception, neonatal care, saviour siblings, organ transplants, drug trials – modern developments have transformed the field of medicine almost beyond recognition in recent decades and the law struggles to keep up.

In this highly acclaimed and very accessible book Margaret Brazier and Emma Cave provide an incisive survey of the legal situation in areas as diverse as fertility treatment, patient consent, assisted dying, malpractice and medical privacy.

The sixth edition of this book has been fully revised and updated to cover the latest cases, from assisted dying to informed consent; legislative reform of the NHS, professional regulation and redress; European regulations on data protection and clinical trials; and legislation and policy reforms on organ donation, assisted conception and mental capacity.

Essential reading for healthcare professionals, lecturers, medical and law students, this book is of relevance to all whose perusal of the daily news causes wonder, hope and consternation at the advances and limitations of medicine, patients and the law.