Children and the provision of informedconsent
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
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.
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 informedconsent (Chapter
9); and sharing lives with children and shaping children’s values through
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
• The importance of ‘informedconsent’
• 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
outweigh the risks and costs to participants
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 informedconsent 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
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, informedconsent forms) serve as a form of limit to REC trust decisions.
At the most basic level the
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 informedconsent 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
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 informedconsent 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
‘drama and a debate about the drama’.
Sections 7 and 8 deal with ‘fairness’ and ‘privacy’. The former
emphasises the importance of ‘informedconsent’ 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
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.