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Ethics in Child Health: Principles and Cases in Neurodisability edited by Peter L Rosenbaum, Gabriel M Rosen, Eric Racine, Jennifer Johannesen and Bernard Dan
Book Review by Al Aynsley-Green
Nottingham Trent University, UK
Published in Developmental Medicine and Child Neurology, July 2017
Fifty-nine authors write from Rwanda, Canada, the USA, Australia, and across Europe. It sets a logical approach across thirty-one chapters in six sections and an epilogue. Section A sets the scene, attuning moral and ethical thinking, before moving to Section B, ‘Early days, the start of the different development journey’. Section C approaches ethical issues in addressing families’ priorities, before Section D, ‘Respecting social and cultural values’. The last three sections consider ethics in relation to therapies, rehabilitation, and interventions, then ethical issues in specific conditions and contexts, before concluding with considerations around emerging independence and preparing for adulthood.
The book demands concentration. It is not one to read from cover to cover in one sitting. However, the comprehensive index facilitates exploring the contents.
How ethics has changed since I graduated as a young doctor in 1967! I can’t recall much teaching on the subject, but since then there has been an explosion of ethical committees of one kind or another, alongside strength in the discipline of medical ethics. So, what reflections on the book can I offer through what I have witnessed?
The book says little on the management of ethical issues in organisations. As President of the British Medical Association I attended its national Ethics Committee, with its members comprising clinicians, lawyers, bioethicists, theologians from different faiths, patient representatives and officials producing impactful publications. The range of issues discussed is formidable, most recently on ‘End of life care and physician-assisted dying’ (https://www.bma.org.uk/collective-voice/policy-and-research/ethics/end-of-life-care). Issues now on the horizon include the ethics and legality of three parent embryos, and the implications of human–pig hybrids.
At the institutional level, as Director of Clinical R&D at Great Ormond Street Hospital in London I was responsible for managing over 1500 research projects. This required a dedicated R&D Office with people and expertise, alongside computerised systems to register, track, and monitor the projects as they progressed (see http://www.gosh.nhs.uk/research-and-innovation/information-researchers/joint-research-and-development-office-rd). It was critically important to create a culture in which all researchers were expected to confront the ethical aspects of their work through adequate training, and to support them with a properly constituted research ethics committee that ‘signed-off’ every project before commencement. Having a research ethics committee by itself does not guarantee efficacy – institutions must provide a culture with identified responsibility for managing all aspects of research from concept to delivery.
During the 1980s, the need for clinical as distinct from research ethics committees emerged because of the concerns of clinicians in addressing complex interventions and treatment – for example, the dilemma in managing young people who refuse, despite parents’ wishes, to be subjected to treatment. This raised new issues over the primacy of the child’s opinion when in conflict with its parents. The child’s right to participation in matters that affect them under Article 12 of the UN Convention on the Rights of the Child is relevant to this book, not least in judging intellectual competence in children with disability (http://www.gosh.nhs.uk/health-professionals/clinical-specialties/clinical-ethics-service-information-health-professionals/meet-clinical-ethics-service-team).
When is an issue a matter for clinical ethical scrutiny, and when for research overview? It may not be clear-cut, and there are obvious areas of overlap that should be considered within an institution. Is one overarching committee adequate, or are there specific requirements that demand parallel structures? Who should lead them, who is responsible, and how are their deliberations reported internally and publicly?
The book makes no reference to these practical aspects of setting up and managing research and clinical ethics structures, and any updated edition might wish to address this to provide insights and benchmarks derived from the experiences of the authors in different cultures and contexts.
As the first statutory Children’s Commissioner for England, my remit, defined by Parliament, was to speak for the needs of the eleven million children of England and to have regard to the United Nations Convention on the Rights of the Child. I found myself immersed in the field of children’s rights, including reporting to the UN Committee in Geneva on the UK Government’s performance in promoting them. New challenges were exposed: intense public and media hostility to the concept that children have rights, and political indifference unless challenged by international agencies or the courts. Are there differences or commonalities in attitudes to children’s rights between the jurisdictions in which the authors work?
What are the relationships between ethics, human rights, and moral principles? They are often used interchangeably, and perhaps having a specific section to consider this question could enhance the book.
The practical dilemmas of these interfaces when in conflict with government policy is exposed though the controversy over age assessment of undocumented migrants – the most important issue currently confronting border agencies worldwide in the face of unprecedented migration.
How is it possible to assess the age of someone who claims to be a child but has no documents to prove it? Politicians want a quick, scientific method that allows a clear conclusion, latching on to routine X-raying of bones and teeth. Unfortunately, there is no method that will tell the precise age of an individual around the critical age of 18 years. Moreover, is it ethical to expose an individual to ionizing irradiation, no matter how small the dose, purely for political administrative purposes? What is the role of the courts in arbitrating in individual decisions? These issues are causing much international controversy, with the UK taking a robust stance that radiology has no place in age assessment, in contrast to nations such as Sweden that promote it.
Finally, as Professor of Advocacy for Children and Childhood, embedded in a university School of Social Sciences, I am seeing limited interaction between ethics in medicine, in social sciences, and in education. However, the medical conditions described in this book are likely to generate issues over the social care and education of children with disability. How might these best be considered?
These reflections set a broad context and highlight issues that are not addressed in the book. Is there a need for a volume that does so? The last 50 years may well be the prelude to ever more complex and difficult issues that challenge ethics, the human rights of children, and fundamental moral rectitude. Who will take this forward at a time when the best interests of children are low internationally on the political and social priority agendas?