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Efforts to apply ethical guidelines and regulations to vulnerable populations are often problematic. Consequently, health and social scientists sometimes shy away from the challenges of research, particularly when it means addressing value-laden social problems such as sexuality, drugs, and racism. Ethical Issues in Community-Based Research with Children and Youth is a collection of essays that describe the uniqueness of community-based research, outlining several of the ethical concerns that it engenders. The contributors examine such issues as the scope of informed consent to multiple stakeholders, determining competence to give consent in marginalized populations, and managing dual roles as participant researchers. The collection suggests that a more collaborative, ongoing, and discursive approach is needed by researchers and by ethical review boards to ensure that research on sensitive social problems with high risk populations is supported and also conducted with a clear understanding of the highest ethical standards possible.
In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular.
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children explores the ethical issues posed when conducting research designed to identify, understand, or ameliorate housing-related health hazards among children. Such research involves children as subjects and is conducted in the home and in communities. It is often conducted with children in low-income families given the disproportionate prevalence of housing-related conditions such as lead poisoning, asthma, and fatal injuries among these children. This book emphasizes five key elements to address the particular ethical concerns raised by these characteristics: involving the affected community in the research and responding to their concerns; ensuring that parents understand the essential elements of the research; adopting uniform federal guidelines for such research by all sponsors (Subpart D of 45 CFR 46); providing guidance on key terms in the regulations; and viewing research oversight as a system with important roles for researchers, IRBs and their research institutions, sponsors and regulators of research, and the community.
Studies involving children with mental, emotional, or behavioral problems--or their families--have to meet certain standards of research ethics. This book contains chapters on the kinds of ethical dilemmas that typically occur in different types of studies of children, and then presents 65 real-world cases from experts who study children's mental health. These experts offer practical suggestions for how to handle these dilemmas. Chapters on the perspectives of parents, regulators, and bioethicists provide additional points of view on these issues. Written in down-to-earth language, this book will be useful for professionals who study children, for those who train students in research methods, and for parents who are thinking about participating in research studies. In attempting to bridge the apparent gap between ethics and science, the editors close this volume on a note commonly sounded by researchers: more research is needed. Yet in this area, a new kind of research is required. The science of scientific ethics must be developed and expanded, and better understanding of the determinants and circumstances under which children can comprehend and evaluate risks and benefits is needed. Likewise, fuller knowledge of the contextual factors affecting children's and families' consent to participate in research is essential. In particular, development of scales to assess children's ability to comprehend risk-benefit issues, studies of families' reactions to research procedures, and empirical data on the impact of various forms of participant reimbursement will advance both science and ethics. This volume should spur further research, serving as a guide for current investigators, participating families, institutional review boards, and policymakers who shape the research enterprise.
Ethical questions are at the centre of research with children and young people. This clear and practical text informs students and researchers about the relevant laws and guidelines and current debates in research ethics. Priscilla Alderson and Virginia Morrow cover ethics at every stage of research, and with all kinds of young research participants, particularly those who are vulnerable or neglected. They break down the process of research into ten stages, each with its own set of related questions and problems, and they show how these need to be addressed. This practical book is essential reading for anyone who conducts or reviews research with children or young people. Priscilla Alderson is Emerita Professor of Childhood Studies at the Institute of Education University of London. Virginia Morrow is Senior Research Officer in the Department of International Development, University of Oxford.
This volume addresses challenges at methodological, procedural and conceptual levels for the responsible conduct of research in the field. Each chapter includes case examples to illustrate significant ethical principles.
This book provides a clear framework for conducting participatory research with children and young people supported with practical examples from international research studies. Our aim is to encourage more participatory research with children and young people on all matters that affect their lives. This book illustrates innovative ways of being participatory and sheds new light on involvement strategies that play to children’s and young people’s competencies. Participatory research is based on the recognition of children and young people as active contributors rather than objects of research. Participatory researchers support and value the voices of children and young people in all matters that concern them. Core to participatory research practice is a strengths-based approach that aims to promote the active engagement of children and young people in all stages of research, from inception to implementation and beyond. Engagement of children and young people requires the use of creative, participatory methods, tools and involvement strategies to reveal children’s competencies. This book shares knowledge about creative participatory techniques that can enable and promote children’s ways of expressing their views and experiences. The book provides guidance on appropriate techniques that reduce the power differential in the adult-child relationship and which optimise children’s abilities to participate in research. This book is targeted at researchers, academics, and practitioners who need guidance on what tools are available, how the tools can be used, advantages and challenges, and how best to involve children in all stages of a research project. It will provide several examples of how children can have an active participatory role in research. There is increasing interest in involving children as co-researchers but little guidance on how this can be done. This book fills a this gap by addressing all of these issues and by providing worked examples from leading researchers and academics.
Negotiating Ethical Challenges in Youth Research brings together contributors from across the world to explore real-life ethical dilemmas faced by researchers working with young people in a range of social science disciplines. Unlike literature that tends to discuss youth research at an abstracted and exalted level, this volume aims to make the basic principles and guidelines of youth research more ‘real.’ By openly discussing actual challenges that researchers have experienced in the course of conducting their fieldwork or interpreting their findings, this collection provides the most authentic overview of the ethics of youth research available. A careful selection of chapters addresses a range of ethical challenges particularly relevant to contemporary youth researchers. Each chapter identifies an ethical issue that the author has personally experienced in his or her youth research, explains why this was a challenge or dilemma, outlines how the researcher responded to the challenge, and provides advice and draws out broader implications for youth researchers. The chapters are organized around three themes that capture core ethical challenges: power and agency, protection and harm prevention, and trust and respect. The result is a collection that is a rigorous and valuable resource to those embarking on research with young people for the first time as well as supporting the resolution of ethical challenges by more experienced researchers.
′This text will be of great use to postgraduate researchers in education, social work and nursing, and any practitioner involved in carrying out research with children and young people′ - CPD Update ′[T]here is a sense of newness and innovation about the book, whereby the reader is treated to insight into the life and work of collaborators who wrote each case study....[T]he book is highly accessible for students at graduate and undergraduate level, for example BA (Hons) Early Childhood Studies students′ - ESCalate Researching with Children and Young People covers every stage of the process of doing a research project, from research design and data collection, through to analysis and writing up. The book is divided into three sections, in which the authors cover: - Introducing research and consultation with children and young people - Collecting and analysing data - Whole-project issues. Each chapter includes activities, discussion questions, tips and extended case studies to help the reader to engage with the material and investigate the practical implications. This text will be of great use to postgraduate researchers in education, social work and nursing, and any practitioner involved in carrying out research with children and young people.
Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research.