Priscilla Alderson

The Ethics of Research with Children and Young People A Practical Handbook

Introduction Defining Some Terms Research Ethics The Purpose of This Book: Starting from Uncertainty and the Question Format Researchers as Insiders or Outsiders The Contents of This Book PART ONE: THE PLANNING STAGES Planning the Research: Purpose and Methods Two Basic Questions Questions about Purpose and Methods Is the Research Worth Doing? Do Theories Matter? Do Viewpoints Matter? Do Methods Matter? Three Phases in Growing Awareness of Research Ethics Three Ethics Frameworks for Assessing Research Uncertainty - The Basis of Ethical Research Summary of Questions Assessing Harms and Benefits Harms Benefits Risk, Cost, Harm and Benefit Assessments Confusion in Risk-Benefit Assessments Risk of Distress or Humiliation Summary of Questions Respect for Rights: Privacy and Confidentiality Legal Rights to Confidentiality Opt-in or Opt-out Access Practical Respect Privacy Rights Data Protection Act 1998 Confidentiality or Acknowledgement? Intimacy between Strangers: Research Interviews Ethics and the Internet Respecting Local Values Privacy and Encouraging Freely Given Responses in Face-to-Face Contact Does Traditional Ethics Cover Modern Research Experiences and Relationships? Summary of Questions Designing Research: Selection and Participation Framing the Topics and Extent of the Research Combining Respect, Inclusion and Protection Does Traditional Ethics Cover Social Exclusion? Images and Symbols Beyond Inclusion to Participation: Children and Young People as Researchers UN-Related Work With Young People Respecting Young Researchers Own Qualities Summary Of Questions Money Matters: Contracts, Funding Research and Paying Participants Planning, Budgeting and Research Agendas Ethics and Funding Sources Carbon Costs Ethics and Contracts Freedom to Publish Paying Young Researchers and Participants Payments in Context Summary of Questions Reviewing Aims and Methods: Ethics Guidance and Committees Review and Revision of Research Aims and Methods Does Social Research Need Research Ethics Committees? Recent Experiences with Research Ethics Committees International Standards A National Social Research Ethics Forum? Summary of Questions PART TWO: THE DATA COLLECTING STAGE Information Spoken and Written Information Research Information Leaflets Leaflet Layout Examples of Research Information Leaflets Leaflets in Other Languages Information in Semi-Literate Societies Relevant Research? Two-Way Information Exchanged Throughout the Research Study Summary of Questions Consent Consent and Rights The Meaning of Consent Consent to Open-Ended Research Assent Consent and the Law Consent by and for Children and Young People Double Standards Complications in Parental Consent Defining and Assessing Competence to Consent Levels of Involvement in Decision Making Respecting Consent and Refusal Consent to Longitudinal Research Consent and Secondary Data Analysis International Standards of Consent Research and International Contexts Why Respect Childrens Consent? General Questions about Childrens Consent Summary of Questions PART THREE: THE WRITING, REPORTING AND FOLLOW-UP STAGES Disseminating and Implementing the Findings Involving Children in Data Analysis Dissemination: Getting to the Heart of Debate and Change Dissemination and Implementation: Children, Young People and Adults Working Together for Change Problems with Dissemination Creative Ways Round the Problems Dissemination and the News Media Critical Readers and Viewers Underlying Attitudes to Children and The 3 Ps Summary of Questions The Impact on Children What Collective Impact Can Research Have on Children and Young People? Reviewing the Impact of Research on Children Positive Images Summary of Questions Conclusion Ways Forward for Individuals and Teams Questions that Cannot be Solved by Individuals Alone The Need for Social Research Ethics Authorities Summary of National Policy Is the Research Worth Doing? And Finally References And Index

Research by children

This paper draws on an international literature to consider ways in which children work as researchers. Childrens and teenagers activities at various stages of research projects, their levels of participation, and their use of a range of research methods are described, with a review of some of the problems and advantages of children doing research.

Multidisciplinary research ethics review: Is it feasible?

This paper reviews the currently rapid changes in research ethics governance affecting many kinds of social research. Arguments for and against single‐discipline and multidisciplinary research ethics committees will be considered, with examples of how medical and social research ethics can inform one another. We conclude that the use of multidisciplinary research ethics committees, guidance and governance can be an effective and necessary part of social research methodology.