Ethics in Research with Children

by

Ann Farrell

• LAST REVIEWED: 28 April 2017
• LAST MODIFIED: 13 January 2014
• DOI: 10.1093/obo/9780199791231-0070

Introduction

Widespread scholarly interest in ethics in research with children, as an extant field of inquiry and practice, is a relatively new phenomenon. The discipline of ethics can be traced back to the Hippocratic school, but its contemporary applications in the everyday worlds of children and those around them are gaining greater attention from theorists, practitioners, and those involved in policy. Heightened international awareness of the United Nations Convention on the Rights of the Child (1979) gave significant impetus to increasing international awareness of children’s rights to provision, protection, and participation in everyday contexts, including those in which research occurs. Understandings of research ethics and of children’s involvement in research relate to broader understandings of children and childhood drawn from developmental science, sociology, human geography, health sciences, and children’s human rights to participation and protection. Key understandings pertain to children’s competence to participate in research, to operate as reliable informants with respect to their own lives, to provide voluntary informed consent and dissent in research, and to make meaningful decisions about the nature and extent of their participation. The field is international and interdisciplinary, although bounded by legislative, policy, and jurisdictional requirements governing research—its conduct and dissemination. So, too, the burgeoning work of ethics committees, whether in relation to health research or social research, is evidence of a sharpened focus on governance of child research. Oxford Bibliographies offers a suite of perspectives, resources, and strategies to guide the researcher, practitioner, and policymaker and serves to challenge readers to interrogate conceptual understandings, methodologies, and dissemination of research with and about children. Exploration of the suite opens up new possibilities for considering children’s rights to participation in matters that affect their lives and for children to be seen and heard in research.

General Overviews

Foundational 18th-century work by Immanuel Kant (Kant 2003, Kant 1995) provided a conceptual basis for the focus on human research ethics that ensued in the 20th century. Following World War II and the historic Nuremburg Military Tribunals, the Declaration of Helsinki (World Medical Association 2000) (originally published in 1964) laid the foundation for the significant body of work on children as active participants in research that emerged in the early 21st century. This growing corpus is evidenced in O’Reilly, et al. 2013, following a preceding decade featuring the contributions of Holland, et al. 2010; Kodish 2005; Moss 2001; and Tisdall, et al. 2009.

• Holland, Sally, Emma Renold, Nicola Ross, and Alexandra Hillman. “Power, Agency and Participatory Agendas: A Critical Exploration of Young People’s Engagement in Participative Qualitative Research.” Childhood 17 (2010): 360–375.

  DOI: 10.1177/0907568210369310

  This article presents a critical examination of the process of participation in research as enabling for participants. The participation of young people and how power relationships are conceptualized are explored in depth.

• Kant, Immanuel. Foundations of the Metaphysics of Morals, and, What Is Enlightenment? 2d ed. Translated by Lewis White Beck. Upper Saddle River, NJ: Prentice Hall, 1995.

  Kant’s foundational 1797 work provides readers with insight into what was seen as revolutionary thinking in describing ethics, or moral laws, as categorical imperatives.

• Kant, Immanuel. Critique of Pure Reason. Basingstoke, UK: Palgrave Macmillan, 2003.

  A 1781 seminal work in philosophy, Kant’s classic offers a historical lens for framing the topic of ethical research.

• Kodish, Eric, ed. Ethics and Research with Children: A Case-Based Approach. Oxford: Oxford University Press, 2005.

  This edited volume takes a pediatric, case-based approach to studying the morality of research with young children. The text looks at contentious issues, such as the relative authority of parents and children in decision making in research as well as financial remuneration for participation.

• Moss, Peter. “Making Space for Ethics.” Australian Journal of Early Childhood 26 (2001): 1–6.

  Three sets of ethical ideas are illustrated in this article: postmodern ethics, the ethics of an encounter, and the ethics of the self. The author argues for a more robust discussion and reconceptualization of ethics within the field of early childhood and gives a rationale for so doing.

• O’Reilly, Michelle, Pablo Ronzoni, and Nisha Dogra. Research with Children: Theory and Practice. Thousand Oaks, CA: SAGE, 2013.

  This work discusses the often overlooked matters associated with doing research with vulnerable children, such as those with learning disabilities and mental or physical health issues, or both, as well as with young offenders and looked-after children. The authors consider theoretical and practical issues in the design and conduct of child research.

• Tisdall, E. Kay M., John M. Davis, and Michael Gallagher. Researching with Children and Young People: Research Design, Methods and Analysis. Los Angeles: SAGE, 2009.

  This work deals with the issue of listening to children and young people in research. Drawing on resources from an online course and associated research on the topic, the book critiques terminology that is used frequently in child and youth research, such as “research,” “consultation,” and “evaluation.”

• World Medical Association. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Fernay-Voltaire, France: World Medical Association, 2000.

  The Declaration of Helsinki was originally published in 1964. The Nuremberg Military Tribunals drew the ten basic principles for ethical research with humans and mandated that research contribute to the good of society. The World Medical Association published principles concerned with research in the form of the Declaration of Helsinki. These principles came to frame ethical research in the following century.