Contemporary Directions in Research Ethics in Pediatric Psychology: Introduction to the Special Section

Abstract

The importance of research on ethics in the field of pediatric psychology is multifaceted: research on a wide range of pediatric studies raises continuing ethical concerns related to informed consent, including parental permission and assent (Appelbaum, Lidz, & Grisso, 2004; Brody, Scherer, Annett, & Pearson-Bish, 2003; Drotar, 2008; Masty & Fisher, 2008; Miller, Drotar, & Kodish, 2004; Miller & Nelson, 2006; Vitiello, 2008). Moreover, genetic and genetic testing research (Patenaude, 2005), prevention and intervention research with high-risk pediatric populations (Bauman, Sclafane, LoIancono, Wilson, & Macklin, 2008), and comparative effectiveness research that compares two active treatments (Stines & Feeney, 2008; Tunis, Benner, & McClellan, 2009) raise challenging new ethical issues. Research on the ethical conduct of psychological research with children and adolescents is needed for several important reasons: ethical principles such as respect for persons require investigators to facilitate informed consent (parental permission and assent) and appreciate factors that promote parents’ and childrens’ understanding of risks and benefits and informed, engaged research participation. The ethical principle of justice encourages investigators to develop methods to enhance research participation of minority and/or economically disadvantaged research participants who are underrepresented in research in pediatric psychology. To the extent that investigators implement research that facilitates diverse research participants’ informed engagement in research, this will enhance the quality of internal validity as well as the generalizability of data that are obtained. Research on pediatric ethics will also illuminate important areas such as family communication and decision making, which are highly relevant to the management of pediatric chronic illness. Data from studies of ethics in pediatric psychology will also facilitate the training of researchers to enhance the quality of their interactions with research participants and improve the ethical conduct and methodological quality of their research. Finally, data from research on ethics in pediatric psychology can inform the decisions of institutional review boards (IRBs) concerning critical areas of research ethics such as parent and child experiences in research participation, perceptions of risk and benefits, and quality of consent. The extraordinary variation in pediatric IRB practice across settings, which is well documented (Kimberly, Hoehn, Feudtner, Nelson, & Schreiner, 2006), may be highly influenced by local practices, including experience with the types of research conducted in specific settings, and IRB membership composition. Valid and compelling data on important ethical issues provide generalizable scientific knowledge that can inform IRB practice and policy in specific areas of pediatric psychology research. What are the types and functions of research on pediatric ethics? Kon’s (2009) conceptualization of different levels of research on bioethics provides a useful framework. The first category, descriptive or ‘‘lay of the land’’ research, defines current practices, opinions, beliefs, or decision making in a specific area of research or clinical care (Kon, 2009). Research on practices of payment to pediatric research participants (Weise, Smith, Maschake, & Copeland, 2002). In this volume, Birnie, Noll, Chambers, von Baeyer, and Fernandez’s description of researchers’ practices with the cold pressor test is an excellent example of this type of research. A second category, ‘‘ideal’’ versus ‘‘reality’’ research starts with an