Our primary focus is on analysis of the concept of voluntariness, with a secondary focus on the implications of our analysis for the concept and the requirements of voluntary informed consent. We propose that two necessary and jointly sufficient conditions must be satisfied for an action to be voluntary: intentionality, and substantial freedom from controlling influences. We reject authenticity as a necessary condition of voluntary action, and we note that constraining situations may or may not undermine voluntariness, depending on the (...) circumstances and the psychological capacities of agents. We compare and evaluate several accounts of voluntariness and argue that our view, unlike other treatments in bioethics, is not a value-laden theory. We also discuss the empirical assessment of individuals? perceptions of the degrees of noncontrol and self-control. We propose use of a particular Decision Making Control Instrument. Empirical research using this instrument can provide data that will help establish appropriate policies and procedures for obtaining voluntary consent to research. (shrink)

Since children are considered incapable ofgiving informed consent to participate inresearch, regulations require that bothparental permission and the assent of thepotential child subject be obtained. Assent andpermission are uniquely bound together, eachserving a different purpose. Parentalpermission protects the child from assumingunreasonable risks. Assent demonstrates respectfor the child and his developing autonomy. Inorder to give meaningful assent, the child mustunderstand that procedures will be performed,voluntarily choose to undergo the procedures,and communicate this choice. Understanding theelements of informed consent has been theparadigm for (...) assessing capacity to give assent.This method leaves the youngest, leastcognitively mature children vulnerable towaiver of assent and forced researchparticipation. Voluntariness can also becompromised by the influence of authorityfigures who can exert undue influence andcoerce children to participate in research. This paper discusses factors that may influencethe decision to give assent/permission,potential parent-child conflict in theassent/permission process and how it isresolved, and potential parental undueinfluence on research participation. Theseissues are illustrated with quotations drawnfrom a larger qualitative study of parentalpermission and child assent (data notpresented). We suggest a developmentalapproach, viewing assent as a continuum rangingfrom mere affirmation in the youngest childrento the equivalent of the informed consentprocess in the mature adolescent. (shrink)

Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4-15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. The audiotaped interviews (...) were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent-child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making. (shrink)

This book brings together some of the newest work in curriculum studies to explore central questions that swirl inside of the field: What counts as curriculum research? What procedures are considered legitimate for the production of knowledge? What forms shape the making of explanations? What constitutes proof? It forefronts work by curriculum theorists who are interested in looking at educational problems from a vantage point that questions current models of research--one that suggests adopting "lines of flight" or multiplicities that offer (...) promise to disentangle curriculum theory from traditional research hierarchies and methods-driven dependence on formalities. In _Expanding Curriculum Theory: Dis/positions and Lines of Flight:_ *The essays are connected by their shared concern for combining alternative methodologies, such as textual analysis, discourse theory, hermeneutics, and post-structuralism with perspectives on race, class, gender, and sexual orientation. *Disciplinary boundaries are blurred as curriculum theory is interwoven with cultural studies, political theory, psychoanalysis, dance, technology, and other fields. *To assist readers in understanding the various essays, as well as comparing, contrasting, and connecting them with each other, each chapter opens with a "Thinking Beyond" section. The questions posed are designed to make the text engaging and pedagogically friendly. By doing all this within an overall poststructural framework that encourages and demonstrates creativity, multidisciplinarity, and new lines of flight, this volume makes a unique contribution to expanding curriculum theory. It is a stimulating text for students, faculty, and researchers in the field. (shrink)

_Expanding Curriculum Theory, Second Edition_ carries through the major focus of the original volume—to reflect on the influence of Deleuze and Guattari’s concept of "lines of flight" and its application to curriculum theorizing. What is different is that the lines of flight have since shifted and produced expanded understandings of this concept for curriculum theory and for education in general. This edition reflects the impact of events that have contributed to this shift, in particular the logic of school policy changes (...) and reforms in the past decade, and the continued explosion of social media and its effect on the collective understanding of how both "knowledge" and "education" work as forms of repression. The introduction updates the text and puts it into current debates in the field and in the larger socio-economic milieu. New dis/positions are presented that explore central questions circulating within and outside curriculum studies. Exciting scholarship on a range of topics includes notions of desire and commodities, youth culture and violence, new directions in curriculum theory, Eco-Ethical consciousness, new Deleuzian views of normality, the diffusion of technology and lines of flight in transnational curriculum inquiry. (shrink)