Chapter 2Ethics in Epidemiology: Common Misconceptions, Paradoxes, and Unresolved Questions

Abstract

Important advances occurred in ethics and epidemiology in the past few decades as highlighted in several reviews [1–4]. These advances include the development and refinement of ethics guidelines and standards of conduct for epidemiologists [5–9], the formulation of policy statements and committee reports on such topics as data sharing, privacy and confidentiality protection, and genetic testing for disease susceptibility [10–12], the development of ethics curricula in epidemiology and public health [13–18], and a burgeoning international literature on ethical and social issues in epidemiology [19–38]. Ethics case studies, with discussion questions suitable for use in the classroom or in continuing education programs for epidemiologists, have also been published and incorporated into CD‐ROM educational resources [39]. Previous articles have listed specific issues and controversies in ethics and epidemiology, and proposed organizational frameworks for thinking and communication about important developments in this area. Goodman and Prineas [14] enumerated what they considered to be the core components of a course in ethics and epidemiology (consideration of moral foundations; duties, responsibilities, and practice standards; valid consent and refusal; risks, harms, and wrongs; sponsorship and conflict of interests; communications, publication, intellectual property, and education; advocacy and intercultural conflict). Soskolne and Sieswerda [29] proposed a framework for implementing ethics in environmental epidemiology and related professions, which they divided into foundations (professional organization and statement of core values) and implementation (ethics guidelines; organizational infrastructure and established procedures; ethics education and training; ethics consultation service; and ongoing oversight and commitment). Such lists and frameworks have often included important milestones, such as the development of ethics guidelines for epidemiologists, and questions that are as yet unresolved, or only partially clarified (e.g., some issues surrounding conflicts of interest and the publication of research findings) [40–43]. Some of the key issues that have been highlighted in prior contributions represent ethical disputes, or ongoing controversies. Others relate to what I believe to be misconceptions commonly held by epidemiologists, or members of stakeholder groups. In this paper, I identify and comment on unresolved questions and key issues, with the goal of clarifying and generating further support for professional ethics in epidemiology.