Ethical Issues in Community and Patient Stakeholder-Engaged Health Research

This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder-engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

Emily E. Anderson, PhD, MPH, is Professor in the Neiswanger Institute for Bioethics and Healthcare Leadership at Loyola University Chicago’s Stritch School of Medicine. Dr. Anderson holds a PhD in health care ethics from Saint Louis University and an MPH from University of Illinois Chicago. She teaches courses on research ethics and responsible conduct of research to bioethics and biomedical sciences graduate students as well as medical students. In addition to the ethics of stakeholder engagement in research, her areas of interest and expertise include researcher and physician professionalism and misconduct; ethical issues in research with vulnerable populations; informed consent; institutional review board (IRB) policy; and the application of qualitative research techniques to the study of research ethics. She has published over 50 articles in top journals including the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, Academic Medicine, and IRB: Ethics & Human Research. Dr. Anderson currently serves as associate editor of Narrative Inquiry in Bioethics. Dr. Anderson has been a co-investigator on several federally-funded research and educational projects and recently co-authored the book 100 Questions and Answers about Research Ethics (Sage Publications, 2018) with Dr. Amy Corneli (at Duke University).