When Science Offers Salvation Patient Advocacy and Research Ethics

Biomedical research today has a high public profile, largely because of patient advocacy. Following in the footsteps of HIV/AIDS activists, advocates representing an array of patient groups are now vocal partners in the research enterprise. Advocates want research practices and policies to be more responsive to the people who must live with the burdens of illness. This book shows how advocates have transformed health research, often -- but not always -- for the better. Dresser is the first to examine patient advocacy through the lens of research ethics. She reveals the many ways in which a quest for cures and improved therapies shapes advocacy work. She exposes the bright and dark sides of patients' expanded opportunities to enroll in clinical trials and join researchers in planning and evaluating studies. She considers the virtues and drawbacks of giving patients more influence over how the government invests its research dollars. She argues that advocates should do more to promote ethical human studies and responsible media reporting about research. Patient advocates can help make research more ethical, but advocacy raises ethical issues of its own. This book clearly and vividly recounts the advocacy contribution to research and explores the thorny ethical issues facing research advocates.

Rebecca Dresser, J.D. is a Professor of Law and Ethics in Medicine at Washington University in Saint Louis.