When Science Offers Salvation: Patient Advocacy and Research Ethics

Hardcover | March 15, 2001

byRebecca Dresser

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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 bemore 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 joinresearchers 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.

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From the Publisher

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 bemore responsive to the people who must live ...

Rebecca Susan Dresser is at Washington University.

other books by Rebecca Dresser

Format:HardcoverPublished:March 15, 2001Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0195143132

ISBN - 13:9780195143133

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Table of Contents

1. Patient Advocacy and the Changing Research Environment2. Advocates on the Research Team - Shaping and Assessing Science3. Hope Versus Hypothesis Testing: Expanding Access to Experimental Interventions4. Fairness in Allocating Government Research Funds5. Public Participation in Allocating Government Research Funds6. Advocates in Research Ethics Oversight: A Voice for the Public?7. Advocacy for Accuracy in Research Reporting

Editorial Reviews

"A thorough and well-crafted book, When Science Offers Salvation is a fine beginning for a necessary and provocative discussion of patient advocacy, medical research, and the shared goals of doing what is best for the patient, given te vagaries of human biology."--The Pharos/Summer 2002