When Science Offers Salvation

In examining how advocates have transformed health research, the author of this study examines patient advocacy through the lens of research ethics.

"Patient advocates can help make research more ethical, but advocacy raises ethical issues of its own.

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.

This report is a summary of a workshop focused on exploring the role of the public in the Clinical Research Enterprise. The Clinical Research Enterprise depends upon practitioners, policy makers, and others for participation in trials, ethical review of research, and continued support of research funding. However, the role of the public has expanded beyond this traditional model as consumers have begun to demand a role in the formulation of the research agenda and in the design, review, and pursuit of research. This report identifies four major challenges to the Clinical Research Enterprise: enhancing public participation in clinical research, which includes making the system safer and faster; developing the necessary information systems that are needed to make the clinical research enterprise a coordinated and seamless whole; fostering an adequately trained workforce; and ensuring adequate funding for clinical research. In addition, the report identifies two translational blocks-from basic science into clinical practice and from the clinical identification of things that work into broader application to improve medical care and the public's health. This workshop summary addresses the contribution of the public to overcoming these obstacles.

A Pulitzer Prize–winning reporter’s moving narrative of a group of patient advocates who are revolutionizing the way medical research is conducted. For more than half a century, medical advances have been driven by investigators launching experiments inside labs. Science is often conducted in isolation and geared toward the long view. This is the story of a group of people who tried to force the lab doors open: parents whose children had been diagnosed with a rare and fatal genetic condition known as Niemann-Pick disease type C. The disease prevents cells from processing cholesterol, which leads to the progressive loss of the brain’s and the body’s ability to function. Recognizing that there would never be a treatment in time to save their children if things stayed the same, the parents set up a collaboration with researchers and doctors in search of a cure. Reconciling different views of science took work. The parents, doctors, and researchers didn't always agree—among themselves or with each other. But together they endeavored to accelerate the development of new drugs. The parents became citizen scientists, identifying promising new treatments and helping devise experiments. They recorded data about the children and co-authored scientific papers sharing findings. They engaged directly with the FDA at each step of the drug approval process. Along the way, they advanced the radical idea that science must belong to us all. Amy Dockser Marcus shows what happens when a community joins forces with doctors and researchers to try to save children’s lives. Their extraordinary social experiment reveals new pathways for treating disease and conducting research. Science may be forever changed.

This book presents a distinct, ethically robust framework for improving population health when the major causes of disease, death and disability are closely associated with human behaviors. Rather than relying on a scientific, technological strategy aimed at developing ever more powerful and effective techniques for changing behaviors, a humanistic approach recognizes the unique human capacity for dignity and moral decision-making. As an essential alternative to the scientific assumption of determinism, a humanistic framework is based on the equally viable assumption that human beings have the capacity to exercise autonomy in pursuing their life plans. If people can choose how they want to live their lives, then it is imperative to respect and cultivate their autonomy in making health-promoting decisions. A scientific approach is unsurpassed at identifying effective means for stopping and killing bacteria; the same methods are not appropriate, however, when the objective is to alter human behavior. In a humanistic framework, it is important to acknowledge that autonomous choices are not completely unrestrained—the human condition has significant physical and social limitations—and that certain readily-identifiable social groups face much greater constraints than others, most significantly due to poverty and racism. As explained and justified in this book, the most important task for health promotion is to promote autonomy, and to do this by redressing the hugely disparate yet corrigible barriers faced by people occupying distinct social positions. This project is a matter of social justice—not a scientific and technological problem to be solved, but a moral and political endeavor to engage fellow citizens—in strengthening our social institutions to enable everyone to realize their innate capacities to the fullest extent possible. The book provides ethical standards, case studies and concrete practical analogies to demonstrate the feasibility and benefits of moving the field of health promotion in a new humanistic direction.

Excerpt from Natural Salvation: The Message of Science, Outlining the First Principles of Immortal Life on the Earth We do not suppose that the unicell. Of the Silurian beach foresaw its apotheosis in the brain neuron of a Webster, a Washington, or a Lincoln. The cell but chose to do what felt best for itself; or it may even have been coerced to what it did by the merest accident of its environment. About the Publisher Forgotten Books publishes hundreds of thousands of rare and classic books. Find more at www.forgottenbooks.com This book is a reproduction of an important historical work. Forgotten Books uses state-of-the-art technology to digitally reconstruct the work, preserving the original format whilst repairing imperfections present in the aged copy. In rare cases, an imperfection in the original, such as a blemish or missing page, may be replicated in our edition. We do, however, repair the vast majority of imperfections successfully; any imperfections that remain are intentionally left to preserve the state of such historical works.