Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit

ISBN-13: 9780195390384 / Angielski / Twarda / 2011 / 224 str.

Wylie Burke; Kelly A. Edwards; Sara Goering

Opis

This book explores implicit choices made by researchers, policy makers, and funders regarding who benefits from society's investment in health research. The authors focus specifically on genetic research and examine whether such research tends to reduce or exacerbate existing health disparities. Using case examples to illustrate the issues, the authors trace the path of genetics research from discovery, through development and delivery, to health outcomes. Topics include breast cancer screening and treatment, autism research, pharmacogenetics, prenatal testing, newborn screening, and youth suicide prevention. Each chapter emphasizes the societal context of genetic research and illustrates how science might change if attention were paid to the needs of marginalized populations. Written by experts in genetics, health, and philosophy, this book argues that the scientific enterprise has a responsibility to respond to community needs to assure that research innovations achieve much needed health impacts.

Recenzje

The topics the book covers represent a pantheon of issues relating to genetic translation, from the political underpinnings to the historic uses of newborn screenings. The chapters covering prenatal and neonatal screenings are especially well done b Doody's Listings

O autorze

Wylie Burke, MD, PhD, is Professor and Chair of the Department of Bioethics and Humanities at the University of Washington, Seattle, WA. Kelly Edwards, PhD, is an Associate Professor in the Department of Bioethics and Humanities, Core Faculty in the Institute for Public Health Genetics. Sara Goering, PhD, is Assistant Professor of Philosophy and member of the Program on Values in Society and the Program on Disability Studies at the University of Washington, Seattle, WA. Suzanne Holland, PhD, is Professor of Ethics & Religion and Philip M. Phibbs Research Scholar at University of Puget Sound in Tacoma, WA. Susan Trinidad, MA, is a qualitative researcher in the Department of Bioethics and Humanities and a co-investigator with the Center for Genomics and Healthcare Equality.