Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit
Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad
Oxford University Press, USA, Sep 15, 2011 - Medical - 212 pages
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.
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Justice in Translational Science
A Formidable Status Quo
Whose DNA Do We Study and Why Does It Matter?
Changing Pace Priorities and Roles in Discovery Science
5 Early Assessment of Translational Opportunities
How Carrier and Prenatal Screening Altered the Clinical Goals of Genetic Testing
The Role of Guidelines
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