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

Hardcover | August 24, 2011

EditorWylie Burke, Kelly A. Edwards, Sara Goering

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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 healthdisparities. 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 youthsuicide 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 aresponsibility to respond to community needs to assure that research innovations achieve much needed health impacts.

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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 healthdisparities. Using case examples to illustrate the is...

Wylie Burke, MD, PhD, is Professor and Chair of the Department of Bioethics and Humanities at the University of Washington, Seattle, WA. She is a physician, trained in internal medicine and genetics, whose work focuses on the ethical and policy implications of genetics in medicine, public health and research. She is Chair of the Insti...
Format:HardcoverDimensions:224 pages, 9.25 × 6.12 × 0.98 inPublished:August 24, 2011Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0195390385

ISBN - 13:9780195390384

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Table of Contents

1. Sara Goering, Suzanne Holland, and Kelly A. Edwards: Making Good on the Promise of Genetics: Justice in Translational Science2. Patricia Kuszler: The Social, Political, and Economic Underpinnings of Biomedical Research and Development: A Formidable Status Quo3. Stephanie Malia Fullerton: The Input-Output Problem: Whose DNA Do We Study, and Why Does It Matter?4. Holly K. Tabor and Martine Lappe: The Autism Genetic Resource Exchange: Changing Pace, Priorities, and Roles in Discovery ScienceSara Goering, Suzanne Holland, and Kelly A. Edwards: Commentary on the Discovery Phase of Research5. Patricia Deverka and David L. Veenstra: Early Assessment of Translational Opportunities6. The power of knowledge: How carrier and prenatal screening altered the clinical goals of genetic testingCommentary on the Development Phase of the Translational Cycle7. Anne-Marie Laberge and Wylie Burke: Integrating genetic tests into clinical practice: The role of guidelines8. Nora Henrikson and Wylie Burke: Genomics and the Health CommonsSara Goering, Suzanne Holland, and Kelly A. Edwards: Commentary on the Delivery Phase of the Translational Cycle9. Catharine Riley and Carolyn Watts: The Role of Advocacy in Newborn Screening10. Wylie Burke and Nancy Press: What Outcomes? Whose Benefits?Sara Goering, Suzanne Holland, and Kelly A. Edwards: Commentary on the Outcomes Phase of the Translational Cycle11. Rosalina James and Helene Starks: Bringing the "Best Science" to Bear on Youth Suicide: Why Community Perspectives Matter12. Kelly A. Edwards, Sara Goering, Suzanne Holland and Maureen Kelley: Conclusion