Achieving justice in genomic translation: re-thinking the pathway to benefit

This book examines the ethical and social issues that arise in the conduct of genetic research, from the discovery phase, through development and delivery research, to health outcomes. 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 breastcancer 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 thatthe scientific enterprise has a responsibility to respond to community needs to assure that research innovations achieve much needed health impacts. 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 INDICE: 1. Making Good on the Promise of Genetics: Justice in Translational Science Sara Goering, Suzanne Holland, and Kelly A. Edwards 2. The Social, Political, and Economic Underpinnings of Biomedical Research and Development: AFormidable Status Quo Patricia Kuszler 3. The Input-Output Problem: Whose DNADo We Study, and Why Does It Matter? Stephanie Malia Fullerton 4. The Autism Genetic Resource Exchange: Changing Pace, Priorities, and Roles in Discovery Science Holly K. Tabor and Martine Lapp Commentary on the Discovery Phase of Research Sara Goering, Suzanne Holland, and Kelly A. Edwards 5. Early Assessmentof Translational Opportunities Patricia Deverka and David L. Veenstra 6. The power of knowledge: How carrier and prenatal screening altered the clinical goals of genetic testing Commentary on the Development Phase of the Translational Cycle 7. Integrating genetic tests into clinical practice: The role of guidelines Anne-Marie Laberge and Wylie Burke 8. Genomics and the Health Commons Nora Henrikson and Wylie Burke Commentary on the Delivery Phase of the Translational Cycle Sara Goering, Suzanne Holland, and Kelly A. Edwards 9. The Role of Advocacy in Newborn Screening Catharine Riley and Carolyn Watts 10. What Outcomes? Whose Benefits? Wylie Burke and Nancy Press Commentary on the Outcomes Phase of the Translational Cycle Sara Goering, Suzanne Holland, and Kelly A. Edwards 11. Bringing the "Best Science" to Bear on Youth Suicide: Why Community Perspectives Matter Rosalina James and Helene Starks 12. Conclusion Kelly A. Edwards, Sara Goering, Suzanne Holland and Maureen Kelley

• ISBN: 978-0-19-539038-4
• Editorial: Oxford University
• Encuadernacion: Cartoné
• Páginas: 224
• Fecha Publicación: 13/10/2011
• Nº Volúmenes: 1
• Idioma: Inglés