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.
TOC:
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: A Formidable Status Quo
Patricia Kuszler
3. The Input-Output Problem: Whose DNA Do 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 Lappé
Commentary on the Discovery Phase of Research
Sara Goering, Suzanne Holland, and Kelly A. Edwards
5. Early Assessment of 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