Achieving Justice in Genomic Translation

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.

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 Lappe ; 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