Achieving Justice in Genomic Translation : Rethinking the Pathway to Benefit

This book examines ethical and social issues that arise in the conduct of genetic research, from the discovery phase, through development and delivery research, to health outcomes. The authors argue that research at every phase needs to be responsive to community needs to assure public health benefits and reduce, rather than exacerbate, health disparities.

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 Institute of Medicine Roundtable on Translating Genome-based Research for Health and past President of the American Society of Human Genetics.

Kelly Edwards, PhD, is an Associate Professor in the Department of Bioethics and Humanities, Core Faculty in the Institute for Public Health Genetics. She is also a co-investigator with the NHGRI-funded Center for Genomics and Healthcare Equality, the NCRR-funded Institute for Translational Health Sciences, and the NIEHS-funded Center for Ecogenetics and Environmental Health.

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. She specializes in bioethics and her work combines feminist theory, disability studies, and concerns about justice for marginalized populations.

Suzanne Holland, PhD, is Professor of Ethics & Religion and Philip M. Phibbs Research Scholar at University of Puget Sound in Tacoma, WA. She is an Affiliate Professor at University of Washington's School of Medicine, Department of Bioethics and Humanities, and a past Board member of the American Society for Bioethics and Humanities. Her work focuses on issues of justice, gender, new genetic technologies, and the commodification of the human body.

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. Previously, she was Executive Director of Product Development for a company specializing in telephone nurse triage, patient education, and behavior-change counseling services for chronically ill patients.