03814nam 2200589 a 450 991078194370332120230725054419.01-283-42793-197866134279390-19-990974-1(CKB)2550000000075452(EBL)829360(OCoLC)769344036(SSID)ssj0000570303(PQKBManifestationID)11359657(PQKBTitleCode)TC0000570303(PQKBWorkID)10592528(PQKB)11668326(MiAaPQ)EBC829360(Au-PeEL)EBL829360(CaPaEBR)ebr10520364(CaONFJC)MIL342793(EXLCZ)99255000000007545220110316d2011 uy 0engur|n|---|||||txtccrAchieving justice in genomic translation[electronic resource] re-thinking the pathway to benefit /edited by Wylie Burke ... [et al.]Oxford ;New York Oxford University Press20111 online resource (223 p.)Description based upon print version of record.0-19-539038-5 Includes bibliographical references and index.Achieving justice in genomic translation: re-thinking the pathway to benefit / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- The social, political, and economic underpinnings of biomedical research and development: a formidable status quo / Patricia Kuszler -- The input-output problem: whose DNA do we study, and why does it matter? / Stephanie Malia Fullerton -- 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 -- Early assessment of translational opportunities / Patricia Deverka and David L. Veenstra -- The power of knowledge: how carrier and prenatal screening altered the clinical goals of genetic testing / Nancy Press ... [et al.]. Commentary on the development phase of the translational cycle / Sara Goering, Suzanne Holland, and Kelly A. Edwards -- Integrating genetic tests into clinical practice: the role of guidelines / Anne-Marie Laberge and Wylie Burke -- 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 -- The role of advocacy in newborn screening / Catharine Riley and Carolyn Watts -- 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 -- Bringing the best science to bear on youth suicide: why community perspectives matter / Rosalina James and Helene Starks.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 reduceHuman geneticsResearchMoral and ethical aspectsGenomicsResearchMoral and ethical aspectsGenetic screeningMoral and ethical aspectsHuman geneticsResearchMoral and ethical aspects.GenomicsResearchMoral and ethical aspects.Genetic screeningMoral and ethical aspects.174.2/96042Burke Wylie1498705MiAaPQMiAaPQMiAaPQBOOK9910781943703321Achieving justice in genomic translation3724349UNINA