LEADER 03847nam 2200601 a 450 001 9910458020103321 005 20200520144314.0 010 $a1-283-42793-1 010 $a9786613427939 010 $a0-19-990974-1 035 $a(CKB)2550000000075452 035 $a(EBL)829360 035 $a(OCoLC)769344036 035 $a(SSID)ssj0000570303 035 $a(PQKBManifestationID)11359657 035 $a(PQKBTitleCode)TC0000570303 035 $a(PQKBWorkID)10592528 035 $a(PQKB)11668326 035 $a(MiAaPQ)EBC829360 035 $a(Au-PeEL)EBL829360 035 $a(CaPaEBR)ebr10520364 035 $a(CaONFJC)MIL342793 035 $a(EXLCZ)992550000000075452 100 $a20110316d2011 uy 0 101 0 $aeng 135 $aur|n|---||||| 181 $ctxt 182 $cc 183 $acr 200 00$aAchieving justice in genomic translation$b[electronic resource] $ere-thinking the pathway to benefit /$fedited by Wylie Burke ... [et al.] 210 $aOxford ;$aNew York $cOxford University Press$d2011 215 $a1 online resource (223 p.) 300 $aDescription based upon print version of record. 311 $a0-19-539038-5 320 $aIncludes bibliographical references and index. 327 $aAchieving 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. 330 $aThis 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 606 $aHuman genetics$xResearch$xMoral and ethical aspects 606 $aGenomics$xResearch$xMoral and ethical aspects 606 $aGenetic screening$xMoral and ethical aspects 608 $aElectronic books. 615 0$aHuman genetics$xResearch$xMoral and ethical aspects. 615 0$aGenomics$xResearch$xMoral and ethical aspects. 615 0$aGenetic screening$xMoral and ethical aspects. 676 $a174.2/96042 701 $aBurke$b Wylie$0914174 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910458020103321 996 $aAchieving justice in genomic translation$92048241 997 $aUNINA