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* Document1Rajan,KaushikSunder,ed.LIVELYCAPITAL:BIOTECHNOLOGIES,ETHICS,ANDGOVERNANCEINGLOBALMARKETSDurham,NC:DukeUniversityPress,2012.511p.Callnumber:TP248.23.L582012
* Document2Stanchevici,DmitriSTALINISTGENETICS:THECONSTITUTIONALRHETORICOFT.D.LYSENKOAmityville,NY:Baywood,2012.194p.Callnumber:QH31.L95S732012
Document3Solihu,A.K.H.Ambali,A.R.DissolvingtheengineeringmoraldilemmaswithintheIslamicethicolegalpraxesScienceandEngineeringEthics2011March17(1):133147
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* Document4Lone,FrankMYBEAUTIFULGENOME:EXPOSINGOURGENETICFUTURE,ONEQUIRKATATIMEOxford:Oneworld,2011.313p.Callnumber:QH447.F73132011
Document5Tramper,JohannesandZhu,YangMODERNBIOTECHNOLOGY:PANACEAORNEWPANDORA'SBOX?Wageningen:WageningenAcademicPublishers,2011.284p.
* Document6Montoya,MichaelJ.
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MAKINGTHEMEXICANDIABETIC:RACE,SCIENCE,ANDTHEGENETICSOFINEQUALITYBerkeley:UniversityofCaliforniaPress,2011.259p.Callnumber:RA645.D5M662011
* Document7Korthals,Michiel,ed.GENOMICS,OBESITYANDTHESTRUGGLEOVERRESPONSIBILITIESDordrecht/NewYork:Springer,2011.249p.Callnumber:RC628.G462011
* Document8Burke,WylieEdwards,KellyGoering,SaraHolland,SuzanneandTrinidad,SusanBrown,eds.ACHIEVINGJUSTICEINGENOMICTRANSLATION:RETHINKINGTHEPATHWAYTOBENEFITOxford/NewYork:OxfordUniversityPress,2011.Callnumber:QH438.7.A262011
* Document9Jasanoff,Sheila,ed.REFRAMINGRIGHTS:BIOCONSTITUTIONALISMINTHEGENETICAGECambridge,MA:MITPress,2011.310p.Callnumber:QH438.7.R4382011
Document10Ahmad,Badi'ah'AliAlBasmahalwirathiyahwaatharuhafiithbatalnasabwanafyihi,dirasahfiqhiyahmuqaranah=DNAfingerprintinganditsauthorityinestablishingornegatingpaternity,acomparativejurisprudentialstudyAlexandria,Egypt:DaralFikralJami'i,2011.152p.
* Document11Kaebnick,GregoryE.,ed.THEIDEALOFNATURE:DEBATESABOUTBIOTECHNOLOGYANDTHEENVIRONMENTBaltimore,MD:JohnsHopkinsUniversityPress,2011.208p.Callnumber:QH332.I3372011
Document12Rana,FazaleCREATINGLIFEINTHELAB:HOWNEWDISCOVERIESINSYNTHETICBIOLOGYMAKEACASEFORTHECREATORGrandRapids,MI:BakerBooks,2011.235p.Callnumber:BL255.R372011
Document13Gerlach,NeilHamilton,SherylN.Sullivan,RebeccaandWalton,PriscillaL.
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BECOMINGBIOSUBJECTS:BODIES,SYSTEMS,TECHNOLOGIESToronto/Buffalo,NY:UniversityofTorontoPress,2011.216p.Callnumber:TP248.23.B432011
* Document14Hongladarom,SorajGENOMICSANDBIOETHICS:INTERDISCIPLINARYPERSPECTIVES,TECHNOLOGIES,ANDADVANCEMENTSHershey,PA:MedicalInformationScienceReference,2011.307p.Callnumber:QH438.7.G46152011
* Document15Plows,AlexandraDEBATINGHUMANGENETICS:CONTEMPORARYISSUESINPUBLICPOLICYANDETHICSLondon/NewYork:Routledge,2011.232p.Callnumber:RB155.P5662011
Document16Macilwain,ColinTalkingthetalk:withouteffectivepublicengagement,therewillbenosyntheticbiologyinEuropeNature2010June17465(7300):867
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Document17Mader,MaryBethFoucault's`Metabody'JournalofBioethicalInquiry2010June7(2):187203
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Document18Evans,JamesP.Burke,WylieKhoury,MuinTherulesremainthesameforgenomicmedicine:thecaseagainst"reversegeneticexceptionalism".GeneticsinMedicine2010June12(6):342343
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Document19Deamer,DavidLifeafterthesyntheticcell:originoflifejustgotcloserNature2010May27465(7297):424
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Document20Collins,JimLifeafterthesyntheticcell:gotparts,needmanualNature2010May27465(7297):424
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Document21Fussenegger,MartinLifeafterthesyntheticcell:nature'slimitsstillapplyNature2010May27465(7297):424
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Document22Benner,StevenLifeafterthesyntheticcell:synthesisdrivesinnovationNature2010May27465(7297):423
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Document23Caplan,ArthurLifeafterthesyntheticcell:theendofvitalismNature2010May27465(7297):423
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Document24Rasmussen,SteenLifeafterthesyntheticcell:bottomup'willbemoretellingNature2010May27465(7297):422423
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Document25Church,GeorgeLifeafterthesyntheticcell:nowlet'slowercostsNature2010May27465(7297):422
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Document26Bedau,MarkLifeafterthesyntheticcell:thepowerandthepitfallsNature2010May27465(7297):422
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Document27Challengesofourownmaking:Thesuccessfultransplantationofasynthesizedgenomehighlightsunresolvedethicalandsecurityissuesposedbysyntheticbiology.[editorial]Nature2010May27465(7297):397
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Document28Katsnelson,AllaSyntheticgenomeresetsbiotechgoals.[news]Nature2010May27465(7297):406
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Document29Pennisi,ElizabethGenomics.Syntheticgenomebringsnewlifetobacterium.[news]Science2010May21328(5981):958959
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Document30Callaway,EwenDNAdilemma:settlementhighlightswiderissuesposedbygeneresearch[news]NewScientist2010May1206(2758):10
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Document31Yamaguchi,TomikoSuda,FumiakiChangingsocialorderandthequestforjustification:GMOcontroversiesinJapanScience,Technology,andHumanValues2010May35(3):382407
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Document32Mitchell,RobertNationalBiobanks:ClinicalLabor,RiskProduction,andtheCreationofBiovalue.Science,Technology,andHumanValues2010May35(3):330355Abstract:Thedevelopmentofgenomicshasdramaticallyexpandedthescopeofgeneticresearch,andcollectionsofgeneticbiosampleshaveproliferatedincountrieswithactivegenomicsresearchprograms.Inthisessay,weconsideraparticularkindofcollection,nationalbiobanks.Nationalbiobanksareoftenpresentedbyadvocatesasaneconomic"resource"thatwillbeusedbybothbasicresearchersandacademicbiologists,aswellasbypharmaceuticaldiagnosticandclinicalgenomicscompanies.Althoughnationalbiobankshavebeenthesubjectofintenseinterestinrecentsocialscienceliterature,mostpriorworkonthistopicfocuseseitheronbioethicalissuesrelatedtobiobanks,suchasthequestionofinformedconsent,oronthepossibilitiesforscientificcitizenshipthattheymakepossible.Weemphasize,bycontrast,theeconomicaspectofbiobanks,focusingspecificallyonthewayinwhichnationalbiobankscreatebiovalue.Ouremphasisontheeconomicaspectofbiobanksallowsustorecognizetheimportanceofwhatwecallclinicallaborthatis,theregularized,embodiedworkthatmembersofthenationalpopulationareexpectedtoperformintheirroleasbiobankparticipantsinthecreationofbiovaluethroughbiobanks.Moreover,itallowsustounderstandhowthetechnicalwayinwhichnationalbiobankslinkclinicallabortodatabasesaltersbothmedicalandpopularunderstandingsofriskforcommondiseasesandconditions.
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Document33Truyers,CarlaKellen,ElianeArbyn,MarcTrommelmans,LeenNys,HermanHensen,KarenAertgeerts,BertBartholomeeusen,StefaanHansson,MatsBuntinx,FrankTheuseofhumantissueinepidemiologicalresearchethicalandlegalconsiderationsintwobiobanksinBelgium.Medicine,HealthCare,andPhilosophy2010May13(2):169175Abstract:ThispaperdiscussesthelegalimplicationsofsettinguptwonewbiobanksinBelgium.Thefirstishospitalbasedandwillarchivetissuefrompatientswithhaematologiccancer,whereasthesecondislinkedtoageneralpracticebasedmorbidityregistryandwillinvolvestorageofbloodsamples.Todate,Belgiumhasnospecificlegislationthatregulatesstorageofhumantissueandrelateddatabases.Severalissuesconcerningtheprotectionofindividualswithregardtotheprocessingofpersonalmedicaldataarediscussedfromtheexistingprivacylegislation.Wewilladdresstheprincipleofconsent(broadversusspecific)andthetypeofdatarecorded(anonymous,encodedandidentifiable)forbothbiobanks.
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Document34CouzinFrankel,JenniferDNAreturnedtotribe,raisingquestionsaboutconsent.[news]Science2010April30328(5978):558
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Document35Thehumangenomeatten.Nearlyadecadeonfromthecompletionofthedraftsequenceofthehumangenome,researchersshouldworkwiththesameintensityandfocustoapplytheresultstohealth.[editorial]Nature2010April1464(7289):649650
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Document36Fan,RuipingAConfucianreflectionongeneticenhancement.AmericanJournalofBioethics2010April10(4):6270Abstract:ThisessayexploresaproperConfucianvisionongeneticenhancement.ItarguesthatwhileConfucianscanacceptaformalstartingpointthatMichaelSandelproposesinhisethicsofgiftedness,namely,thatchildrenshouldbetakenasgifts,Confucianscannotadopthisgeneraliststrategy.TheessayprovidesaConfucianfullethicsofgiftednessbyaddressingaseriesofrelevantquestions,suchaswhatkindofgiftschildrenare,wherethegiftsarefrom,inwhichwaytheyaregiven,andforwhatpurposetheyaregiven.ItindicatesthatConfuciansshouldsortoutdifferenttypesofenhancementandbringthemtothetestoftheConfucianvaluesintermsofbothConfucianvirtueprinciplesandspecificritualrules.ItconcludesthatConfucianscanacceptsometypesofenhancementbutmustrejectothers.
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Document37McCullough,LaurenceB.Cosmeticgeneticsandvirtuebasedrestraintsonautonomy.AmericanJournalofBioethics2010April10(4):7172
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Document38
http://ethicslab.org/openurl/gt/0000331966/http://www.springerlink.com/content/102960/http://ethicslab.org/openurl/wc/0000331945/http://ethicslab.org/openurl/gt/0000331945/http://www.sciencemag.org/content/vol328/issue5978/http://ethicslab.org/openurl/wc/0000331842/http://ethicslab.org/openurl/gt/0000331842/http://www.nature.com/nature/journal/v464/n7289/http://ethicslab.org/openurl/wc/0000331420/http://ethicslab.org/openurl/gt/0000331420/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331419/http://ethicslab.org/openurl/gt/0000331419/http://www.bioethics.net/journal/issues.php
Rasmussen,LisaM.Confucianism'schallengetoWesternbioethics.AmericanJournalofBioethics2010April10(4):7374
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Document39Schanker,BenjaminRelativisticperspectivesofgeneticenhancement:achallengetofutureprogress.AmericanJournalofBioethics2010April10(4):7476
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Document40Horowitz,FrancesDegenIt'snotsosimple:amorecomplexbehavioralandpsychologicalperspectiveongeneticenhancement(anddiminishment).AmericanJournalofBioethics2010April10(4):7678
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* Document41Mladen,PecujlijaDorde,CosicAnOrthodoxChristianreflection:geneticenhancementmustnotbethecreationprimacyproblembetweenmanandGod.AmericanJournalofBioethics2010April10(4):7880
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Document42Wu,KevinChienChangWhatwouldsomeConfuciansthinkaboutgeneticenhancementfromtheperspectiveof"humannature"?AmericanJournalofBioethics2010April10(4):8082
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Document43Chan,Joseph
http://ethicslab.org/openurl/wc/0000331418/http://ethicslab.org/openurl/gt/0000331418/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331417/http://ethicslab.org/openurl/gt/0000331417/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331416/http://ethicslab.org/openurl/gt/0000331416/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331415/http://ethicslab.org/openurl/gt/0000331415/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331414/http://ethicslab.org/openurl/gt/0000331414/http://www.bioethics.net/journal/issues.php
Concernsbeyondthefamily.AmericanJournalofBioethics2010April10(4):8284
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Document44Tsai,DanielFuChangReflectingonthenatureofConfucianethics.AmericanJournalofBioethics2010April10(4):8486
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Document45Abbott,AlisonTurkishlawcouldcripplebioscience[news]Nature2010March25464(7288):478
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Document46Vieth,AndreasConceptualandethicalproblemsintheepistemologyofgeneticinformationNewGeneticsandSociety2010March29(1):103116
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Document47Holmberg,ToraTailtales:howresearchershandletransgenicdilemmasNewGeneticsandSociety2010March29(1):3754
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Document48Haddow,GillBruce,AnnCalvert,JaneHarmon,ShawnH.E.Marsden,WendyNot"human"enoughtobehumanbutnot"animal"enoughtobeanimalthecaseoftheHFEA,cybridsandxenotransplantationintheUKNewGeneticsandSociety2010March29(10):317
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Document49Dye,DanielleE.Youngs,LeanneMcNamara,BeverleyGoldblatt,JackO'Leary,PeterThedisclosureofgeneticinformation:ahumanresearchethicsperspectiveJournalofBioethicalInquiry2010March7(1):103109
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Document50Wolf,LeslieE.Bouley,TimothyA.McCulloch,CharlesE.Geneticresearchwithstoredbiologicalmaterials:ethicsandpractice.IRB:EthicsandHumanResearch2010MarchApril32(2):718
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Document51Lemke,AmyA.Trinidad,SusanB.Edwards,KarenL.Starks,HeleneWiesner,GeorgiaL.Attitudestowardgeneticresearchreview:resultsfromanationalsurveyofprofessionalsinvolvedinhumansubjectsprotection.JournalofEmpiricalResearchonHumanResearchEthics2010March5(1):8391Supportedby:NHGRIfundedpublicationGrantsP50HG003374,P50HG003390andU01HG004609Abstract:Therecentexpansionofhumangeneticsresearchhasraisedcomplexethicalandregulatoryissues.However,fewpublishedreportsdescribetheviewsofprofessionalsinvolvedinhumansubjectsprotection(HSP)regardingtherisksandbenefitsofgeneticresearch.Thisanonymous,webbasedstudyelicitedtheopinionsof208HSPprofessionalsaboutreviewofgeneticresearch.Themajorityofrespondentsfeltthatdifferentguidanceisneededforvariousaspectsofgeneticprotocolreviewcomparedwithothertypesofhumansubjectsresearch.Importantly,opinionsweredividedonspecificgeneticresearchissues,suchaswhatconstituteshumansubjectsresearch,whentoreconsent,andthelikelihoodandrisksofresearchparticipantidentification.Findingsfromthisstudyillustratetheneedforacollaborativeapproachtoethicsoversightinthereviewandconductofgeneticresearch.
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Document52Tucker,JonathanB.DoubleedgedDNA:preventingthemisuseofgenesynthesisIssuesinScienceandTechnology2010Spring26(3):2332
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Document53Anabsurdlaw.Turkey'sgovernmentisabouttopasslegislationthatcouldcripplethecountry'sbiological
http://ethicslab.org/openurl/wc/0000330855/http://ethicslab.org/openurl/gt/0000330855/http://www.informaworld.com/smpp/title~db=jour~content=g919665103http://ethicslab.org/openurl/wc/0000330807/http://ethicslab.org/openurl/gt/0000330807/http://www.springerlink.com/content/j77np47n3w2n/http://ethicslab.org/openurl/wc/0000330753/http://ethicslab.org/openurl/gt/0000330753/http://ethicslab.org/openurl/wc/0000330714/http://ethicslab.org/openurl/gt/0000330714/http://ethicslab.org/openurl/wc/0000330704/http://ethicslab.org/openurl/gt/0000330704/
research[editorial]Nature2010February25463(7284):1000
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Document54Thescarybusinessoftinkeringwithlife[editorial]NewScientist2010February20205(2748):3
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Document55Yesornotoknowingifyouhaveepsilon4?NewScientist2010February13205(2747):12
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* Document56Bagla,PallavaIndia.Afteracrimoniousdebate,IndiarejectsGMeggplant[news]Science2010February12327(5967):767
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Document57Melas,PhilippeA.Sjholm,LouiseK.Forsner,TordEdhborg,MaigunJuth,NiklasForsell,YvonneLavebratt,CatharinaExaminingthepublicrefusaltoconsenttoDNAbiobanking:empiricaldatafromaSwedishpopulationbasedstudy.JournalofMedicalEthics2010February36(2):938Abstract:OBJECTIVES:ToinvestigateempiricallythemotivationsfornotconsentingtoDNAbiobankinginaSwedishpopulationbasedstudyandtodiscusstheimplications.DESIGN:Structuredquestionnairesandsemistructuredinterviews.SETTING:Alongitudinalepidemiologicalproject(PART)ongoingsince1998inStockholm,Sweden.TheDNAcollectionwavetookplaceduring20067.PARTICIPANTS:903individualscompletedthequestionnaire(participationrate36%)and23wereinterviewed.Allindividualshadparticipatedinbothnongeneticwavesoftheproject,butrefusedtocontributesalivasamplesduringtheDNAcollectionwave.MAINOUTCOMEMEASURES:MotivationsbehindrefusingtoconsenttoDNAbiobanking,withsubsequentfocusonparticipants'explanationsregardingthisunwillingness.RESULTS:PublicrefusaltoconsenttoDNAbiobanking,asrevealedbythequestionnaire,wasmainlyexplainedbyalackofpersonalrelevanceofDNAcontributionandfeelingsofdiscomfortrelatedtotheDNAbeingusedforpurposesotherthantherespectivestudy.Interviewsofindividualsrepresentingthesecondmotivation,revealedasignificantmistrustofDNAbiobankstudies.Theunderlyingbeliefsandattitudeswereassociatedwithconcernsaboutintegrity,privacy,suspiciousnessandinsecurity.However,mostintervieweesweresupportiveofgeneticresearchperseandinterpretedtheirmistrustinthelightofdistressingenvironmentalinfluences.CONCLUSION:Theresultssuggestaneedforguidelinesonbenefitsharing,aswellastrustworthyandstablemeasurestomaintainprivacy,asameansforincreasingpersonalrelevanceandtrustamongpotentialparticipantsingeneticresearch.Measurestakenfrombiobanksseeminsufficientinmaintainingandincreasingtrust,suggestingthatbroadersocietalmeasuresshouldbetaken.
http://ethicslab.org/openurl/wc/0000330608/http://ethicslab.org/openurl/gt/0000330608/http://www.nature.com/nature/journal/v463/n7284/http://ethicslab.org/openurl/wc/0000330588/http://ethicslab.org/openurl/gt/0000330588/http://ethicslab.org/openurl/wc/0000330562/http://ethicslab.org/openurl/gt/0000330562/http://ethicslab.org/openurl/wc/0000330550/http://ethicslab.org/openurl/gt/0000330550/http://www.sciencemag.org/content/vol327/issue5967/
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Document58BusseyJones,JadaGarrett,JoanneHenderson,GailMoloney,MaireadBlumenthal,ConnieCorbieSmith,GailTheroleofraceandtrustintissue/blooddonationforgeneticresearchGeneticsinMedicine2010February12(2):116121Supportedby:NHGRIfundedpublicationGrantsP50HG004488andR01HG00283002
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Document59Geddes,LindaForjustice,shareDNAdatabasesNewScientist2010January9204(2742):89
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Document60Timeforfullandfrankdisclosure[editorial]NewScientist2010January9204(2742):5
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Document61Hallowell,N.Cooke,S.Crawford,G.Lucassen,A.Parker,M.Snowdon,C.Aninvestigationofpatients'motivationsfortheirparticipationingeneticsrelatedresearch.JournalofMedicalEthics2010January36(1):3745Abstract:DESIGN:Qualitativeinterviewstudy.PARTICIPANTS:FiftyninepatientswithafamilyhistoryofcancerwhoattendaregionalcancergeneticsclinicintheUKwereinterviewedabouttheircurrentandpreviousresearchexperiences.Findings:Intervieweesgavearangeofexplanationsforresearchparticipation.Thesewerecategorisedas(a)socialresearchparticipationbenefitsthewidersocietybyprogressingscienceandimprovingtreatmentforeveryone(b)familialresearchparticipationmayimprovehealthcareandbenefitcurrentorfuturegenerationsoftheparticipant'sfamilyand(c)personalresearchparticipationprovidestherapeuticornontherapeuticbenefitsforoneself.CONCLUSIONS:Wediscussthedistinctiondrawnbetweenmotivesforresearchparticipationfocuseduponself(personal)andothers(familial/social),andobservethatpersonal,socialandfamilialmotivescanbeseenasinterdependent.Forexample,researchparticipationthatisundertakentobenefitothers,particularlyrelatives,mayalsoofferanumberofpersonalbenefitsforself,suchasenablingparticipantstofeelthattheyhavedischargedtheirsocialorfamilialobligations.Wearguefortheneedtomoveawayfromsimple,static,individualisednotionsofresearchparticipationtoamorecomplex,dynamicandinherentlysocialaccount.
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Document62Resnik,DavidB.Genomicresearchdata:openvs.restrictedaccess.IRB:EthicsandHumanResearch2010JanuaryFebruary32(1):16
http://ethicslab.org/openurl/wc/0000330382/http://ethicslab.org/openurl/gt/0000330382/http://ethicslab.org/openurl/wc/0000330199/http://ethicslab.org/openurl/gt/0000330199/http://ethicslab.org/openurl/wc/0000330031/http://ethicslab.org/openurl/gt/0000330031/http://ethicslab.org/openurl/wc/0000330029/http://ethicslab.org/openurl/gt/0000330029/http://ethicslab.org/openurl/wc/0000329822/http://ethicslab.org/openurl/gt/0000329822/http://ethicslab.org/openurl/wc/0000329552/
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Document63Kaebnick,GregoryE.Newstandardsforgenesynthesisscreening.HastingsCenterReport2010JanuaryFebruary40(1):49
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Document64Midgley,MaryTHESOLITARYSELF:DARWINANDTHESELFISHGENEDurham:Acumen,2010.154p.Callnumber:B1647.M473S652010
* Document65Nowotny,HelgaandTesta,GiuseppeNAKEDGENES:REINVENTINGTHEHUMANINTHEMOLECULARAGECambridge,MA:MITPress,2010.144p.Callnumber:QH506.N69132010
Document66Hodge,RussTHEFUTUREOFGENETICS:BEYONDTHEHUMANGENOMEPROJECTNewYork:FactsonFile,2010.204p.Callnumber:QH437.H632010
* Document67Andrews,LoriB.Mehlman,MaxwellJ.andRothstein,MarkA.GENETICS:ETHICS,LAW,ANDPOLICYSt.Paul,MN:West/ThomsonReuters,2010.963p.
Document68Peacock,KathyWilsonBIOTECHNOLOGYANDGENETICENGINEERINGNewYork:FactsonFile,2010.349p.Callnumber:TP248.215.P432010
Document69
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AbuKhuzaymah,Asma'Manduh'Abdal'AzzWasa'ilithbatalnasabbaynaalqadmwaalmu'asir,dirasahfiqhiyahmuqaranah=Pastandcontemporarymethodsofestablishingpaternity,acomparativejurisprudentialstudyAlexandria,Egypt:DaralFikralJami'i,2010.374p.
Document70Naji,AnasHasanMuhammadAlBasmahalwirathiyahwamadamashru'iyatihafithbatwanafyalnasab,dirasahmuqranahfdaw'alqanunalwad'waalshariiahalIslamiyah=DNAfingerprintinganditsauthorityinestablishingornegatingpaternity,acomparativestudyinlightofpositivelawandIslamicshariaAlexandria,Egypt:DaralJami'ahalJadidah,2010.358p.
* Document71EuropeanGrouponEthicsinScienceandNewTechnologiestotheEuropeanCommissionETHICSOFSYNTHETICBIOLOGY:BRUSSELS,17NOVEMBER2009:OPINIONNO.25Luxembourg:PublicationsoftheEuropeanUnion,2010.101p.Callnumber:QH332.E882010
Document72Buchholz,KlausandCollins,JohnCONCEPTSINBIOTECHNOLOGY:HISTORY,SCIENCEANDBUSINESSWeinheim,Germany:WileyVCHVerlag,2010.471p.Callnumber:TP248.2.B832010
Document73Mutawalli,Amani'AliDawabitistikhdamalhandasahalwirathiyahwaaltalqihalsina'i=GuidelinesfortheuseofgeneticengineeringandartificialinseminationinjurisprudenceandlawCairo,Egypt:DaralKitabalHadth2010.238p.
* Document74Merino,Nol,ed.HUMANGENETICSDetroit:GreenhavenPress/GaleCengageLearning,2010.204p.Callnumber:QH431.H83562010
Document75Tagliaferro,LindaGENETICENGINEERING:MODERNPROGRESSORFUTUREPERIL?Minneapolis:TwentiethFirstCenturyBooks,2010.160p.Callnumber:QH442.T32582010
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* Document76UnitedStates.PresidentialCommissionfortheStudyofBioethicalIssuesNEWDIRECTIONS:THEETHICSOFSYNTHETICBIOLOGYANDEMERGINGTECHNOLOGIESWashington,DC:PresidentialCommissionfortheStudyofBioethicalIssues,2010.178p.Callnumber:QH332.U5452010
http://www.bioethics.gov/documents/syntheticbiology/PCSBISyntheticBiologyReport12.16.10.pdf(linkmaybeoutdated)
Document77Wexler,BarbaraGENETICSANDGENETICENGINEERINGDetroit:GaleCengageLearning,2010.175p.Callnumber:QH438.7.W4952010
Document78Goetz,ThomasTHEDECISIONTREE:TAKINGCONTROLOFYOURHEALTHINTHENEWERAOFPERSONALIZEDMEDICINENewYork:RodaleBooks,2010.294p.Callnumber:RA776.95.G642010
* Document79Pfleiderer,G.Brahier,G.andLindpaintner,K.,eds.GENETHICSANDRELIGIONBasel/NewYork:Karger,2010.154p.Callnumber:QH438.7.G41162010
Document80Schoemaker,PaulJ.H.andSchoemaker,JoyceA.CHIPS,CLONES,ANDLIVINGBEYOND100:HOWFARWILLTHEBIOSCIENCESTAKEUS?UpperSaddleRiver,NJ:FTPressScience,2010.216p.Callnumber:TP248.215S362010
Document81Seidel,JohannesSCHONMENSCHODERNOCHNICHT?ZUMONTOLOGISCHENSTATUSHUMANBIOLOGISCHERKEIMEStuttgart:Kohlhammer,2010.438p.Callnumber:QH331.S432010
* Document82Ong,AihwaandChen,NancyN.,eds.ASIANBIOTECH:ETHICSANDCOMMUNITIESOFFATEDurham,NC:DukeUniversityPress,2010.335p.
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Document83Bolouri,HamidPERSONALGENOMICSANDPERSONALIZEDMEDICINELondon:ImperialCollegePressSingapore/Hackensack,NJ:Distributedby:WorldScientificPublishing,2010.259p.Callnumber:RB155.B6652010
Document84Avise,JohnC.INSIDETHEHUMANGENOME:ACASEFORNONINTELLIGENTDESIGNOxford/NewYork:OxfordUniversityPress,2010.222p.Callnumber:QH325.A8952010
Document85Angrist,MishaHEREISAHUMANBEING:ATTHEDAWNOFPERSONALGENOMICSNewYork:Harper,2010.341p.Callnumber:QH447.A542010
Document86Davies,KevinTHE$1,000GENOME:THEREVOLUTIONINDNASEQUENCINGANDTHENEWERAOFPERSONALIZEDMEDICINENewYork:FreePress,2010.340p.Callnumber:QH445.2.D3682010
Document87Marion,RobertGENETICROUNDS:ADOCTOR'SENCOUNTERSINTHEFIELDTHATREVOLUTIONIZEDMEDICINENewYork:KaplanPublishing,2010.278p.Callnumber:RB155.M3452010
Document88Forg,NikolausKollek,RegineArning,MarianKruegel,TinaandPetersen,ImmeETHICALANDLEGALREQUIREMENTSOFTRANSNATIONALGENETICRESEARCHMnchen:VerlagC.H.Beck[and]Oxford/Portland,OR:HartPublishing,2010.141p.Callnumber:K3611.I5E872010
Document89Bernier,LouiseJUSTICEINGENETICS:INTELLECTUALPROPERTYANDHUMANRIGHTSFROMACOSMOPOLITAN
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LIBERALPERSPECTIVECheltenham,UK/Northampton,MA:EdwardElgar,2010.255p.Callnumber:QH438.7.B472010
Document90Peterson,JamesC.CHANGINGHUMANNATURE:ECOLOGY,ETHICS,GENES,ANDGODGrandRapids,MI:WilliamB.Eerdmans,2010.259p.Callnumber:BR110.P422010
Document91Hyry,MattiRATIONALITYANDTHEGENETICCHALLENGE:MAKINGPEOPLEBETTER?Cambridge/NewYork:CambridgeUniversityPress,2010.271p.Callnumber:QH442.H3952010
* Document92Elger,BerniceETHICALISSUESOFHUMANGENETICDATABASES:ACHALLENGETOCLASSICALHEALTHRESEARCHETHICSFarnham,Surrey,England/Burlington,VT:Ashgate,2010.318p.Callnumber:RB155.E4552010
* Document93Cooley,DennisR.TECHNOLOGY,TRANSGENICSANDAPRACTICALMORALCODEDordrecht:Springer,2010.271p.Callnumber:QH438.7.C6642010
* Document94Collins,FrancisS.LANGUAGEOFLIFE:DNAANDTHEREVOLUTIONINPERSONALIZEDMEDICINENewYork:Harper,2010.332p.Callnumber:RB155.65.C652009
Document95Judd,SandraJ.,ed.GENETICDISORDERSSOURCEBOOK:BASICCONSUMERHEALTHINFORMATIONABOUTHEREDITARYDISORDERS,INCLUDINGDISORDERSRESULTINGFROMABNORMALITIESINSPECIFICGENES,SUCHASHEMOPHILIA,SICKLECELLDISEASE,ANDCYSTICFIBROSIS,CHROMOSOMALDISORDERS,SUCHASDOWNSYNDROME,FRAGILEXSYNDROME,ANDKLINEFELTERSYNDROME,ANDCOMPLEXDISORDERSWITHENVIRONMENTALANDGENETICCOMPONENTS,SUCHASALZHEIMERDISEASE,CANCER,HEARTDISEASE,ANDOBESITY,ALONGWITHINFORMATIONABOUTTHEHUMANGENOMEPROJECT,GENETICTESTINGANDPRIVACYCONCERNS,THESPECIALNEEDSOFCHILDRENWITHGENETICDISORDERS,CURRENTRESEARCHINITIATIVES,AGLOSSARYOFTERMS,ANDADIRECTORYOFRESOURCESFORFURTHERHELPANDINFORMATION
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Detroit,MI:Omnigraphics,2010.759p.Callnumber:RB155.5.G4552010
Document96O'Leary,PeterZimmern,R.L.Genomicsandpublichealth:translatingresearchintopublicbenefit.[editorial]PublicHealthGenomics201013(4):193196
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Document97O'Doherty,KieranC.Hawkins,A.Structuringpublicengagementforeffectiveinputinpolicydevelopmentonhumantissuebiobanking.PublicHealthGenomics201013(4):197206
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Document98Meslin,EricM.Thevalueofusingtopdownandbottomupapproachesforbuildingtrustandtransparencyinbiobanking.PublicHealthGenomics201013(4):207214
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Document99Knoppers,BarthaMariaLeroux,T.Doucet,H.Godard,B.Laberge,C.StantonJean,M.Fortin,S.Cousineau,J.Monardes,C.Girard,N.Levesque,L.Durand,C.Farmer,Y.DionLabrie,M.Bouthillier,M.E.Avard,D.Framinggenomics,publichealthresearchandpolicy:pointstoconsider.PublicHealthGenomics201013(4):224234
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Document100Hahn,SusanLetvak,S.Powell,K.Christianson,C.Wallace,D.Speer,M.Lietz,P.Blanton,S.Vance,J.PericakVance,M.Henrich,V.C.ACommunity'sAwarenessandPerceptionsofGenomicMedicine.PublicHealthGenomics2010(2009December)13(2):6371
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Document101Etchegary,HollyCappelli,M.Potter,B.Vloet,M.Graham,I.Walker,M.Wilson,B.Attitudeandknowledgeaboutgeneticsandgenetictesting.PublicHealthGenomics2010(2009December)13(2):8088
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Document102Devettere,RaymondJ.MedicalgeneticsInhis:PracticalDecisionMakinginHealthCareEthics:CasesandConcepts.3rdedition.Washington,DC:GeorgetownUniversityPress,2010:420457Callnumber:R724.D482010
Document103Delfanti,AlessandroCastelfranchi,YurijPitrelli,Nico"WhatDr.Venterdidonhisholidays":exploration,hacking,entrepreneurshipinthenarrativesoftheSorcererIIexpeditionNewGeneticsandSociety2009December28(4):415430
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Document104Hui,E.Chow,K.Wu,D.Liu,A.Li,Y.OpinionsurveyoftheHongKonggeneralpublicregardinggenomicscienceandtechnologyandtheirethicalandsocialimplicationsNewGeneticsandSociety2009December28(4):381400
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Document105Borenstein,JasonThewisdomofcaution:geneticenhancementandfuturechildren.ScienceandEngineeringEthics2009December15(4):517530
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Document106vandenBelt,HenkPlayingGodinFrankenstein'sfootsteps:syntheticbiologyandthemeaningoflife.Nanoethics2009December3(3):257268Abstract:Theemergentnewscienceofsyntheticbiologyischallengingentrencheddistinctionsbetween,amongstothers,lifeandnonlife,thenaturalandtheartificial,theevolvedandthedesigned,andeventhematerialandtheinformational.Wheneversuchculturallysanctionedboundariesarebreached,researchersareinevitablyaccusedofplayingGodortreadinginFrankenstein'sfootsteps.Bioethicists,theologiansandeditorsofscientificjournalsfeel
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obligedtoprovideanauthoritativeanswertotheambiguousquestionofthe'meaning'oflife,bothasascientificdefinitionandasanexplicationwithwiderexistentialconnotations.Thisarticleanalysestheargumentsmootedintheemergingsocietaldebatesonsyntheticbiologyandthewayitspractitionersrespondtocriticism,mostlybyassumingadefiantpostureorprofessinghumility.Itexplorestherelationshipbetweenthe'playingGod'themeandtheFrankensteinmotifandexaminesthedoctrinalstatusofthe'playingGod'argument.Oneparticularlyinterestingfindingisthatliberaltheologiansgenerallydenythereligiouscharacterofthe'playingGod'argumentaresponsewhichfitsinwiththecuriousfactthatthisargumentisusedmainlybysecularorganizations.Syntheticbiology,itisthereforemaintained,doesnotoffendsomuchtheGodoftheBibleasadeifiedNature.Whilesynthesesofartificiallifeformscausesomevagueuneasinessthatlifemayloseitsspecialmeaning,mostconcernsturnouttobenarrowlyanthropocentric.Aslongassyntheticbiologycreatesonlynewmicrobiallifeanddoesnotdirectlyaffecthumanlife,itwillinalllikelihoodbeconsideredacceptable.
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Document107Murphy,JuliScott,JoanKaufman,DavidGeller,GailLeRoy,LisaHudson,KathyPublicperspectivesoninformedconsentforbiobanking.AmericanJournalofPublicHealth2009December99(12):21282134Abstract:TheNationalInstitutesofHealthandotherfederalhealthagenciesareconsideringestablishinganationalbiobanktostudytherolesofgenesandenvironmentinhealth.Weassessedthepublic'sattitudestowardtheproposedbiobank,includingpreferencesforprovidinginformedconsent.Sixteenfocusgroupswereconducted,andthemesarisingfromthefocusgroupsweretestedinalarge,representativesurvey(n=4659)ofthegeneralpopulation.Ourresearchdemonstratesthatwhenconsideringparticipatinginagenomicbiobank,individualswantongoingchoicesandcontroloveraccesstotheirsamplesandinformation.
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Document108Klitzman,RobertAmImygenes?:questionsofidentityamongindividualsconfrontinggeneticdiseaseGeneticsinMedicine2009December11(12):880889Supportedby:NHGRIfundedpublicationGrant5R01HG00243101
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Document109Dalton,RexMexico'stransgenicmaizeunderfire.[news]Nature2009November26462(7272):404
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http://www.nature.com/nature/journal/v462/n7272/(linkmaybeoutdated)
Document110Mayor,SusanScientiststoconsultonanimalscontaininghumanmaterial[news]
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BritishMedicalJournal2009November14339(7730):11061107
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Document111Roehr,BobDoctorsexploreethicsandresearchpotentialofstoringbloodsamplesfromnewborns[news]BritishMedicalJournal2009October3339(7724):774775
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Document112Bathe,OliverF.McGuire,AmyL.TheethicaluseofexistingsamplesforgenomeresearchGeneticsinMedicine2009October11(10):712715
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Document113Eberl,JasonT.Ballard,RebeccaA.MetaphysicalandethicalperspectivesoncreatinganimalhumanchimerasJournalofMedicineandPhilosophy2009October34(5):470486Abstract:Thispaperaddressesseveralquestionsrelatedtothenature,production,anduseofanimalhuman(ah)chimeras.Attheheartoftheissueiswhethercertaintypesofahchimerasshouldbebroughtintoexistence,and,iftheyare,howweshouldtreatsuchcreatures.Inourcurrentresearchenvironment,werecognizeadichotomybetweenresearchinvolvingnonhumananimalsubjectsandresearchinvolvinghumansubjects,andtheclassificationofaresearchprotocolintooneofthesecategorieswilltriggerdifferentethicalstandardsastothemoralpermissibilityoftheresearchinquestion.Areahchimerasentitledtothemorerestrictiveandprotectiveethicalstandardsappliedtohumanresearchsubjects?WeelucidateanAristotelianThomisticmetaphysicalframeworkinwhichtoarguehowsuchchimerasoughttobedefinedontologically.Wethenexaminewhenthecreationof,andexperimentationupon,certaintypesofahchimerasmaybemorallypermissible.
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Document114Hawkins,NaomideVries,JantinaBoddington,PaulaKaye,JaneHeeney,CatherinePlanningfortranslationalresearchingenomicsGenomeMedicine(electronic)2009September291(9):87
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Document115
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Biobanksneedpharma[editorial]Nature2009September24461(7263):448
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Document116Callaway,EwenKnockoutthepaingenes[news]NewScientist2009September511203(2724):89
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Document117Painfreebutnotguiltfree[editorial]NewScientist2009September511203(2724):5
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Document118CheckHayden,ErikaKeepinggenesoutofterrorists'hands[news]Nature2009September3461(7260):22
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Document119Kaebnick,GregoryE.Syntheticbiology:engineeringlifeMedicalEthicsNewsletter[LaheyClinic]2009Fall16(3):67
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Document120Waldby,CatherineBiobankinginSingapore:postdevelopmentalstate,experimentalpopulationNewGeneticsandSociety2009September28(3):253265
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Document121
http://ethicslab.org/openurl/wc/0000327406/http://ethicslab.org/openurl/gt/0000327406/http://www.nature.com/nature/http://ethicslab.org/openurl/wc/0000327306/http://ethicslab.org/openurl/gt/0000327306/http://ethicslab.org/openurl/wc/0000327305/http://ethicslab.org/openurl/gt/0000327305/http://ethicslab.org/openurl/wc/0000327292/http://ethicslab.org/openurl/gt/0000327292/http://www.nature.com/nature/http://ethicslab.org/openurl/wc/0000327167/http://ethicslab.org/openurl/gt/0000327167/http://www.lahey.org/Ethics/http://ethicslab.org/openurl/wc/0000327146/http://ethicslab.org/openurl/gt/0000327146/
Simon,JrgenRobienski,JrgenFrameworkforsettingupandoperatingbiobanks.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):1746Abstract:Withregardtotheuseofbiomaterials,thereisagreatneedforclarificationofthelegalramifications.Andsinceprocuringandstoringbiomaterialsisbecominganincreasinglyimportantpointforansweringmoleculargeneticquestionswithinmedicalresearch,findingananswersoonfortherelatedlegalandorganisationalquestionsisextremelyimportant.Thisarticleexaminesthemodernusesofbiomaterials,suitabletypesoflegalentityforbiobanksaswellasquestionsrelatedtoownershipofsamples.
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Document122Simon,JrgenRobienski,JrgenProperty,personalityrightsanddataprotectionwithregardtobiobanksalayeredsystem.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):4756Abstract:Thepersonfromwhombodymaterialswerecollected,firstbecomestheirownerinanalogytosection953GermanCivilCode.Thisappliesalsoifthebodymaterialsweretakenwithintheframeworkofatreatmentcontractandremainthereafterthetreatment/diagnosishaveended.Onlyifanexplicitconsentofthepatientwasgiventotheeffectthatthebodymaterialsaretobeownedbytheclinic/doctor,onlythenisitpossibletotransferownership.Aconclusivetransferofownershipdoesnotoccur.Acompleteanonymisationmakesthebodymaterialsownerlesssinceanassignmenttoapersonisnotpossibleanylonger.Inthiscase,theformercarrierofthebodymaterialshasnofurtherchancetomakeclaimtoanyrights.Inthatcase,scienceandbiotechnologicalindustryarefreetoutilizethebodymaterials.Theformercarrierofthebodymaterialsmaymakeclaimstobenefitsharingonlyifinsteadofananonymisationonlyapseudonymisationtakesplace.However,itiscommonpracticethatthepaymentfordamagesaccordingtoexistingrightstobenefitsharingafterunlawfuluseisquitesmall.Onlyatrusteemodelcouldachievethatpropertyrightsbeobserved,thatpersonalorpersonalityrightsareprotectedinthebestpossiblemannerandthatproperbenefitsharingbedone.
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Document123Jansen,BrigitteBiobankingandgenetictesting:acomparisonbetweenEuropeancountriesandIndia.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):5768Abstract:Inthelastdecade,theparticipationofpatientsandpopulationsinlargecollectionsofhumanbiologicalsamplesandgeneticdata("biobanks")playedamoreandmoreimportantrole.Theresultsofresearcheshaveledtoalotofnewscientificfindings:RegardingthehighdegreeofethnicdiversitybetweenandwithinEuropeancountriesthemselvesandalsointheIndianUnioninthiscontext,thearisingquestionishowtheconsequencesofthisdiversityarerecognisedandhavebeentakenintoaccounttoprovidebetterhealthcareservices.Thereisalsoasocial,culturalandreligoussensitivitywhichneedtobeconsideredintheplanninganddeliveryoftheseservices.Atthesametime,itisalsonecessarytorecognisethedangerofmakingaprioriassumptionsbasedontheculturaltraditionsoftherespectiveresearchers.Inthiscontext,thelastfewyearsalsothepossiblebenefitofpharmacogenetishasbeendiscussedwithinthescientificcommunity,thoughlessinpublic.Itseemsquestionableinwhichwaypublicawareness,educationandunderstandingofgeneticsandgeneticsrelatedconceptsandtechnologieswereincreasingandhavebeentakenintoaccount.Opencommunicationanddebateaboutrealandperceivedbenefitsaswellasrisks,pairedwithevidenceofappropriatehandlingofdataandsamples,willbeessentialtoestablishareasonableleveloftrustwithinthecommunities.Thiswillbethebasiswhichallowsthescientificandmedicalcommunitytoconductreasearch,anditisalsocapableofimprovinghealthcareissues.ThefollowingpresentationwilldiscusstheethicandlegalframeworkinEuropeandIndiaanddoacomparisoninlightofthequestionsraisedabove.
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Document124Commin,VirginieLegalissuessurroundingFrenchresearchfocusedbiobanks.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):6986Abstract:TheFrenchlawdoesnotnamethemexpresslyunderthiswordneverthelessthelegislatorprovidedthemrecentlywitharelativelyinterconnectedlegalframework.Ononehand,thetechnicalspecificrulesrelatedtotheactivitiesofbiobanks(onwhichconditionsabiobankcanbeestablished,onwhichconditionssamplescanbegiventhereto).Ontheotherhand,thereisanapplicationtobiobanksofthebigprinciplesof"Frenchstyle"bioethics:'nonproperty'principle,informedconsentanddataconfidentialityprinciples.Weshallshowthatinsodoing,theFrenchlegislatorgraspedandansweredthemainpartofthequestionsraisedandsopavedthewayforasustainedacitivityofbiobanksinFrance.Inspiteofthisdenselegalframework,thelawhasnotanticipatedatpresentallthequestionsarisingfromthepracticeofbiobanks,notablytherightsofthedonorssuchasanongoingcontrolontheuseofbiologicalmaterialandassociateddatatheygaveforresearchpurposes,aswellasresearchers'righttoaccessbiobanksandcurrentissuesrelatedtoownership.WeshallthusdiscovertheFrenchlegalframeworkforbiobanksusedforresearchpurposes.Thenweshalltrytoclearissuesremainingunresolved.
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Document125Petrini,CarloAbibliographyconcerninginformedconsentandbiobanking:documentsfromnationalandinternationalbodies.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):97105Abstract:Thearticlecontainsalistofnationalandinternationaldocumentsaddressingtheethicalaspectsofbiobanking,whichweredraftedbynationalbioethicscommitteesnationaladhoccommissionsandnationalandinternationalagencies,organizations,andsocieties.Thegreaterpartofthedocumentsspecificallyfocusesonquestionsinvolvingtheethicsofinformedconsentforbiobanking.Thedocumentsaregroupedaccordingtothenatureofthepromulgatingbody,andarelistedalphabeticallywithineachgroupaccordingtothepromulgatingbody.SpecialattentionisdevotedtodocumentsissuedbytheEuropeanUnionandtheCouncilofEurope.
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Document126Hongladarom,SorajPrivacy,theindividualandgeneticinformation:aBuddhistperspective.Bioethics2009September23(7):403412Abstract:Bioinformaticsisanewfieldofstudywhoseethicalimplicationsinvolveacombinationofbioethics,computerethicsandinformationethics.ThispaperisanattempttoviewsomeoftheseimplicationsfromtheperspectiveofBuddhism.Privacyisacentralconcerninbothcomputer/informationethicsandbioethics,andwithinformationtechnologybeingincreasinglyutilizedtoprocessbiologicalandgeneticdata,theissuehasbecomeevenmorepronounced.Traditionally,privacypresupposestheindividualselfbutasBuddhismdoesawaywiththeultimateconceptionofanindividualself,ithastofindawaytoanalyseandjustifyprivacythatdoesnotpresupposesuchaself.Itdoesthisthroughapragmaticconceptionthatdoesnotdependonapositingofthesubstantialself,whichisthenfoundtobeunnecessaryforaneffectiveprotectionofprivacy.Asitmaybepossibleonedaytolinkgeneticdatatoindividuals,theBuddhistconceptionperhapsoffersamoreflexibleapproach,aswhatisconsideredtobeintegraltoanindividualpersonisnotfixedinobjectivitybutdependsonconvention.
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http://www3.interscience.wiley.com/journal/122527835/issue(linkmaybeoutdated)
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Document127Maschke,KarenJ.ImplicationsHastingsCenterReport2009SeptemberOctober39(5):insidefrontcover
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Document128Kaiser,JocelynCashstarveddeCODEislookingforarescuerforitsbiobank[news]Science2009August28325(5944):1054
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http://www.sciencemag.org/content/vol325/issue5944/(linkmaybeoutdated)
Document129Theethicsofeggmanipulation[editorial]Nature2009August27460(7259):1057
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Document130Pennisi,ElizabethTwostepsforwardforsyntheticbiology[news]Science2009August21325(5943):928929
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Document131Pollack,AndrewScientistsshowthatit'spossibletocreatefakeDNAevidence[news]NewYorkTimes2009August18p.D3
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Document132IslamicOrganizationforMedicalSciences[IOMS]Genetics,geneticengineering,thehumangenes,andgenetictreatmentanIslamicperspectiveIslamicOrganizationforMedicalSciencesNewsletter2009August12(2):6p.[Online].Accessed:http://www.islamset.com/newsletter/secondissue/main_topic/Recommendations.html[2011July5]
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Document133Verhoeff,R.P.Moors,E.H.M.Osseweijer,P.Interactivecommunicationinpharmacogenomicsinnovations:userproducerinteractionfromaninnovationandsciencecommunicationperspectiveGenomics,Society,andPolicy[electronic]2008August4(2):5369Abstract:Pharmacogenomicsisaquicklyevolvingfieldofresearchthatincreasinglyimpactsindividualsandsociety.Assomeinnovationsinbiotechnologyhaveexperiencedstrongpublicoppositionduringthe1990s,interactionbetweenproducersandusersoftheseinnovationsmayhelpinincreasingtheirsuccessinsocialandeconomicterms.However,conditionsforeffectiveinteractionhavesofarremainedunderexplored.ThispaperexploresuserproducerinteractionsinpharmacogenomicsfromaninnovationandsciencecommunicationperspectiveintheNetherlands.Tofindpossiblewaysofengagingstakeholdersinanearlystageoftechnologydevelopment,ie,whensciencepolicyisinthemaking,wepresentcommunicationactivitiesderivedfromthefieldofpolicyanalysis.Toarticulatemotivesfortwowaypublicparticipationingenomicsinnovationprocesses,wedescribetwolevelsatwhichpharmacogenomicsdevelopmentswillhaveaninput:1)atthemesolevelofmedicalpracticewithalreadyestablishedmedicaltechnologies,valuesandroutines,suppliersandhealthprofessionals(generalpractitioners,pharmacists),and2)atthemacrolevelofsocietyatlarge,withestablishedinstitutions,infrastructures,andbroadlysharedvaluesandbeliefsamongcitizensingeneral.Therebyweofferastartingpointforoptimisingdecisionmakingprocessesinthefieldofpharmacogenomicsinnovations,includingimportantaimstobereached,stakeholderstobeinvolved,andsomecriteriafordesigninginteractivecommunicationactivities.
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Document134Schermer,MaartjeGenomics,obesityandenhancement:moralissuesregardingaestheticsandhealthGenomics,Society,andPolicy[electronic]2008August4(2):3652Abstract:Humanenhancementisthetermusedforapplicationsofbiomedicalknowledgethataimtoimprovehumanformorfunctioningbeyondwhatisnecessarytorestoreorsustaingoodhealth.Genomicsisoneoftheresearchareasthatpromisestooffersuchpossibilitiesinthenearfuture,andbodyweightespeciallyoverweightandobesityisoneofthehumancharacteristicsatwhichthesewillbedirected.Thispaperoffersanoverviewofsomeofthemoralissuesthatthesubjectofenhancementraiseswhenrelatedtoobesityandgenomics.Afterabriefdiscussionofthedifferentperspectivesonobesityandonthemeaningofthetermenhancement,aframeworkispresentedinwhichthemoralissuesatstakeareorganisedaccordingtoperspectiveonobesity(healthoraesthetics)andmoraloutlook(distributivejusticevsprivatemorality).Aninventoryismadeofthedifferentethicaldiscussionsthatpossiblefuturegenomicsbasedoptionsforthepreventionortreatmentofobesityandoverweightmayevoke.Theseincludejustice,obligationswithregardtolifestyle,thelimitsofmedicalpracticeandthevalueoffoodandfoodcultures.Finally,somespeculationsaremadewithregardtofuturepossibilitiesforgeneticmodificationandselfevolution.
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Document135Birch,KeanNeoliberalisingbioethics:bias,enhancement,andeconomisticethicsGenomics,Society,andPolicy[electronic]2008August4(2):110
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Abstract:Inbioethicsthereisanongoingdebateabouttheethicalcaseforhumanenhancementthroughnewbiomedicaltechnologies.Inthisdebatetherearebothsupportersandopponentsofhumanenhancementtechnologiessuchasgeneticimprovementsofcognitiveabilities(eg,intelligence).Thesupportersarguethathumanenhancementwillleadtohealthierandthereforebetterlives,meaningthatanydelaystotheintroductionofsuchtechnologiesisproblematic.Incontrast,theopponentsarguethatnewtechnologieswillnotsolveproblemssuchasinequalityandsocialjustice.Inordertoovercomeoppositiontohumanenhancement,BostromandOrdhaveoutlinedatesttoevaluateethicalargumentsforstatusquobiasorwhattheycallintuitivejudgementsintheassessmentofhumanenhancement.ThisarticleisaresponsetotheirpaperinwhichIraiseanumberofproblemswiththeirposition,particularlywiththeirstatusquobiastestandtheincorporationofeconomisticthinkingintotheirethicalarguments.
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Document136McWhorter,LadelleGovernmentality,biopower,andthedebateovergeneticenhancementJournalofMedicineandPhilosophy2009August34(4):409437Abstract:AlthoughFoucaultadamantlyrefusedtomakemoralpronouncementsordictatemoralprinciplesorpoliticalprogramstohisreaders,hisworkoffersanumberoftoolsandconceptsthatcanhelpusdevelopourownethicalviewsandpractices.Oneofthesetoolsisgenealogicalanalysis,andoneoftheseconceptsis"biopower."Specifically,thisessayseekstodemonstratethatFoucault'sconceptofbiopowerandhisgenealogicalmethodarevaluableasweconsidermoralquestionsraisedbygeneticenhancementtechnologies.First,itexaminescontemporarydebateoverthedevelopment,marketing,andapplicationofsuchtechnologies,suggestingthatwhatpassesforethicaldeliberationisoftenlittlemorethanpoliticalmaneuveringinafieldwherestakesareveryhighandpublicperceptionswillplayacrucialroleindecisionsaboutwhichtechnologieswillbefundedordisallowed.Itgoesontoarguethatgenuineethicaldeliberationontheseissuesrequiressomeseriousinvestigationoftheirhistoricalcontext.Accordingly,then,ittakesuptheoftheardchargefromcriticsthatgeneticenhancementtechnologiesarecontinuouswithtwentiethcenturyeugenicprojectsorwillusherinanewageofeugenics.Foucaultexplicitlylinkstwentiethcenturyeugenicswiththeriseofbiopower.Throughreviewofsomeaspectsofthetwentiethcenturyeugenicsmovementalongsidesomeoftherhetoricandclaimsofenhancement'smoderndayproponents,theessayshowswaysinwhichdeploymentofgeneticenhancementtechnologiesisandisnotcontinuouswithearlierdeploymentsofbiopower.
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Document137AlUbaydil,MohammadNavarro,RobGenomicelectronichealthrecords:opportunitiesandchallengesGenomeMedicine(electronic)2009July221(7):73
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Document138Risher,MichaelT.RacialdisparitiesindatabankingofDNAprofilesGeneWatch2009JulyAugust22(34):2224,35
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Document139Kahn,JonathanBiDilandracializedmedicineGeneWatch2009JulyAugust22(34):1819,31,34
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Document140DrabiakSyed,KatherineStatecodificationoffederalregulatoryambiguitiesinbiobankingandgeneticresearch.JournalofLegalMedicine2009JulySeptember30(3):299327
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Document141SchulteindenBaumen,TobiasPaci,DanieleIbarreta,DoloresDataprotectioninbiobanksaEuropeanchallengeforthelongtermsustainabilityofbiobanking.RevistadeDerechoyGenomaHumano=LawandtheHumanGenomeReview2009JulyDecember(31):1325
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Document142Sorensen,KellyGeneticenhancementsandexpectationsJournalofMedicalEthics2009July35(7):433435Abstract:Somearguethatgeneticenhancementsandenvironmentalenhancementsarenotimportantlydifferent:environmentalenhancementssuchasprivateschoolsandchesslessonsaresimplytheoldschoolwaytohaveadesignerbaby.Iarguethatthereisanimportantdistinctionbetweenthetwopracticesadistinctionthatmakesstaterestrictionsongeneticenhancementsmorejustifiablethanstaterestrictionsonenvironmentalenhancements.Thedifferenceisthatparentshavenosettledexpectationsaboutgeneticenhancements.
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Document143Lane,EarlHam,BeckyPersonalizedmedicine:successestemperedbysignificantchallenges[news]Science2009June26324(5935):1658
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Document144Toccaceli,VirgiliaFagnani,CorradoNistic,LorenzaD'Ippolito,CristinaGiannantonio,LorenzoBrescianini,SoniaStazi,MariaAntoniettaResearchunderstanding,attitudeandawarenesstowardsbiobanking:asurveyamongItaliantwinparticipantstoageneticepidemiologicalstudy.BMCMedicalEthics[electronic]2009June1610:4Abstract:BACKGROUND:TheItalianTwinRegistry(ITR)hasbeencarryingoutseveralgeneticepidemiologicalstudies.Collectionandstorageofbiologicalmaterialfromstudyparticipantshasrecentlyincreasedinthelightofbiobankingdevelopment.Withinthisscenario,weaimedatinvestigatingunderstanding,awarenessandattitudetowardsblood/DNAdonationofresearchparticipants.Aboutthesequiteunknowndimensionsmoreknowledgeisneededfromethicalandsocialperspectives.METHODS:Crosssectionalmailsurveytoexplorethreedimensions:(i)understandingofaimsandmethodofaspecificstudy,(ii)attitude(threeideasfordonation:"moralduty","pragmatism","spontaneity")and(iii)awareness(i.e.therecallofhavingbeenaskedtodonate)towardsblood/DNAdonationforresearch,amongalltheItaliantwinswhohadparticipatedinEuroclot(n=181),alargeinternationalgeneticepidemiologicalstudy.Multivariatemodelswereappliedtoinvestigatetheassociationofsex,age,educationandmodalityofEuroclotrecruitment(twinsenrolledintheITRandvolunteers)withthetargeteddimensions.Pairwisetwinconcordanceforthe"pragmatic"attitudewasestimatedinmonozygoticanddizygoticpairs.RESULTS:Responseratewas56%(99subjects)75.8%understoodtheEuroclotmethod,only33.3%correctlyansweredaboutthestudyaim.Asignificantlybetterunderstandingofaimandmethodwasdetectedin"volunteers".Graduatedsubjectsweremorelikelytounderstandstudyaim.Intheoverallsample,the"pragmatic"attitudetoblooddonationreached76.8%,andbiobankingawareness89.9%.Thelatterwassignificantlyhigheramongwomen.Monozygotictwinsweremoreconcordantthandizygotictwinsforthe"pragmatic"attitudetowardsblood/DNAdonationforresearch.CONCLUSION:Levelofunderstandingofaimsandmethodsofaspecificresearchprojectseemstovaryinrelationtomodalitiesofapproachingresearchmostofthetwinsarewellawareofhavingbeenaskedtodonatebloodforbiobankingactivities,andseemtobemotivatedbya"pragmatic"attitudetoblood/DNAdonation.Geneticinfluencesonthisattitudeweresuggested.Theframingofinterestsandconcernsofhealthyparticipantstogeneticepidemiologicalstudiesshouldbefurtherpursued,sinceresearch,particularlyfor"commondiseases",isincreasinglyrelyingonpopulationsurveysandbiobanking.
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Document145Todorova,BogdanaKolev,VasilMoralimperativeintheageofgeneticmedicineFormosanJournalofMedicalHumanities2009June10(12):105116
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Document146Todorova,BogdanaKolev,VasilMoralimperativeintheageofgeneticmedicineFormosanJournalofMedicalHumanities2009June10(12):105116
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http://ethicslab.org/openurl/wc/0000326032/http://ethicslab.org/openurl/gt/0000326032/http://www.biomedcentral.com/1472-6939/10/4http://ethicslab.org/openurl/wc/0000325903/http://ethicslab.org/openurl/gt/0000325903/http://www.csmu.edu.tw/genedu/public_html/journal.htmhttp://ethicslab.org/openurl/wc/0000325894/http://ethicslab.org/openurl/gt/0000325894/http://www.csmu.edu.tw/genedu/public_html/journal.htm
Document147Widdows,HeatherBetweentheindividualandthecommunity:theimpactofgeneticsonethicalmodelsNewGeneticsandSociety2009June28(2):173188
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Document148Shineha,RyumaKato,KazutoPublicengagementinJapanesepolicymaking:ahistoryofthegeneticallymodifiedorganismsdebateNewGeneticsandSociety2009June28(2):139152
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Document149Harvey,AlisonFromgeneticrisktopostgenomicuncertainties:nutrigenomicsandthebirthofthe"geneticentrepreneur"NewGeneticsandSociety2009June28(2):119137
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Document150Silva,SusanaMachado,HelenaTrust,moralityandaltruisminthedonationofbiologicalmaterial:thecaseofPortugalNewGeneticsandSociety2009June28(2):103118
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Document151Kayser,ManfredSchneider,PeterM.DNAbasedpredictionofhumanexternallyvisiblecharacteristicsinforensics:motivations,scientificchallenges,andethicalconsiderations.ForensicScienceInternational.Genetics2009June3(3):154161
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Document152Knoppers,BarthaMariaKnoppersReturnof"Accurate"and"Actionable"Results:Yes!AmericanJournalofBioethics2009JuneJuly9(67):107109
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http://dx.doi.org/10.1080/15265160902918788(linkmaybeoutdated)
http://ethicslab.org/openurl/wc/0000325885/http://ethicslab.org/openurl/gt/0000325885/http://ethicslab.org/openurl/wc/0000325882/http://ethicslab.org/openurl/gt/0000325882/http://ethicslab.org/openurl/wc/0000325881/http://ethicslab.org/openurl/gt/0000325881/http://ethicslab.org/openurl/wc/0000325880/http://ethicslab.org/openurl/gt/0000325880/http://ethicslab.org/openurl/wc/0000325779/http://ethicslab.org/openurl/gt/0000325779/http://ethicslab.org/openurl/wc/0000325723/http://ethicslab.org/openurl/gt/0000325723/http://dx.doi.org/10.1080/15265160902918788
Document153Hsu,AndroR.Avey,LindaMountain,JoannaL.Wojcicki,AnneAPragmaticConsiderationofEthicalIssuesRelatingtoPersonalGenomics[editorial]AmericanJournalofBioethics2009JuneJuly9(67):12
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Document154Capron,AlexanderMorganMauron,AlexandreElger,BerniceSimoneBoggio,AndreaGanguliMitra,AgomoniBillerAndorno,NikolaEthicalnormsandtheinternationalgovernanceofgeneticdatabasesandbiobanks:findingsfromaninternationalstudyKennedyInstituteofEthicsJournal2009June19(2):101124Abstract:Thisarticlehighlightsmajorresultsofastudyintotheethicalnormsandrulesgoverningbiobanks.Afterdescribingthemethodology,thefindingsregardingfourtopicsarepresented:(1)theownershipofhumanbiologicalsamplesheldinbiobanks(2)theregulationofresearchers'useofsamplesobtainedfrombiobanks(3)whatconstitutes"collectiveconsent"togeneticresearch,andwhenitisneededand(4)benefitsharingandremunerationofresearchparticipants.Thepaperthensummarizeskeylessonstobedrawnfromthefindingsandconcludesbyreflectingontheimportanceofsuchempiricalresearchtoinformfuturegovernancenormsandpractices.
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Document155Feiring,EliReassessinginsurers'accesstogeneticinformation:geneticprivacy,ignorance,andinjustice.Bioethics2009June23(5):300310Abstract:Manycountrieshaveimposedstrictregulationsonthegeneticinformationtowhichinsurershaveaccess.Commentatorshavewarnedagainsttheemergingbodyoflegislationfordifferentreasons.Thispaperdemonstratesthat,whenconfrontedwiththeargumentthatgeneticinformationshouldbeavailabletoinsurersforhealthinsuranceunderwritingpurposes,oneshouldavoidappealstorightsofgeneticprivacyandgeneticignorance.Theprincipleofequalityofopportunitymayneverthelesswarrantrestrictions.Achoicebasedaccountofthisprincipleimpliesthatitisunfairtoholdpeopleresponsiblefortheconsequencesofthegeneticlottery,sincewehavenochoiceinselectingourgenotypeortheexpressionofit.Howeverappealing,thisviewdoesnottakeusallthewaytoanadequatejustificationofinaccessibilityofgeneticinformation.Acontractarianaccount,suggestingthathealthisaconditionofopportunityandthathealthcareisanessentialgood,seemsmorepromising.Iconcludethatiforwhenpredictivemedicaltests(suchasgenetictests)aredevelopedwithsignificantactuarialvalue,individualshavelessreasontoacceptasfairinstitutionsthatlimitaccesstohealthcareonthegroundsofriskstatus.Giventheassumptionthatadivisionofriskpoolsinaccordancewitharoughestimateofpeople'slevelof(genetic)riskwilloccur,fairnessandjusticefavouruniversalhealthinsurancebasedonsolidarity.
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Document156Timetoconnect[editorial]Nature2009May28459(7246):483
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http://www.nature.com/nature/(linkmaybeoutdated)
http://ethicslab.org/openurl/wc/0000325684/http://ethicslab.org/openurl/gt/0000325684/http://dx.doi.org/10.1080/15265160902966795http://ethicslab.org/openurl/wc/0000325640/http://ethicslab.org/openurl/gt/0000325640/http://ethicslab.org/openurl/wc/0000325628/http://ethicslab.org/openurl/gt/0000325628/http://ethicslab.org/openurl/wc/0000325584/http://ethicslab.org/openurl/gt/0000325584/http://www.nature.com/nature/
Document157Cyranoski,DavidMarmosetmodeltakescentrestage[news]Nature2009May28459(7246):492
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Document158Schatten,GeraldMitalipov,ShoukhratTransgenicprimateoffspring[news]Nature2009May28459(7246):515516
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Document159Germany'sDNAlaw[newsbrief]NewScientist2009May2329202(2709):5
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Document160Marshall,EliotLawsuitchallengeslegalbasisforpatentinghumangenes[news]Science2009May22324(5930):10001001
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Document161Colorado:DNAlawissignedNewYorkTimes2009May22p.A18
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Document162Moore,SolomonInalab,anevergrowingdatabaseofDNAprofilesNewYorkTimes2009May12p.D3
http://ethicslab.org/openurl/wc/0000325583/http://ethicslab.org/openurl/gt/0000325583/http://www.nature.com/nature/http://ethicslab.org/openurl/wc/0000325582/http://ethicslab.org/openurl/gt/0000325582/http://www.nature.com/nature/http://ethicslab.org/openurl/wc/0000325544/http://ethicslab.org/openurl/gt/0000325544/http://ethicslab.org/openurl/wc/0000325539/http://ethicslab.org/openurl/gt/0000325539/http://www.sciencemag.org/archive/http://ethicslab.org/openurl/wc/0000325537/http://www.nytimes.com/http://ethicslab.org/openurl/wc/0000325483/
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Document163Kaye,JaneHeeney,CatherineHawkins,NaomideVries,JantinaBoddington,PaulaDatasharingingenomicsreshapingscientificpractice.NatureReviews.Genetics2009May10(5):331335
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Document164Knoppers,BarthaMariaGenomicsandpolicymaking:fromstaticmodelstocomplexsystems?HumanGenetics2009May125(4):375379
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Document165Geneticprivacyandpiracy.NatureCellBiology2009May11(5):509
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Document166Vermeulen,EricSchmidt,MarjankaK.Aaronson,NeilK.Kuenen,MariannevanLeeuwen,FloraE.Obtaining'fresh'consentforgeneticresearchwithbiologicalsamplesarchived10yearsago.EuropeanJournalofCancer2009May45(7):11681174
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http://www.sciencedirect.com/science/journal/09598049(linkmaybeoutdated)
Document167Edgar,AndrewThehermeneuticchallengeofgeneticengineering:HabermasandthetranshumanistsMedicine,HealthCare,andPhilosophy2009May12(2):157167Abstract:Thepurposeofthispaperistoexploretheimpactthatdevelopmentsintranshumanisttechnologiesmayhaveuponhumancultures(andthusuponthelifeworld),andtodosobyexploringapotentialdebatebetweenHabermasandthetranshumanists.Transhumanists,suchasNickBostrom,typicallyseethepotentialingeneticandothertechnologiesforpositivelyexpandingandtranscendinghumannature.Incontrast,Habermasisarepresentativeofthosewhoarefearfulofthistechnology,suggestingthatitwillcompoundthedeleteriouseffectsofthecolonisationofthelifeworld,furtherconstraininghumanautonomyandunderminingthemeaningfulnessofthelifeworldbyexpandingthetechnologicalcontrolandmanipulationofhumanity.Itwillbearguedthattheseopposedpositionsaregroundedinfundamentallydifferentunderstandingsoftheconsequencesofscientificandtechnologicaladvance.Ononelevel,thetranshumanistsremainconfidentthatthelifeworldhaswithinittheresourcesnecessary
http://www.nytimes.com/http://ethicslab.org/openurl/wc/0000325331/http://ethicslab.org/openurl/gt/0000325331/http://www.nature.com/nrghttp://ethicslab.org/openurl/wc/0000325309/http://ethicslab.org/openurl/gt/0000325309/http://kie.georgetown.edu/netacgi/www.springerlink.comhttp://ethicslab.org/openurl/wc/0000325282/http://ethicslab.org/openurl/gt/0000325282/http://ethicslab.org/openurl/wc/0000325281/http://ethicslab.org/openurl/gt/0000325281/http://www.sciencedirect.com/science/journal/09598049
tofindmeaningandpurposeinasocietydeeplyinfusedbygenetictechnology.Habermasdisagrees.Onanotherlevel,thedifferenceisarticulatedbyHorkheimerandAdornoinDialecticofEnlightenment,primarilybychallengingwhatmaybeunderstoodasaBaconianfaithinscienceasaprojectforthedominationofnature(wherenatureisaninfinitelymalleablematerial,tobedominatedandshaped,withoutadverseconsequences,purelyforthepurposesofhumansurvival).Whilethetranshumanistsbroadlyembracethisfaith,HabermasreturnstosomethingakintoHorkheimerandAdorno'spessimisticscepticism.
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Document168Christiansen,KarinThesilencingofKierkegaardinHabermas'critiqueofgeneticenhancementMedicine,HealthCare,andPhilosophy2009May12(2):147156Abstract:ThemainpurposeofthispaperistodrawattentiontoanimportantpartofHabermas'critiqueofgeneticenhancement,whichhasbeenlargelyignoredinthediscussionnamelyhisuseofKierkegaard'sreflectionsontheexistentialconditionsforbecomingoneselffromEither/orandtheSicknessuntoDeath.Itwillbearguedthat,althoughHabermaspresentssomevaluableandhighlysignificantperspectivesontheeffectofgeneticenhancementontheindividual'sselfunderstandingandabilitytoexperiencehimorherselfasafreeandequalindividual,hedoesnotsucceedinworkingoutaconsistentargument.Theclaimisthathefailstoexplainhowtheexistentialanalysisisrelatedtohisreflectionsonthesociologicalandpsychologicalimpactsofgeneticenhancementintherealmofcommunicativeaction.Itisthislackoftheoreticalclarity,whichseemstorenderHabermasvulnerabletosomeofthecritiquewhichhasbeenraisedagainsthistheoryfromanumberofdifferentscientificdisciplinesandareasofresearch.Hence,thefirstpartofthepaperprovidessomeexamplesofthenatureandvarietyofthiscritique,thesecondpartpresentsHabermas'owncritiqueofgeneticenhancementinthecontextofadisputebetweensocalled'liberal'and'conservative'arguments,andfinally,thethirdpartdiscussesthelimitsandpossibilitiesofhispositioninafuturedebateaboutgeneticenhancement.
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Document169Zwart,HubGenomicsandidentity:thebioinformatisationofhumanlifeMedicine,HealthCare,andPhilosophy2009May12(2):125136Abstract:Thegenomics"revolution"isspreading.Originatinginthemolecularlifesciences,itinitiallyaffectedanumberofbiomedicalresearchfieldssuchascancergenomicsandclinicalgenetics.Now,however,anew"wave"ofgenomicbioinformationistransformingawideningarrayofdisciplines,includingthosethataddressthesocial,historicalandculturaldimensionsofhumanlife.Increasingly,bioinformationisaffecting"humansciences"suchaspsychiatry,psychology,brainresearch,behaviouralresearch("behaviouralgenomics"),butalsoanthropologyandarchaeology("bioarchaeology").Thus,bioinformaticsishavinganimpactonhowwedefineandunderstandourselves,howidentitiesareformedandconstituted,and,finally,onhowwe(onthebasisoftheseredefinedidentities)assessandaddresssomeofthemoreconcretesocietalissuesinvolvedingenomicsgovernanceinvarioussettings.Thisarticleexploreshowgenomicsandbioinformation,byinfluencingresearchagendasinthehumansciencesandthehumanities,areaffectingourselfimage,ouridentity,thewayweseeourselves.Theimpactofbioinformationonselfunderstandingwillbeassessedonthreelevels:(1)thecollectivelevel(theimpactofcomparativegenomicsonourunderstandingofhumanbeingsasaspecies),(2)theindividuallevel(theimpactofbehaviouralgenomicsonourunderstandingofourselvesasindividuals),and(3)thegenealogicallevel(theimpactofpopulationgenomicsonourunderstandingofhumanhistory,notablyearlyhumanhistory).Thisthreefoldimpactwillbeassessedfromtwoseeminglyin