ethxweb search results - home | bioethics … basmah al wirathiyah wa atharuha fi ithbat al nasab wa...

EthxWebSearchResults

SearchDetail:Result=((("15.1"[PC])AND((AVORB).PT.))AND(@YD>"20001231"))OR(((("15.1"[PC])AND(Y.BL.))NOT(LETTER.TI.))AND(@YD>"20001231"))2=1:"Documents:1325of2676

* 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

GeorgetownuserscheckGeorgetownJournalFinderforaccesstofulltext

* Document4Lone,FrankMYBEAUTIFULGENOME:EXPOSINGOURGENETICFUTURE,ONEQUIRKATATIMEOxford:Oneworld,2011.313p.Callnumber:QH447.F73132011

Document5Tramper,JohannesandZhu,YangMODERNBIOTECHNOLOGY:PANACEAORNEWPANDORA'SBOX?Wageningen:WageningenAcademicPublishers,2011.284p.

* Document6Montoya,MichaelJ.

http://bioethics.georgetown.edu/databases/http://www11.georgetown.edu/research/nrcbl/databases/GenETHX/genebool.htmhttp://kie.georgetown.edu/netacgi/nph-brs?co1=AND&co2=AND&co3=AND&co4=AND&d=EWEB&Sect2=THESON&u=http%3A%2F%2Fwww11.georgetown.edu%2Fresearch%2Fnrcbl%2Fdatabases%2FGenETHX%2Fgenebool.htm&r=0&p=2&f=S&l=50&s4=((((AV+OR+B).PT.)+AND+(%2215.1%22%5BPC%5D))+AND+(%40YD+%3E++%2220001231%22))+OR+((((%2215.1%22%5BPC%5D)+AND+(Y.BL.))+NOT+(LETTER.TI.))+AND+(%40YD+%3E++%2220001231%22))&s2=&co5=AND&pg1=SUBJ&op1=AND&s1=&co6=AND&op6=AND&s6=&Sect3=PLURON&Sect5=HITOFF&l=0http://kie.georgetown.edu/netacgi/nph-brs?co1=AND&co2=AND&co3=AND&co4=AND&d=EWEB&Sect2=THESON&u=http%3A%2F%2Fwww11.georgetown.edu%2Fresearch%2Fnrcbl%2Fdatabases%2FGenETHX%2Fgenebool.htm&r=0&p=1&f=1&l=50&s4=((((AV+OR+B).PT.)+AND+(%2215.1%22%5BPC%5D))+AND+(%40YD+%3E++%2220001231%22))+OR+((((%2215.1%22%5BPC%5D)+AND+(Y.BL.))+NOT+(LETTER.TI.))+AND+(%40YD+%3E++%2220001231%22))&s2=&co5=AND&pg1=SUBJ&op1=AND&s1=&co6=AND&op6=AND&s6=&Sect3=PLURON&Sect5=HITOFF&l=0http://catalog.library.georgetown.edu/search/c?SEARCH=TP248.23%20.L58%202012&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000341216/http://catalog.library.georgetown.edu/search/c?SEARCH=QH31%20.L95%20S73%202012&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000341192/http://ethicslab.org/openurl/wc/0000337912/http://ethicslab.org/openurl/gt/0000337912/http://catalog.library.georgetown.edu/search/c?SEARCH=QH447%20.F7313%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336681/http://ethicslab.org/openurl/wc/0000336648/

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.

http://catalog.library.georgetown.edu/search/c?SEARCH=RA645%20.D5%20M66%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336645/http://catalog.library.georgetown.edu/search/c?SEARCH=RC628%20.G46%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336627/http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.A26%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336590/http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.R438%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336570/http://ethicslab.org/openurl/wc/0000336559/http://catalog.library.georgetown.edu/search/c?SEARCH=QH332%20.I337%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336553/http://catalog.library.georgetown.edu/search/c?SEARCH=BL255%20.R37%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336517/

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


http://www.nature.com/nature/archive/(linkmaybeoutdated)

Document17Mader,MaryBethFoucault's`Metabody'JournalofBioethicalInquiry2010June7(2):187203


http://www.springer.com/medicine/journal/11673(linkmaybeoutdated)

Document18Evans,JamesP.Burke,WylieKhoury,MuinTherulesremainthesameforgenomicmedicine:thecaseagainst"reversegeneticexceptionalism".GeneticsinMedicine2010June12(6):342343


Document19Deamer,DavidLifeafterthesyntheticcell:originoflifejustgotcloserNature2010May27465(7297):424

http://catalog.library.georgetown.edu/search/c?SEARCH=TP248.23%20.B43%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336507/http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.G4615%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336503/http://catalog.library.georgetown.edu/search/c?SEARCH=RB155%20.P566%202011&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000336502/http://ethicslab.org/openurl/wc/0000333024/http://ethicslab.org/openurl/gt/0000333024/http://www.nature.com/nature/archive/http://ethicslab.org/openurl/wc/0000332506/http://ethicslab.org/openurl/gt/0000332506/http://www.springer.com/medicine/journal/11673http://ethicslab.org/openurl/wc/0000332499/http://ethicslab.org/openurl/gt/0000332499/


http://www.nature.com/nature/journal/v465/n7297/(linkmaybeoutdated)

Document20Collins,JimLifeafterthesyntheticcell:gotparts,needmanualNature2010May27465(7297):424



Document21Fussenegger,MartinLifeafterthesyntheticcell:nature'slimitsstillapplyNature2010May27465(7297):424



Document22Benner,StevenLifeafterthesyntheticcell:synthesisdrivesinnovationNature2010May27465(7297):423



Document23Caplan,ArthurLifeafterthesyntheticcell:theendofvitalismNature2010May27465(7297):423



Document24Rasmussen,SteenLifeafterthesyntheticcell:bottomup'willbemoretellingNature2010May27465(7297):422423


http://ethicslab.org/openurl/wc/0000332445/http://ethicslab.org/openurl/gt/0000332445/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332444/http://ethicslab.org/openurl/gt/0000332444/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332443/http://ethicslab.org/openurl/gt/0000332443/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332442/http://ethicslab.org/openurl/gt/0000332442/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332441/http://ethicslab.org/openurl/gt/0000332441/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332440/http://ethicslab.org/openurl/gt/0000332440/


Document25Church,GeorgeLifeafterthesyntheticcell:nowlet'slowercostsNature2010May27465(7297):422



Document26Bedau,MarkLifeafterthesyntheticcell:thepowerandthepitfallsNature2010May27465(7297):422



Document27Challengesofourownmaking:Thesuccessfultransplantationofasynthesizedgenomehighlightsunresolvedethicalandsecurityissuesposedbysyntheticbiology.[editorial]Nature2010May27465(7297):397



Document28Katsnelson,AllaSyntheticgenomeresetsbiotechgoals.[news]Nature2010May27465(7297):406



Document29Pennisi,ElizabethGenomics.Syntheticgenomebringsnewlifetobacterium.[news]Science2010May21328(5981):958959


http://www.sciencemag.org/content/vol328/issue5981/(linkmaybeoutdated)

http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332439/http://ethicslab.org/openurl/gt/0000332439/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332438/http://ethicslab.org/openurl/gt/0000332438/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332437/http://ethicslab.org/openurl/gt/0000332437/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332436/http://ethicslab.org/openurl/gt/0000332436/http://www.nature.com/nature/journal/v465/n7297/http://ethicslab.org/openurl/wc/0000332418/http://ethicslab.org/openurl/gt/0000332418/http://www.sciencemag.org/content/vol328/issue5981/

Document30Callaway,EwenDNAdilemma:settlementhighlightswiderissuesposedbygeneresearch[news]NewScientist2010May1206(2758):10


http://www.newscientist.com/article/dn18832nativeamericansettlementhighlightsdnadilemma.html(linkmaybeoutdated)

Document31Yamaguchi,TomikoSuda,FumiakiChangingsocialorderandthequestforjustification:GMOcontroversiesinJapanScience,Technology,andHumanValues2010May35(3):382407


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.


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.

http://ethicslab.org/openurl/wc/0000332354/http://ethicslab.org/openurl/gt/0000332354/http://www.newscientist.com/article/dn18832-native-american-settlement-highlights-dna-dilemma.htmlhttp://ethicslab.org/openurl/wc/0000332025/http://ethicslab.org/openurl/gt/0000332025/http://ethicslab.org/openurl/wc/0000332024/http://ethicslab.org/openurl/gt/0000332024/http://ethicslab.org/openurl/wc/0000331966/


http://www.springerlink.com/content/102960/(linkmaybeoutdated)

Document34CouzinFrankel,JenniferDNAreturnedtotribe,raisingquestionsaboutconsent.[news]Science2010April30328(5978):558



Document35Thehumangenomeatten.Nearlyadecadeonfromthecompletionofthedraftsequenceofthehumangenome,researchersshouldworkwiththesameintensityandfocustoapplytheresultstohealth.[editorial]Nature2010April1464(7289):649650



Document36Fan,RuipingAConfucianreflectionongeneticenhancement.AmericanJournalofBioethics2010April10(4):6270Abstract:ThisessayexploresaproperConfucianvisionongeneticenhancement.ItarguesthatwhileConfucianscanacceptaformalstartingpointthatMichaelSandelproposesinhisethicsofgiftedness,namely,thatchildrenshouldbetakenasgifts,Confucianscannotadopthisgeneraliststrategy.TheessayprovidesaConfucianfullethicsofgiftednessbyaddressingaseriesofrelevantquestions,suchaswhatkindofgiftschildrenare,wherethegiftsarefrom,inwhichwaytheyaregiven,andforwhatpurposetheyaregiven.ItindicatesthatConfuciansshouldsortoutdifferenttypesofenhancementandbringthemtothetestoftheConfucianvaluesintermsofbothConfucianvirtueprinciplesandspecificritualrules.ItconcludesthatConfucianscanacceptsometypesofenhancementbutmustrejectothers.


http://www.bioethics.net/journal/issues.php(linkmaybeoutdated)

Document37McCullough,LaurenceB.Cosmeticgeneticsandvirtuebasedrestraintsonautonomy.AmericanJournalofBioethics2010April10(4):7172



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



Document39Schanker,BenjaminRelativisticperspectivesofgeneticenhancement:achallengetofutureprogress.AmericanJournalofBioethics2010April10(4):7476



Document40Horowitz,FrancesDegenIt'snotsosimple:amorecomplexbehavioralandpsychologicalperspectiveongeneticenhancement(anddiminishment).AmericanJournalofBioethics2010April10(4):7678



* Document41Mladen,PecujlijaDorde,CosicAnOrthodoxChristianreflection:geneticenhancementmustnotbethecreationprimacyproblembetweenmanandGod.AmericanJournalofBioethics2010April10(4):7880



Document42Wu,KevinChienChangWhatwouldsomeConfuciansthinkaboutgeneticenhancementfromtheperspectiveof"humannature"?AmericanJournalofBioethics2010April10(4):8082



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



Document44Tsai,DanielFuChangReflectingonthenatureofConfucianethics.AmericanJournalofBioethics2010April10(4):8486



Document45Abbott,AlisonTurkishlawcouldcripplebioscience[news]Nature2010March25464(7288):478



Document46Vieth,AndreasConceptualandethicalproblemsintheepistemologyofgeneticinformationNewGeneticsandSociety2010March29(1):103116


http://www.informaworld.com/smpp/title~db=jour~content=g919665103(linkmaybeoutdated)

Document47Holmberg,ToraTailtales:howresearchershandletransgenicdilemmasNewGeneticsandSociety2010March29(1):3754



Document48Haddow,GillBruce,AnnCalvert,JaneHarmon,ShawnH.E.Marsden,WendyNot"human"enoughtobehumanbutnot"animal"enoughtobeanimalthecaseoftheHFEA,cybridsandxenotransplantationintheUKNewGeneticsandSociety2010March29(10):317

http://ethicslab.org/openurl/wc/0000331413/http://ethicslab.org/openurl/gt/0000331413/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331412/http://ethicslab.org/openurl/gt/0000331412/http://www.bioethics.net/journal/issues.phphttp://ethicslab.org/openurl/wc/0000331341/http://ethicslab.org/openurl/gt/0000331341/http://www.nature.com/nature/journal/v464/n7288/http://ethicslab.org/openurl/wc/0000330862/http://ethicslab.org/openurl/gt/0000330862/http://www.informaworld.com/smpp/title~db=jour~content=g919665103http://ethicslab.org/openurl/wc/0000330857/http://ethicslab.org/openurl/gt/0000330857/http://www.informaworld.com/smpp/title~db=jour~content=g919665103



Document49Dye,DanielleE.Youngs,LeanneMcNamara,BeverleyGoldblatt,JackO'Leary,PeterThedisclosureofgeneticinformation:ahumanresearchethicsperspectiveJournalofBioethicalInquiry2010March7(1):103109


http://www.springerlink.com/content/j77np47n3w2n/(linkmaybeoutdated)

Document50Wolf,LeslieE.Bouley,TimothyA.McCulloch,CharlesE.Geneticresearchwithstoredbiologicalmaterials:ethicsandpractice.IRB:EthicsandHumanResearch2010MarchApril32(2):718


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.


Document52Tucker,JonathanB.DoubleedgedDNA:preventingthemisuseofgenesynthesisIssuesinScienceandTechnology2010Spring26(3):2332


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



Document54Thescarybusinessoftinkeringwithlife[editorial]NewScientist2010February20205(2748):3


Document55Yesornotoknowingifyouhaveepsilon4?NewScientist2010February13205(2747):12


* Document56Bagla,PallavaIndia.Afteracrimoniousdebate,IndiarejectsGMeggplant[news]Science2010February12327(5967):767



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/


Document58BusseyJones,JadaGarrett,JoanneHenderson,GailMoloney,MaireadBlumenthal,ConnieCorbieSmith,GailTheroleofraceandtrustintissue/blooddonationforgeneticresearchGeneticsinMedicine2010February12(2):116121Supportedby:NHGRIfundedpublicationGrantsP50HG004488andR01HG00283002


Document59Geddes,LindaForjustice,shareDNAdatabasesNewScientist2010January9204(2742):89


Document60Timeforfullandfrankdisclosure[editorial]NewScientist2010January9204(2742):5


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.


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/


http://www.thehastingscenter.org/Publications/IRB/Archive.aspx(linkmaybeoutdated)

Document63Kaebnick,GregoryE.Newstandardsforgenesynthesisscreening.HastingsCenterReport2010JanuaryFebruary40(1):49


http://muse.jhu.edu/journals/hastings_center_report/toc/hcr.40.1.html(linkmaybeoutdated)

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

http://ethicslab.org/openurl/gt/0000329552/http://www.thehastingscenter.org/Publications/IRB/Archive.aspxhttp://ethicslab.org/openurl/wc/0000329439/http://ethicslab.org/openurl/gt/0000329439/http://muse.jhu.edu/journals/hastings_center_report/toc/hcr.40.1.htmlhttp://catalog.library.georgetown.edu/search/c?SEARCH=B1647%20.M473%20S65%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329423/http://catalog.library.georgetown.edu/search/c?SEARCH=QH506%20.N6913%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329328/http://catalog.library.georgetown.edu/search/c?SEARCH=QH437%20.H63%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329250/http://ethicslab.org/openurl/wc/0000329248/http://catalog.library.georgetown.edu/search/c?SEARCH=TP248.215%20.P43%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329216/

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

http://ethicslab.org/openurl/wc/0000329196/http://ethicslab.org/openurl/wc/0000329195/http://catalog.library.georgetown.edu/search/c?SEARCH=QH332%20.E88%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329176/http://catalog.library.georgetown.edu/search/c?SEARCH=TP248.2%20.B83%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329170/http://ethicslab.org/openurl/wc/0000329166/http://catalog.library.georgetown.edu/search/c?SEARCH=QH431%20.H8356%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329155/http://catalog.library.georgetown.edu/search/c?SEARCH=QH442%20.T3258%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329142/

* 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.

http://catalog.library.georgetown.edu/search/c?SEARCH=QH332%20.U545%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329138/http://www.bioethics.gov/documents/synthetic-biology/PCSBI-Synthetic-Biology-Report-12.16.10.pdfhttp://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.W495%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329125/http://catalog.library.georgetown.edu/search/c?SEARCH=RA776.95%20.G64%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329120/http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.G4116%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329119/http://catalog.library.georgetown.edu/search/c?SEARCH=TP248.215%20S36%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329117/http://catalog.library.georgetown.edu/search/c?SEARCH=QH331%20.S43%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329114/

Callnumber:HD9999.B443A78152010

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

http://catalog.library.georgetown.edu/search/c?SEARCH=HD9999%20.B443%20A7815%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329086/http://catalog.library.georgetown.edu/search/c?SEARCH=RB155%20.B665%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329081/http://catalog.library.georgetown.edu/search/c?SEARCH=QH325%20.A895%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329080/http://catalog.library.georgetown.edu/search/c?SEARCH=QH447%20.A54%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329079/http://catalog.library.georgetown.edu/search/c?SEARCH=QH445.2%20.D368%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329078/http://catalog.library.georgetown.edu/search/c?SEARCH=RB155%20.M345%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329076/http://catalog.library.georgetown.edu/search/c?SEARCH=K3611%20.I5%20E87%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329075/

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

http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.B47%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329073/http://catalog.library.georgetown.edu/search/c?SEARCH=BR110%20.P42%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329070/http://catalog.library.georgetown.edu/search/c?SEARCH=QH442%20.H395%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329032/http://catalog.library.georgetown.edu/search/c?SEARCH=RB155%20.E455%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329024/http://catalog.library.georgetown.edu/search/c?SEARCH=QH438.7%20.C664%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329023/http://catalog.library.georgetown.edu/search/c?SEARCH=RB155.65%20.C65%202009&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000329020/

Detroit,MI:Omnigraphics,2010.759p.Callnumber:RB155.5.G4552010

Document96O'Leary,PeterZimmern,R.L.Genomicsandpublichealth:translatingresearchintopublicbenefit.[editorial]PublicHealthGenomics201013(4):193196


http://www.karger.com/phg/(linkmaybeoutdated)

Document97O'Doherty,KieranC.Hawkins,A.Structuringpublicengagementforeffectiveinputinpolicydevelopmentonhumantissuebiobanking.PublicHealthGenomics201013(4):197206



Document98Meslin,EricM.Thevalueofusingtopdownandbottomupapproachesforbuildingtrustandtransparencyinbiobanking.PublicHealthGenomics201013(4):207214



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



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


http://catalog.library.georgetown.edu/search/c?SEARCH=RB155.5%20.G455%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000328994/http://ethicslab.org/openurl/wc/0000328592/http://ethicslab.org/openurl/gt/0000328592/http://www.karger.com/phg/http://ethicslab.org/openurl/wc/0000328591/http://ethicslab.org/openurl/gt/0000328591/http://www.karger.com/phg/http://ethicslab.org/openurl/wc/0000328590/http://ethicslab.org/openurl/gt/0000328590/http://www.karger.com/phg/http://ethicslab.org/openurl/wc/0000328588/http://ethicslab.org/openurl/gt/0000328588/http://www.karger.com/phg/http://ethicslab.org/openurl/wc/0000328586/http://ethicslab.org/openurl/gt/0000328586/

Document101Etchegary,HollyCappelli,M.Potter,B.Vloet,M.Graham,I.Walker,M.Wilson,B.Attitudeandknowledgeaboutgeneticsandgenetictesting.PublicHealthGenomics2010(2009December)13(2):8088


Document102Devettere,RaymondJ.MedicalgeneticsInhis:PracticalDecisionMakinginHealthCareEthics:CasesandConcepts.3rdedition.Washington,DC:GeorgetownUniversityPress,2010:420457Callnumber:R724.D482010

Document103Delfanti,AlessandroCastelfranchi,YurijPitrelli,Nico"WhatDr.Venterdidonhisholidays":exploration,hacking,entrepreneurshipinthenarrativesoftheSorcererIIexpeditionNewGeneticsandSociety2009December28(4):415430


Document104Hui,E.Chow,K.Wu,D.Liu,A.Li,Y.OpinionsurveyoftheHongKonggeneralpublicregardinggenomicscienceandtechnologyandtheirethicalandsocialimplicationsNewGeneticsandSociety2009December28(4):381400


Document105Borenstein,JasonThewisdomofcaution:geneticenhancementandfuturechildren.ScienceandEngineeringEthics2009December15(4):517530



Document106vandenBelt,HenkPlayingGodinFrankenstein'sfootsteps:syntheticbiologyandthemeaningoflife.Nanoethics2009December3(3):257268Abstract:Theemergentnewscienceofsyntheticbiologyischallengingentrencheddistinctionsbetween,amongstothers,lifeandnonlife,thenaturalandtheartificial,theevolvedandthedesigned,andeventhematerialandtheinformational.Wheneversuchculturallysanctionedboundariesarebreached,researchersareinevitablyaccusedofplayingGodortreadinginFrankenstein'sfootsteps.Bioethicists,theologiansandeditorsofscientificjournalsfeel

http://ethicslab.org/openurl/wc/0000328585/http://ethicslab.org/openurl/gt/0000328585/http://catalog.library.georgetown.edu/search/c?SEARCH=R724%20.D48%202010&sortdropdown=-&searchscope=4http://ethicslab.org/openurl/wc/0000328222/http://ethicslab.org/openurl/gt/0000328222/http://ethicslab.org/openurl/wc/0000328220/http://ethicslab.org/openurl/gt/0000328220/http://ethicslab.org/openurl/wc/0000328118/http://ethicslab.org/openurl/gt/0000328118/http://www.springerlink.com/content/120482/

obligedtoprovideanauthoritativeanswertotheambiguousquestionofthe'meaning'oflife,bothasascientificdefinitionandasanexplicationwithwiderexistentialconnotations.Thisarticleanalysestheargumentsmootedintheemergingsocietaldebatesonsyntheticbiologyandthewayitspractitionersrespondtocriticism,mostlybyassumingadefiantpostureorprofessinghumility.Itexplorestherelationshipbetweenthe'playingGod'themeandtheFrankensteinmotifandexaminesthedoctrinalstatusofthe'playingGod'argument.Oneparticularlyinterestingfindingisthatliberaltheologiansgenerallydenythereligiouscharacterofthe'playingGod'argumentaresponsewhichfitsinwiththecuriousfactthatthisargumentisusedmainlybysecularorganizations.Syntheticbiology,itisthereforemaintained,doesnotoffendsomuchtheGodoftheBibleasadeifiedNature.Whilesynthesesofartificiallifeformscausesomevagueuneasinessthatlifemayloseitsspecialmeaning,mostconcernsturnouttobenarrowlyanthropocentric.Aslongassyntheticbiologycreatesonlynewmicrobiallifeanddoesnotdirectlyaffecthumanlife,itwillinalllikelihoodbeconsideredacceptable.



Document107Murphy,JuliScott,JoanKaufman,DavidGeller,GailLeRoy,LisaHudson,KathyPublicperspectivesoninformedconsentforbiobanking.AmericanJournalofPublicHealth2009December99(12):21282134Abstract:TheNationalInstitutesofHealthandotherfederalhealthagenciesareconsideringestablishinganationalbiobanktostudytherolesofgenesandenvironmentinhealth.Weassessedthepublic'sattitudestowardtheproposedbiobank,includingpreferencesforprovidinginformedconsent.Sixteenfocusgroupswereconducted,andthemesarisingfromthefocusgroupsweretestedinalarge,representativesurvey(n=4659)ofthegeneralpopulation.Ourresearchdemonstratesthatwhenconsideringparticipatinginagenomicbiobank,individualswantongoingchoicesandcontroloveraccesstotheirsamplesandinformation.


http://ajph.aphapublications.org/content/vol99/issue12/(linkmaybeoutdated)

Document108Klitzman,RobertAmImygenes?:questionsofidentityamongindividualsconfrontinggeneticdiseaseGeneticsinMedicine2009December11(12):880889Supportedby:NHGRIfundedpublicationGrant5R01HG00243101


Document109Dalton,RexMexico'stransgenicmaizeunderfire.[news]Nature2009November26462(7272):404



Document110Mayor,SusanScientiststoconsultonanimalscontaininghumanmaterial[news]

http://ethicslab.org/openurl/wc/0000328106/http://ethicslab.org/openurl/gt/0000328106/http://www.springerlink.com/content/120571/http://ethicslab.org/openurl/wc/0000328104/http://ethicslab.org/openurl/gt/0000328104/http://ajph.aphapublications.org/content/vol99/issue12/http://ethicslab.org/openurl/wc/0000328095/http://ethicslab.org/openurl/gt/0000328095/http://ethicslab.org/openurl/wc/0000327998/http://ethicslab.org/openurl/gt/0000327998/http://www.nature.com/nature/journal/v462/n7272/

BritishMedicalJournal2009November14339(7730):11061107


http://www.bmj.com(linkmaybeoutdated)

Document111Roehr,BobDoctorsexploreethicsandresearchpotentialofstoringbloodsamplesfromnewborns[news]BritishMedicalJournal2009October3339(7724):774775


http://www.bmj.com(linkmaybeoutdated)

Document112Bathe,OliverF.McGuire,AmyL.TheethicaluseofexistingsamplesforgenomeresearchGeneticsinMedicine2009October11(10):712715


Document113Eberl,JasonT.Ballard,RebeccaA.MetaphysicalandethicalperspectivesoncreatinganimalhumanchimerasJournalofMedicineandPhilosophy2009October34(5):470486Abstract:Thispaperaddressesseveralquestionsrelatedtothenature,production,anduseofanimalhuman(ah)chimeras.Attheheartoftheissueiswhethercertaintypesofahchimerasshouldbebroughtintoexistence,and,iftheyare,howweshouldtreatsuchcreatures.Inourcurrentresearchenvironment,werecognizeadichotomybetweenresearchinvolvingnonhumananimalsubjectsandresearchinvolvinghumansubjects,andtheclassificationofaresearchprotocolintooneofthesecategorieswilltriggerdifferentethicalstandardsastothemoralpermissibilityoftheresearchinquestion.Areahchimerasentitledtothemorerestrictiveandprotectiveethicalstandardsappliedtohumanresearchsubjects?WeelucidateanAristotelianThomisticmetaphysicalframeworkinwhichtoarguehowsuchchimerasoughttobedefinedontologically.Wethenexaminewhenthecreationof,andexperimentationupon,certaintypesofahchimerasmaybemorallypermissible.


Document114Hawkins,NaomideVries,JantinaBoddington,PaulaKaye,JaneHeeney,CatherinePlanningfortranslationalresearchingenomicsGenomeMedicine(electronic)2009September291(9):87


http://genomemedicine.com(linkmaybeoutdated)

Document115

http://ethicslab.org/openurl/wc/0000327939/http://ethicslab.org/openurl/gt/0000327939/http://www.bmj.com/http://ethicslab.org/openurl/wc/0000327586/http://ethicslab.org/openurl/gt/0000327586/http://www.bmj.com/http://ethicslab.org/openurl/wc/0000327501/http://ethicslab.org/openurl/gt/0000327501/http://ethicslab.org/openurl/wc/0000327435/http://ethicslab.org/openurl/gt/0000327435/http://ethicslab.org/openurl/wc/0000327429/http://ethicslab.org/openurl/gt/0000327429/http://genomemedicine.com/

Biobanksneedpharma[editorial]Nature2009September24461(7263):448


http://www.nature.com/nature/(linkmaybeoutdated)

Document116Callaway,EwenKnockoutthepaingenes[news]NewScientist2009September511203(2724):89


Document117Painfreebutnotguiltfree[editorial]NewScientist2009September511203(2724):5


Document118CheckHayden,ErikaKeepinggenesoutofterrorists'hands[news]Nature2009September3461(7260):22



Document119Kaebnick,GregoryE.Syntheticbiology:engineeringlifeMedicalEthicsNewsletter[LaheyClinic]2009Fall16(3):67


http://www.lahey.org/Ethics/(linkmaybeoutdated)

Document120Waldby,CatherineBiobankinginSingapore:postdevelopmentalstate,experimentalpopulationNewGeneticsandSociety2009September28(3):253265


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.


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.


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.


http://ethicslab.org/openurl/wc/0000327072/http://ethicslab.org/openurl/gt/0000327072/http://ethicslab.org/openurl/wc/0000327071/http://ethicslab.org/openurl/gt/0000327071/http://ethicslab.org/openurl/wc/0000327070/http://ethicslab.org/openurl/gt/0000327070/

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.


Document125Petrini,CarloAbibliographyconcerninginformedconsentandbiobanking:documentsfromnationalandinternationalbodies.JournalInternationaldeBiothique=InternationalJournalofBioethics2009September20(3):97105Abstract:Thearticlecontainsalistofnationalandinternationaldocumentsaddressingtheethicalaspectsofbiobanking,whichweredraftedbynationalbioethicscommitteesnationaladhoccommissionsandnationalandinternationalagencies,organizations,andsocieties.Thegreaterpartofthedocumentsspecificallyfocusesonquestionsinvolvingtheethicsofinformedconsentforbiobanking.Thedocumentsaregroupedaccordingtothenatureofthepromulgatingbody,andarelistedalphabeticallywithineachgroupaccordingtothepromulgatingbody.SpecialattentionisdevotedtodocumentsissuedbytheEuropeanUnionandtheCouncilofEurope.


Document126Hongladarom,SorajPrivacy,theindividualandgeneticinformation:aBuddhistperspective.Bioethics2009September23(7):403412Abstract:Bioinformaticsisanewfieldofstudywhoseethicalimplicationsinvolveacombinationofbioethics,computerethicsandinformationethics.ThispaperisanattempttoviewsomeoftheseimplicationsfromtheperspectiveofBuddhism.Privacyisacentralconcerninbothcomputer/informationethicsandbioethics,andwithinformationtechnologybeingincreasinglyutilizedtoprocessbiologicalandgeneticdata,theissuehasbecomeevenmorepronounced.Traditionally,privacypresupposestheindividualselfbutasBuddhismdoesawaywiththeultimateconceptionofanindividualself,ithastofindawaytoanalyseandjustifyprivacythatdoesnotpresupposesuchaself.Itdoesthisthroughapragmaticconceptionthatdoesnotdependonapositingofthesubstantialself,whichisthenfoundtobeunnecessaryforaneffectiveprotectionofprivacy.Asitmaybepossibleonedaytolinkgeneticdatatoindividuals,theBuddhistconceptionperhapsoffersamoreflexibleapproach,aswhatisconsideredtobeintegraltoanindividualpersonisnotfixedinobjectivitybutdependsonconvention.


http://www3.interscience.wiley.com/journal/122527835/issue(linkmaybeoutdated)

http://ethicslab.org/openurl/wc/0000327069/http://ethicslab.org/openurl/gt/0000327069/http://ethicslab.org/openurl/wc/0000327067/http://ethicslab.org/openurl/gt/0000327067/http://ethicslab.org/openurl/wc/0000327004/http://ethicslab.org/openurl/gt/0000327004/http://www3.interscience.wiley.com/journal/122527835/issue

Document127Maschke,KarenJ.ImplicationsHastingsCenterReport2009SeptemberOctober39(5):insidefrontcover


Document128Kaiser,JocelynCashstarveddeCODEislookingforarescuerforitsbiobank[news]Science2009August28325(5944):1054



Document129Theethicsofeggmanipulation[editorial]Nature2009August27460(7259):1057



Document130Pennisi,ElizabethTwostepsforwardforsyntheticbiology[news]Science2009August21325(5943):928929



Document131Pollack,AndrewScientistsshowthatit'spossibletocreatefakeDNAevidence[news]NewYorkTimes2009August18p.D3

http://www.nytimes.com(linkmaybeoutdated)

Document132IslamicOrganizationforMedicalSciences[IOMS]Genetics,geneticengineering,thehumangenes,andgenetictreatmentanIslamicperspectiveIslamicOrganizationforMedicalSciencesNewsletter2009August12(2):6p.[Online].Accessed:http://www.islamset.com/newsletter/secondissue/main_topic/Recommendations.html[2011July5]

http://ethicslab.org/openurl/wc/0000326905/http://ethicslab.org/openurl/gt/0000326905/http://ethicslab.org/openurl/wc/0000326884/http://ethicslab.org/openurl/gt/0000326884/http://www.sciencemag.org/content/vol325/issue5944/http://ethicslab.org/openurl/wc/0000326881/http://ethicslab.org/openurl/gt/0000326881/http://www.nature.com/nature/http://ethicslab.org/openurl/wc/0000326857/http://ethicslab.org/openurl/gt/0000326857/http://www.sciencemag.org/content/vol325/issue5943/http://ethicslab.org/openurl/wc/0000326824/http://www.nytimes.com/

http://www.islamset.com/(linkmaybeoutdated)

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.


http://www.gspjournal.com(linkmaybeoutdated)

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.



Document135Birch,KeanNeoliberalisingbioethics:bias,enhancement,andeconomisticethicsGenomics,Society,andPolicy[electronic]2008August4(2):110

http://ethicslab.org/openurl/wc/0000326790/http://www.islamset.com/http://ethicslab.org/openurl/wc/0000326567/http://ethicslab.org/openurl/gt/0000326567/http://www.gspjournal.com/http://ethicslab.org/openurl/wc/0000326566/http://ethicslab.org/openurl/gt/0000326566/http://www.gspjournal.com/

Abstract:Inbioethicsthereisanongoingdebateabouttheethicalcaseforhumanenhancementthroughnewbiomedicaltechnologies.Inthisdebatetherearebothsupportersandopponentsofhumanenhancementtechnologiessuchasgeneticimprovementsofcognitiveabilities(eg,intelligence).Thesupportersarguethathumanenhancementwillleadtohealthierandthereforebetterlives,meaningthatanydelaystotheintroductionofsuchtechnologiesisproblematic.Incontrast,theopponentsarguethatnewtechnologieswillnotsolveproblemssuchasinequalityandsocialjustice.Inordertoovercomeoppositiontohumanenhancement,BostromandOrdhaveoutlinedatesttoevaluateethicalargumentsforstatusquobiasorwhattheycallintuitivejudgementsintheassessmentofhumanenhancement.ThisarticleisaresponsetotheirpaperinwhichIraiseanumberofproblemswiththeirposition,particularlywiththeirstatusquobiastestandtheincorporationofeconomisticthinkingintotheirethicalarguments.



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.


http://www.jmp.oxfordjournals.org(linkmaybeoutdated)

Document137AlUbaydil,MohammadNavarro,RobGenomicelectronichealthrecords:opportunitiesandchallengesGenomeMedicine(electronic)2009July221(7):73


http://genomemedicine.com(linkmaybeoutdated)

Document138Risher,MichaelT.RacialdisparitiesindatabankingofDNAprofilesGeneWatch2009JulyAugust22(34):2224,35

http://ethicslab.org/openurl/wc/0000326563/http://ethicslab.org/openurl/gt/0000326563/http://www.gspjournal.com/http://ethicslab.org/openurl/wc/0000326545/http://ethicslab.org/openurl/gt/0000326545/http://www.jmp.oxfordjournals.org/http://ethicslab.org/openurl/wc/0000326498/http://ethicslab.org/openurl/gt/0000326498/http://genomemedicine.com/http://ethicslab.org/openurl/wc/0000326278/


Document139Kahn,JonathanBiDilandracializedmedicineGeneWatch2009JulyAugust22(34):1819,31,34


Document140DrabiakSyed,KatherineStatecodificationoffederalregulatoryambiguitiesinbiobankingandgeneticresearch.JournalofLegalMedicine2009JulySeptember30(3):299327


Document141SchulteindenBaumen,TobiasPaci,DanieleIbarreta,DoloresDataprotectioninbiobanksaEuropeanchallengeforthelongtermsustainabilityofbiobanking.RevistadeDerechoyGenomaHumano=LawandtheHumanGenomeReview2009JulyDecember(31):1325


Document142Sorensen,KellyGeneticenhancementsandexpectationsJournalofMedicalEthics2009July35(7):433435Abstract:Somearguethatgeneticenhancementsandenvironmentalenhancementsarenotimportantlydifferent:environmentalenhancementssuchasprivateschoolsandchesslessonsaresimplytheoldschoolwaytohaveadesignerbaby.Iarguethatthereisanimportantdistinctionbetweenthetwopracticesadistinctionthatmakesstaterestrictionsongeneticenhancementsmorejustifiablethanstaterestrictionsonenvironmentalenhancements.Thedifferenceisthatparentshavenosettledexpectationsaboutgeneticenhancements.


http://jme.bmj.com(linkmaybeoutdated)

Document143Lane,EarlHam,BeckyPersonalizedmedicine:successestemperedbysignificantchallenges[news]Science2009June26324(5935):1658


http://www.sciencemag.org/archive/(linkmaybeoutdated)

http://ethicslab.org/openurl/gt/0000326278/http://ethicslab.org/openurl/wc/0000326277/http://ethicslab.org/openurl/gt/0000326277/http://ethicslab.org/openurl/wc/0000326224/http://ethicslab.org/openurl/gt/0000326224/http://ethicslab.org/openurl/wc/0000326214/http://ethicslab.org/openurl/gt/0000326214/http://ethicslab.org/openurl/wc/0000326130/http://ethicslab.org/openurl/gt/0000326130/http://jme.bmj.com/http://ethicslab.org/openurl/wc/0000326083/http://ethicslab.org/openurl/gt/0000326083/http://www.sciencemag.org/archive/

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.


http://www.biomedcentral.com/14726939/10/4(linkmaybeoutdated)

Document145Todorova,BogdanaKolev,VasilMoralimperativeintheageofgeneticmedicineFormosanJournalofMedicalHumanities2009June10(12):105116


http://www.csmu.edu.tw/genedu/public_html/journal.htm(linkmaybeoutdated)

Document146Todorova,BogdanaKolev,VasilMoralimperativeintheageofgeneticmedicineFormosanJournalofMedicalHumanities2009June10(12):105116


http://www.csmu.edu.tw/genedu/public_html/journal.htm(linkmaybeoutdated)

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


Document148Shineha,RyumaKato,KazutoPublicengagementinJapanesepolicymaking:ahistoryofthegeneticallymodifiedorganismsdebateNewGeneticsandSociety2009June28(2):139152


Document149Harvey,AlisonFromgeneticrisktopostgenomicuncertainties:nutrigenomicsandthebirthofthe"geneticentrepreneur"NewGeneticsandSociety2009June28(2):119137


Document150Silva,SusanaMachado,HelenaTrust,moralityandaltruisminthedonationofbiologicalmaterial:thecaseofPortugalNewGeneticsandSociety2009June28(2):103118


Document151Kayser,ManfredSchneider,PeterM.DNAbasedpredictionofhumanexternallyvisiblecharacteristicsinforensics:motivations,scientificchallenges,andethicalconsiderations.ForensicScienceInternational.Genetics2009June3(3):154161


Document152Knoppers,BarthaMariaKnoppersReturnof"Accurate"and"Actionable"Results:Yes!AmericanJournalofBioethics2009JuneJuly9(67):107109


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


http://dx.doi.org/10.1080/15265160902966795(linkmaybeoutdated)

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.


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.


Document156Timetoconnect[editorial]Nature2009May28459(7246):483



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



Document158Schatten,GeraldMitalipov,ShoukhratTransgenicprimateoffspring[news]Nature2009May28459(7246):515516



Document159Germany'sDNAlaw[newsbrief]NewScientist2009May2329202(2709):5


Document160Marshall,EliotLawsuitchallengeslegalbasisforpatentinghumangenes[news]Science2009May22324(5930):10001001


http://www.sciencemag.org/archive/(linkmaybeoutdated)

Document161Colorado:DNAlawissignedNewYorkTimes2009May22p.A18


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/


Document163Kaye,JaneHeeney,CatherineHawkins,NaomideVries,JantinaBoddington,PaulaDatasharingingenomicsreshapingscientificpractice.NatureReviews.Genetics2009May10(5):331335


http://www.nature.com/nrg(linkmaybeoutdated)

Document164Knoppers,BarthaMariaGenomicsandpolicymaking:fromstaticmodelstocomplexsystems?HumanGenetics2009May125(4):375379


www.springerlink.com(linkmaybeoutdated)

Document165Geneticprivacyandpiracy.NatureCellBiology2009May11(5):509


Document166Vermeulen,EricSchmidt,MarjankaK.Aaronson,NeilK.Kuenen,MariannevanLeeuwen,FloraE.Obtaining'fresh'consentforgeneticresearchwithbiologicalsamplesarchived10yearsago.EuropeanJournalofCancer2009May45(7):11681174


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.



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.



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