tailieunhanh - báo cáo khoa học: " Towards a data sharing Code of Conduct for international genomic research"

Tuyển tập báo cáo các nghiên cứu khoa học quốc tế ngành y học dành cho các bạn tham khảo đề tài: Towards a data sharing Code of Conduct for international genomic research | Knoppers et al. Genome Medicine 2011 3 46 http content 3 7 46 w Genome Medicine CORRESPONDENCE L Towards a data sharing Code of Conduct for international genomic research I4t m n no re Io n n iforRI l rric AnnoM rioT cco lc2HolloRiidin-liMcno2 bro l wo- Mưlàno rocHnôroc DdiLi idividiidM loppeis jeiiiiiieinndiiis AI II leividiiei dssc isdueiicDuuii I Ljwsi ie jdi leKdye Mylei leDesci lei les and Md n H ZdWdti1 2 Abstract Ddtd shdiiig is iiciedsiigly iegdided ds di ethicdl did scieitific imperative thdt ddvdices kiowledge did thereby respects the coittibutiois of the participants. Becduse of this did the ever-increasing dmouit of ddtd dccess requests cuiieitly filed diouid the woild three groups hdve decided to develop ddtd shdiiig piiiciples specific to the coitext of colldboidtive iitemdtioidl geiomics iesedich. These groups die the iitemdtioidl Public Populdtioi Project ii Geiomics P3G di iitemdtioidl coisoitium of projects pditdkiig ii ldige-scdle geietic epidemiologicdl studies did biobdiks the Euiopedi Netwoik foi Geietic did Geiomic Epidemiology ENGAGE d iesedich project dimiig to tidisldte ddtd fiom ldige-scdle epidemiologicdl iesedich iiitidtives iito ielevdit cliiicdl iifoimdtioi did the Ceitie foi Hedlth Ldw did Emeigiig Technologies HeLEX . We propose sevei diffeieit piiiciples did d pielimiidiy iitemdtioidl ddtd shdiiig Code of Coiduct foi oigoiig discussioi. Introduction As early as 2002 the International Ethics Committee of the Human Genome Organization HUGO stated that human genomic databases should be considered as global public goods 1 . In this statement global public goods were defined as goods whose scope extends worldwide are enjoyable by all with no groups excluded and when consumed by one individual are not depleted for others 2 . Buttressed by the Bermuda Principles of 1996 2 and mirrored in the Fort Lauderdale rules of 2003 3 the common philosophy of sharing resources was reaffirmed in the 2008 International

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