Biobanks for Europe - European Commission - Europa

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EUROPEAN COMMISSIONDirectorate-General for Research and InnovationDirectorate B — European Research AreaUnit B6 — Ethics and genderContact: Lino PAULAEuropean CommissionB-1049 BrusselsE-mail: lino.paula@ec.europa.eu
EUROPEAN COMMISSIONBiobanks for EuropeA challenge for governanceReport of the Expert Group on Dealing with Ethical and RegulatoryChallenges of International Biobank ResearchChair: Herbert GottweisRapporteur: Jane KayeMembers: Fabrizia Bignami, Emmanuelle Rial-Sebbag, RobertoLattanzi, Milan Macek Jr.Directorate-General for Research and Innovation2012Science in societyEUR 25302 EN
Page 1: Biobanks forEuropeA Challenge for G
Page 5 and 6: TABLE OF CONTENTSExecutive summary
Page 7 and 8: E 5Executive summaryThe member stat
Page 9 and 10: E 7Recommendation 4: Sustainable g
Page 11 and 12: I9frameworks and the principles for
Page 13 and 14: W G11The bene t of a relevant and
Page 15: T S B133.1• What is a Biobank?Bi
Page 18 and 19: 16T S BEpidemiological case-contro
Page 20 and 21: 18T S BThere are several important
Page 22 and 23: 20B EBiobank networking and harmon
Page 24 and 25: 22B Etia are increasing, there are
Page 26 and 27: 24P A T BThis section of the report
Page 28 and 29: 26P A T BFigure 2: Would you be wil
Page 30 and 31: 28P A T BFigure 3: Form of consent
Page 32 and 33: 30P A T BFigure 4: Levels of concer
Page 34 and 35: 32P A T Bto consider modes of inqui
Page 36 and 37: 34T E6• The regulation of bio
Page 38 and 39: 36T E6.1.2• The European Unio
Page 40 and 41: 38T EAccordingly, the above pro
Page 42 and 43: 40T EThe inconsistencies betwee
Page 44 and 45: 42T E• consent by the partici
Page 46 and 47: 44T E6.2.1• Research Ethics C
Page 48 and 49: 46C Gerty bene ts 132 ; and how to
Page 50 and 51: 48C GRecommendation 1Member states
Page 52 and 53:
50C G eld of biobanking, and in pa
Page 54 and 55:
52C Gawareness of the scienti c ne
Page 56 and 57:
54I B G8• Innovations in Biobank
Page 58 and 59:
56I B Gmore formal oversight bodie
Page 60 and 61:
58I B GCHRIS 179 projects for biob
Page 62 and 63:
60C R9• Conclusion andRecommenda
Page 64 and 65:
62A : S B EAnnex 1: Survey of Bi
Page 69:
European CommissionEUR 25302 — Bi
Page 72:
KI-NA-25-302-EN-CThis expert group
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