Snaedal-HD-_-BB-Copenhagen-2015

Health’Databases’and’Biobanks
A’WMA’conference’in’Copenhagen
15<16.'september 2015 Jon'Snaedal Chair'of'the'WG'of'the'WMA Historical'perspectives The'WMA'has'been'concerned'about'health' data'for'decades. As'early'as'1973'in'a'“Resolution'on'Medical' Secrecy”'addressing'Computers'and'Confidentiality' in'Medicine'(27th GA'in'Munich): Preamble:'“There'is'an'increasing'tendency'towards' an'intrusion'on'Medical'Secrecy” “The'GA'appeals'to'the'United'Nations'to'give' needed'help'and'to'show'ways'….” GA'in'Venice'in'1983 The'1973'resolution'amended,'renamed'and' extended'and'is'now'a'statement: The'WMA'Statement'on'the'use'of'Computers'in' Medicine: “Medical'data'banks'should'never'be'linked'to'other' central'data'banks” Development'1998<2002 In'Iceland,'plans'on'central'health'database'on' all'health'data'from'every'person'in'the'country' was'planned'but'owned'by'a'private'company. The'IcMA brought'the'issue'to'the'WMA'that' responded'promptly The'issue'was'on'the'agenda'of'WMA'meetings' for'the'next'two'years'resulting'in' an'extensive'declaration'on'the' ethical'use'of'health'data GA'in'Washington'DC'in'2002 Adoption'of'a'Declaration: The$WMA$Declaration$on$Ethical$Consideration$regarding$Health$ Databases: • Strong'association'to'the'Declaration'of'Helsinki'(DoH). • Central'ethical'principles: – Access'of'information'by'patients – Confidentiality – Consent – De