Snaedal-HD-_-BB-Copenhagen-2015
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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