{"id":4048,"date":"2017-01-20T15:15:59","date_gmt":"2017-01-20T15:15:59","guid":{"rendered":"https:\/\/www.wma.net\/wp-content\/uploads\/2017\/01\/Crawley-Copenhagen-WMA-Health-Databases-_-Biobanks-Francis-P-Crawley-15-09-15_2_0.pdf"},"modified":"2017-01-20T15:15:59","modified_gmt":"2017-01-20T15:15:59","slug":"crawley-copenhagen-wma-health-databases-_-biobanks-francis-p-crawley-15-09-15_2_0-2","status":"inherit","type":"attachment","link":"https:\/\/www.wma.net\/es\/crawley-copenhagen-wma-health-databases-_-biobanks-francis-p-crawley-15-09-15_2_0-2\/","title":{"rendered":"Crawley-Copenhagen-WMA-Health-Databases-_-Biobanks-Francis-P-Crawley-15-09-15_2_0"},"author":2,"comment_status":"open","ping_status":"closed","template":"","meta":[],"acf":[],"description":{"rendered":"

Crawley-Copenhagen-WMA-Health-Databases-_-Biobanks-Francis-P-Crawley-15-09-15_2_0<\/a><\/p>\n

1
\nHealth Databases & Biobanks
\nPromoting & Protecting Public Health
\nthrough Custodianship
\nThe WMA Copenhagen Meeting on
\nHealth Databases and Biobanks
\nCopenhagen, Denmark
\n15-16 September 2015
\nFrancis P. Crawley
\nClinical Practice Alliance \u2013 Europe
\nfpc@gcpalliance.org
\nHealth Databases & Biobanks
\nThe Purpose
\nto promote
\npublic health & individual health
\n2
\nThree Key Concepts
\n\u2022 Health is our greatest good. Promoting
\nhealth is a first responsibility of
\ngovernments and our best investment.
\n\u2022 \u2018My health is (y)our health; (y)our health is
\nmy health.\u2019
\n\u2022 Health is a shared interest and a shared
\nresponsibility.
\n3
\nThe Core Value
\n\u2018It is the duty of the physician to promote and
\nsafeguard the health, well-being and rights of
\npatients, including those who are involved in
\nmedical research. The physician’s knowledge
\nand conscience are dedicated to the fulfilment of
\nthis duty.\u2019
\nParagraph 4, Declaration of Helsinki, 2013
\n4
\nConsiderations Regarding the WMA Draft
\nDeclaration on Ethical Considerations
\nRegarding Health Databases and Biobanks (2015-03-18)
\n\u2022 Distinguish between human persons &
\ncommunities and materials & data derived
\nfrom human persons
\n\u2022 Achieve a renewed concept of consent
\n! participatory consent
\n\u2022 Custodianship should be the principle
\nframework for health databases & biobanks
\n5
\nCustodianship
\n\u2022 Health data may not be considered as other kinds of
\ndata; health data is a public good (res publica)
\n\u2022 Health data, healthcare practice, health sciences,
\nhealth knowledge may not be owned
\n\u2022 Replace \u2018ownership\u2019 with \u2018custodianship\u2019
\n\u2022 Health (data) custodianship = \u2018the responsible
\nreception, organization, protection, and sharing of
\nhealth data, information, and knowledge\u2019
\n\u2018the good health custodian\u2019 = \u2018the good health librarian\u20196
\nThe Need for Public Authorities
\n\u2022 The collection, storage, and use of health
\ndatabases & biobanks should be overseen,
\nregulated, and evaluated by public (health)
\nauthorities
\n\u2022 Current (research) ethics committees should
\nmaintain a focus on research on human
\npersons
\n7<\/p>\n"},"caption":{"rendered":"

Crawley-Copenhagen-WMA-Health-Databases-_-Biobanks-Francis-P-Crawley-15-09-15_2_0 1 Health Databases & Biobanks Promoting & Protecting Public Health through Custodianship The WMA Copenhagen Meeting on Health Databases and Biobanks Copenhagen, Denmark 15-16 September 2015 Francis P. Crawley Clinical Practice Alliance \u2013 Europe fpc@gcpalliance.org Health Databases & Biobanks The Purpose to promote public health & individual health 2 Three Key Concepts \u2022 Health […]<\/p>\n"},"alt_text":"","media_type":"file","mime_type":"application\/pdf","media_details":{},"post":null,"source_url":"https:\/\/www.wma.net\/wp-content\/uploads\/2017\/01\/Crawley-Copenhagen-WMA-Health-Databases-_-Biobanks-Francis-P-Crawley-15-09-15_2_0.pdf","_links":{"self":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/media\/4048"}],"collection":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/media"}],"about":[{"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/types\/attachment"}],"author":[{"embeddable":true,"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.wma.net\/es\/wp-json\/wp\/v2\/comments?post=4048"}]}}