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    T3.4Report on Ethical, Legal and Political

    Implications (of the New Framework

    Model)

    TELL ME - Transparent communication in Epidemics: Learning Lessons from

    experience, delivering effective Messages, providing Evidence.

    Project co-funded by the European Commission within the 7 th Framework

    Programme HEALTH theme

    2nd Reporting period

    WP3 Developing New Communication Strategies

    Responsible Partner: VUB

    Contributing partners:

    Due date of the deliverable: M22 (May 31st2014)

    Dissemination level: PU

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    D3.4 Ethical, Legal and Political Implications of the New Framework Model

    TELL ME project GA: 278723

    2

    Document Management

    T1.5 Ethical, Legal and Political Implications (of the New Framework Model)

    Task: 3.4

    Leader: VUB Other contributors: none

    History of changes:

    Vn Statu

    s

    Date Organisation / Person

    responsible

    Reason for Change

    V1 Draft 15/04/14 VUB- Paul Quinn First draft

    V2 Draft 10/05/14 VUB - Paul De Hert/Paul

    Quinn

    Second draft

    Vf Final 30/05/014 VUB - Paul Quinn/Paul

    De Hert

    Final draft

    Vf Final 27/05/2014 VUB Paul Quinn Implemented changes of format

    suggested by Dimitris Dimitriou after

    review

    Vf Final 09/09/2014 VUB Paul Quinn Implemented changes suggested by

    Manfred Green after review

    PROJECT FULL TITLE Transparent communication in Epidemics: Learning Lessons from

    experience, delivering effective Messages, providing Evidence.

    PROJECT ACRONYM TELL ME

    Collaborative Project funded under Theme HEALTH.2011.2.3.3-3

    Development of an evidence-based behavioural and communication

    package to respond to major epidemics outbreaks

    GRANT AGREEMENT 278723

    STARTING DATE 01/02/2012

    DURATION 36 months

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    D3.4 Ethical, Legal and Political Implications of the New Framework Model

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    Table of Contents

    A Brief Description of the New Framework Model....... 5

    EXECUTIVE Summary.. 6

    Introduction.11

    Part 1 Legal Issues Surrounding the New Frame Work Model

    1.

    International Legal Obligations on States .....12

    1.1.The IHR and the World Health Organisation.12

    1.2 European Union Law....13

    2.0 Human Rights Law.....15

    2.1 Human Rights that Are Applicable In Epidemic Situations May be Of Little Direct Applicability to the New

    Framework Model..15

    2.2 Human Rights Potential Applicable to the New Framework Model.......16

    3. The Importance of Administrative Law in Protecting Individuals from the Actions of Public Bodies .22

    3.1 Limited Control Over Informational Activities Through Administrative Laws22

    4. Data Protection Laws and their Applicability to the New Framework Model..27

    4.1 The European Data Protection Framework27

    4.2 Framework Background.27

    4.3 Data Minimization..28

    4.4 Legitimate Basis For Processing ...29

    4.5 Rights of User Control..32

    4.6 A Potential Right To Be Forgotten32

    4.7 Implications for the New Framework Model.....33

    4.8 Anonymization as An Alternative for the New Framework Model..34

    5.0 Freedom of Information.36

    5.1 Historical Back Ground...36

    5.2 Variations in FOI Its Possibilities and Limitations?..........................................................................................................37

    5.3 Relevance of Freedom of Information Laws to the TELL ME New Framework Model38

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    D3.4 Ethical, Legal and Political Implications of the New Framework Model

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    Part 2

    Ethical and Political Issues Surrounding the New Framework Model

    6. Public Health Communication is Less Focused on the Individual and More on the Collective Risks For

    Individuals and Groups ..42

    6.1 An Ethical Duty to Include Practices of Good Governance Practices Within the New Framework

    Model..43

    7. Issues Surrounding the Use of Non-State Entitles as Integral Components of Public Health

    Messaging.46

    7.1 The Accountability Gap...46

    7.2 Non Alignment of Interests of the Various Parties.47

    7.3 Lack of Fair representation amongst private stake holders.48

    7.4 Poor Levels of Control ....49

    7.5 Hidden or Unknown Ideological Agendas...49

    8. Political Issues Associated with Stakeholder and Community Involvement in the NFM..51

    8.1 The Perception of State Neutrality...51

    8.2 The Relevance of Self Respect and State Neutrality for the New Framework Model...53

    8.3 Engagement of Minorities..53

    8.4 Recognition of Languages..55

    8.5 Recognition Of, and Working With Religious Groups...57

    Bibliography...60

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    D3.4 Ethical, Legal and Political Implications of the New Framework Model

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    A Brief Description of the New Framework Model

    The new communications model was presented in Deliverable 3.1 of the Tell ME Project, entitled New

    Framework Model for outbreak communication. It represents a central aim of the TELL ME project, to

    design a framework model designed for use by public health authorities in the event of an influenza

    pandemic. Its content was based on extensive research carried out in earlier phases of the project into the

    successes and failures of previous strategies used to respond to pandemics and, most notably the H1N1

    pandemic of 2009. Then, despite the best efforts of public health authorities, reduced levels of vaccine

    uptake of different groups across various European countries were observed. The gap between the goals

    and the results of the media campaigns also led to the so-called "boomerang effect, with segments of the

    public expressing distrust in the world health system, which it saw as mired in conflicts of interest (Cohen &

    Carter, 2010). This resulted in the public's noncompliance with the vaccination campaign and a crisis of

    trust between the public and international organizations and governments. Work on this project revealed

    the deficit of theoretical and applied knowledge in the area of risk communication and public inclusion

    through social media.

    In order to address these problems the New Framework Model envisages a different approach

    whereby the public (i.e. the end targets of communicative effort) are placed at the center of efforts, and

    placed in a more dynamic position where they will be able to interact with public health agencies through

    community representativeness and stakeholders. This represents a departure from more traditional andlinear top down models of communication in which the final message was designed by public health

    authorities and distributed to a public that was conceived of as a relatively homogeneous unit. The New

    Framework Model recognizes the existence of a much more homogeneous public in terms of a target

    audience, including members of the medical profession. In addition, through the use of stakeholders and

    community representatives the new framework model foresees a much more dynamic two-way

    communication process where messages are distributed and altered according to feedback, before, during

    and after an epidemic. Such a set-up allows important information to be gathered concerning the efficacy

    of particular communication strategies long before a pandemic would arise. In addition, it would allow

    important lessons to be learned for subsequent pandemics.

    Fig.1 A Representation of the New Framework Model taken From D3.1

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    Executive Summary

    This document aims to highlight prominent legal, ethical and political issues that will surround the use of

    the TELL ME NEW Framework Model (the NFM) which is described above. In doing so it will build upon, and

    incorporate the knowledge and findings already generated in the TELL ME project, in particular deliverable

    T1.6 onHuman Rights, Stigmatization and Risk of Discrimination Against Specific Population Segments and

    Target Groups (Deliverable 1.6). The aim will be to apply the knowledge already generated in the first part

    of the project to the NFM, which has been developed since. The aim of the NFM was to develop a new

    model for pandemic communication that was less focused on a hierarchical and linear approach, as has

    been common in the past, and more focused on the mediation of the message and the dichotomy between

    sender and addressee as being of central importance (see Deliverable 3.2). In doing so, a primary focus of

    the NFM was to foster a high level of public and stakeholder engagement in each of the planning, the

    pandemic and the post pandemic phases. This would involve a shift away from traditional top down models

    towards a model that focused on the engagement of various groups of stakeholders, each of which

    interacts with the public in its own manner. The NFM, unlike previous models, is accordingly not based on a

    hierarchic, linear structure and incorporates the active participation of a range of non-public health bodies

    that are ca

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