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Deliberative Legitimacy and the Governance of Biobanks

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What Is Big Picture Bioethics? ... Ethical disagreement, 'bioethics policy' and the demands of democracy. Bioethics policy as a challenge to general theories ... – PowerPoint PPT presentation

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Title: Deliberative Legitimacy and the Governance of Biobanks


1
Deliberative Legitimacy and the Governance of
Biobanks
  • Susan Dodds
  • University of Wollongong
  • Rachel A Ankeny
  • Universtiy of Adelaide

2
Outline of Paper
  • What is Big Picture Bioethics?
  • Legitimacy on bioethics policy in pluralistic
    democracies
  • Roles of public participation
  • Forms of public engagement
  • Democratic deliberation and justification
  • Biobanks, issues raised
  • Privacy, consent, governance, trust
  • Conclusion Deliberation towards the best policy
    justification

3
What Is Big Picture Bioethics?
  • Focuses on novel approaches to the
    ethical/political analysis of health
    policy-making
  • Integrates diverse disciplinary perspectives,
    resulting in new bioethics methodologies
  • Comparative analyses of policy-making processes
    and content (Australia and Canada)
  • Co-investigators Susan Dodds (University of
    Wollongong), Rachel Ankeny (University of
    Adelaide), Françoise Baylis and Jocelyn Downie
    (Dalhousie University)

4
Key Features of Big Picture Bioethics
  • Exploration of the justification of policy
    processes that lead to regulation (or decisions
    not to regulate)
  • Investigation of the conditions that contribute
    to the legitimacy of policy
  • Sensitivity to the social and political context
    of policy debates
  • Ethical focus on process, not just outcomes

5
Aim a normative political philosophical approach
to public policy-making
  • Desiderata
  • Determinate (if not definitive) policy outcome
  • Public justifiability of policy
  • Recognition of the fact of ethical disagreement
  • Relative legitimacy
  • Process viewed as open to concerns of all those
    affected
  • Those affected and policy makers are able to
    articulate why the policy is thought to be
    justified

6
Ethical disagreement, bioethics policy and the
demands of democracy
  • Bioethics policy as a challenge to general
    theories of legitimacy of state institutions
  • Not addressing structural legitimacy, but
    legitimacy of specific policy on contested
    issues
  • which humans are protected by the state
    distribution and use of public resources control
    over information relating to individuals
    determining whether or not an entity is one that
    the state will treat as having moral
    significance, etc
  • Source of government or regulatory interest
    defended by reference to
  • the states role as provider of welfare services,
  • as protector of citizens individual rights,
  • as defender of a common way or shared set of
    values.

7
What Makes Policy Legitimate?
  • Legitimacy is grounded in the processes of
    decision-making including
  • Recognised formal process (formal legitimacy)
  • Determining who is affected and what is actually
    at stake for them, based on their input not just
    relying on experts (participatory legitimacy)
  • Articulating and testing claims directed toward a
    common end (deliberative legitimacy)
  • Active participation by affected publics engaging
    in deliberative process towards common end
    accurate record of process and outcome (internal
    legitimacy)
  • Developing a policy recommendation which is
    justified by appeal to previous processes
    particularly deliberative input (justificatory
    legitimacy)

8
Participation
  • Role of participation in establishing legitimacy
    of policy is to avoid pre-judging policy
    processes and outcomes in areas where
  • We dont know enough about who is affected
  • We arent clear about the values that they hold
  • Nor do we know how their values may be affected
    by various scientific and other developments
  • Process of participation should allow genuine
    inclusion and contribution by all those who may
    be affected

9
Head, B. W. (2007) Community Engagement
Participation on WhoseTerms? AJPS 42 (3) 441-454
445.
10
Deliberation and its Constraints
  • Deliberative approaches emphasise the
    legitimation of policy that comes from the
    transformation of interests through processes of
  • …collective decision making by all those who
    will be affected by the decision or their
    representatives this is the democratic part.
    Also…it includes decision making by means of
    arguments offered by and to participants who are
    committed to the values of rationality and
    impartiality this is the deliberative part.
    (Elster, 1998, 8)

11
Ideal Deliberative Democracy
  • Processes of deliberation take place in
    argumentative form, that is, through the
    regulated exchange of information and reasons
    among parties who introduce and critically test
    proposals.
  • Deliberations are inclusive and public…All of
    those who are possibly affected by the decisions
    have equal chances to enter and take part.
  • Deliberations are free of any external coercion…
  • Deliberations are free of any internal coercion
    that could detract from the equality of the
    participants. Each has an equal opportunity to be
    heard, to introduce topics, to make
    contributions, to suggest and criticize
    proposals…. (Habermas)

12
Constraints on Deliberation
  • We arent in ideal speech situations
  • None of us are perfectly rational
  • Significant ethical, political, and social
    disagreements exist
  • We arent skilled in the culture of deliberation
    and public reasoning

13
Justificatory Liberalism
  • Duty to explain to one another.. how the
    principles and policies they advocate and vote
    for can be supported by the political values of
    public reason (Rawls)
  • The moral lodestar of liberalism is… the project
    of public justification. Macedo
  • To respect another person as an end is to insist
    that coercive or political principles be just as
    justifiable to that person as they are to us.
    Equal respect involves treating all persons, to
    which such principles are to apply in this way
    (Larmore)

14
Attributes of More Legitimate Policy Processes
  • Direct input to find out what matters to the
    people affected by policy
  • Promoting public understanding of science
  • Inclusive engagement (attention to systematic
    disadvantage)
  • Ensuring discursive participation (fora for
    engagement)
  • Fostering conditions for respectful deliberation
    and public trust in process
  • Providing reasons for policy decisions
    (contestable justification)
  • Review over time to capture changes in values,
    etc.

15
Contested deliberation where legitimacy not
realised?
  • Some ethically contentious issues where the
    development of policy that meets a threshold
    level of legitimacy is impossible
  • Discursive modus vivendi agreements (Ivison)
  • discursive because they emerge from the
    constellation of discourses and registers present
    in the public sphere at any given time, and
    subject to at least some kind of reflexive
    control by competent actors and modus vivendi
    because they are always provisional, open to
    contestation and by definition incompletely
    theorized (Ivison)

16
Biobanks Linked biological samples and/or health
records from a large epidemiological cohort
  • Biological samples
  • Pathology samples collected for clinical purposes
  • Samples collected for routine screening
  • Samples donated for research
  • Donation on death
  • Health data
  • Genetic records pedigree, family medical history
  • Environmental exposure
  • Medical history including linking of records
    across services
  • Concurrent medical records
  • Research records
  • Bioinformatics data linkage
  • Complex data comparisons make vast array of data
    useable for analysis, research
  • Comparisons among data sets, samples
  • Tracking across time, groups
  • Biobanks may be
  • Retrospective
  • Prospective
  • Both

17
  • Prospective Biobank
  • UK Biobank www.ukbiobank.ac.uk
  • Recruiting adult volunteers to donate samples and
    consent to future use, recontacted into future,
    no personal feedback
  • UK Biobank will gather, store and protect a
    vast bank of medical data and material that will
    allow researchers to study in depth, in decades
    to come, how the complex interplay of genes,
    lifestyle and environment affects our risk of
    disease. It is the first time that such a
    project has been attempted in such fine detail on
    such a vast scale
  • Retrospective Menzies Research Centre, Tasmania
  • Clusters of families with genetic conditions,
    extensive family tree based on public record
    and connected with pathology samples, genetic
    pedigree retrospective--gtprospective

18
Why link deliberative democracy and biobanks?
  • Public health system-- public good
  • Records/ samples
  • Citizens reliance on state to protect/control
    access to health information
  • Social interest in responsible use of health
    data/ development of evidence based health
    policy
  • Individual and collective impact of use/misuse
  • Access to resources and profits
  • Biobanks as re-shaping the scope of the public
    and nature of public goods

19
Potential concerns and possibilities in the
governance of Biobanks
  • Public trust (Stranger et al 2005)/ Public Gene
    Angst (Bovenberg 2005)
  • Citizens value medical research, fear risk of
    loss of privacy, control discrimination
  • Confidence, trust in institutions charged with
    protecting use of information
  • Relational approach to consent (Lippworth el al
    2006)
  • Community involvement in deciding research
    priorities, administration of banks
  • Benefit sharing/ commodification (Dickenson 2004)
  • Questioning assumption that research benefits
    will be shared equitably
  • Exploring the implications of human genetic
    information, tissues, cell lines becoming market
    commodities
  • Creation of biocapital (Sunder Rajan, 2006)
  • Recognition of the symbiotic development of
    technological capacity and markets for
    biotechnology
  • Public participation in shaping policy (Stranger
    et al 2005) / ethicality (Scott et al 2005)
  • Citizen participation as developing confidence in
    the process
  • Community input in articulating the symbolic and
    cultural significance of policy/practice

20
Deliberation and the governance of biobanks
  • Deliberative democratic approach policy based on
    argument and reason citizens able to participate
    in the deliberation
  • Expert input is important, but contestable and
    not definitive
  • Regulators can draw on actual rather than
    presumed public responses
  • Hard decisions are open to argument
  • Citizens provide direct input
  • Regulators, oversight bodies need to be
    responsive to deliberative input

21
Big-Picture Bioethics Policy-Making and Liberal
Democracy
  • For further information
  • ARC Discovery Project Big Picture Bioethics
    website
  • www.uow.edu.au/arts/research/bigpicturebioethics
  • sdodds_at_uow.edu.au
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