Public Consultation and Ethics

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Public Consultation and Ethics

• Learning to hear the music
• Michael M. Burgess, Ph.D.
• W. Maurice Young Centre for Applied Ethics, UBC,
  Vancouver, Canada

Technologies, Publics and Power. Akaroa, NZ. Feb
5, 2004
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What counts as ethical?

• We have been made outsiders in our own world!
• What would our ancestors have said about this
  technology?
• Indigenous peoples are rights holders, not stake
  holders!
• How can deontological questions be given a place
  in the debates?
• What is the underlying concept of citizenship?
• How to live with the uncertainty of unintended
  consequences?

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What counts as ethical?

• Ethical approaches diverse and non-authoritative
• Enlightenment influence elitist, yet promotes
  reason over authority
• Persistent moral questions and remainder

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Outline

• Evaluating the role of ethics
• Representation in ethics and policy
• Transparency and accountability for political
  commitments, objectives and ethical assessments
• Redistributive and retributive justice
• Public dialogue/dispute as ethics
• Persistent moral quandaries and moral remainder
• Policy amidst controversy
• Governance outside of policy

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The Role of Meaning

• Case narrative
• understanding different perspectives
• in the context of a pressing decision
• agreement without moral compromise
• institutional context restrictive
• Lived meaning of inherited risk
• Components of meaning not easily represented in
  clinical setting
• Policy What to include under health care
  insurance
• Not all accounts present
• Not all accounts of meaning supportable
• Definition of health culturally based

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W. Maurice Young Centre for Applied Ethics
Modelling Ethics and Technology

• Genetics and Ethics
• Research Ethics

Deliberative Democracy
Moral Experiences ofGenetic Risk How do moral
experiences of inherited risk identify ethical
dimensions of genetic testing and technology?
Democracy, Ethics and Genomics What is a fair way
to involve lay and expert participation in the
governance of genomics?
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Democracy, Ethics and GenomicsConsultation,
Deliberation and Modelling

• How much ethical weight should be given to public
  opinion in genomic governance?
• How do we determine when a policy is fair and
  promotes public trust?

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Democracy, Ethics and GenomicsConsultation,
Deliberation and Modelling

• gels.ethics.ubc.ca/
• Principal Investigator
• Dr Michael Burgess, University of British
  Columbia
• Co-investigators and Collaborations
• Conrad Brunk, Susan M. Cox, Peter Danielson,
  Willie Davidson, Avigail Eisenberg, Brewster
  Kneen, Ben Koop, Michael McDonald, Wayne Norman
• Researchers in Canada, the United States, the
  United Kingdom, Norway, Australia, and New
  Zealand

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Policy Consultation Framing

• What is the range of interests relevant to
  genomics?
• How can identification of these interests direct
  issue selection and scope?

• Method
• Who?
• How involve?
• How assess interests?

• Interests
• publics
• researchers
• industry
• regulators

Issues Scope reflects diverse interests
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Scoping Focus Groups

• Respect of expertise
• Genome Research Areas
• Hopes, anticipated benefits
• Concerns

Segment 1 Random No interest
Segment 2 Random Interest
Rural 12 Random
Segment 2 NGO
Segment 3 Direct Interest
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Issues and Approaches
http//gels.ethics.ubc.ca/
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Broad Scope

• Ethical issues must have a wide scope
• Inevitable application of genome research, rather
  than narrowly defined basic research
• social, economic and political issues related to
  genomics

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Topics for further research

• Under what circumstances, if ever, it would be
  appropriate to use genetically modified salmon in
  salmon aquaculture?
• What are appropriate policies for collecting
  health records and genetic materials into large
  biobanks, and for their use in research?
• How should the public be involved in governing
  these activities?

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Ethics Experiments

• Consultative or representational ethics
• Consultations to define interests, identify new
  perspectives and clarify important issues
• 2. Deliberative Democracy
• Assessing the issues and interests will define
  how to involve civil society in designing policy
• 3. Modeling
• Computer modeling of the consequences of
  governance choices will influence ethical choices.

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Consultative Ethics Stream

• Hopes
• Concerns
• Role of public in governance

NGOs
Random No interest
Researchers Funders
Regulators Academics
Preformed Groups
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Consultation Ethical Analysis

• Articulate the full range of interests
• Provide accounts of perspectives that
  support/critique alternative views.
• Suggest tentative policy where appropriate or
  pressing (explain why urgent).
• Identify persistent moral issues and
  institutional pressures to silence dialogue.

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Competition?
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Final Steps
Accountability Public Consultation
International Peer Review
Comparative Meta-analysis
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Evaluate

• Transparency
• Are interests or perspectives of participants
  articulated respectfully and informatively?
• Does the ethical analysis clarify where the
  disagreements or controversies are and the
  possible basis for disagreement?
• Are points of convergence fairly represented?
• Is the basis for legitimacy of recommendations
  explicit and fair?

• Accountability
• Are treaty and civil rights fully considered?
• Are current and alternative lines of
  accountability for interests clearly identified?
• Is challenge or clarification of ethical analysis
  readily accessible?
• Are unintended consequences evaluated?

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Outline

• Evaluating the role of ethics
• Representation in ethics
• Transparency and accountability for political
  commitments, objectives and ethical assessments
• Redistributive and retributive justice
• Public dialogue/dispute as ethics
• Persistent moral quandaries and moral remainder
• Policy amidst controversy
• Governance outside of policy

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Critiques

• Bioethics tends to assume the culture of science
  and technology.
• Debates about consequences are referred back to
  science and risk assessment
• Deontological questions become matters of
  conscience for individuals and communities.

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Pressures for premature closure

• Cult of expertise
• Presumed, non-negotiated definitions of
  rationality
• Ethics as facilitator of science and technology
  Innovation agenda

• Influence of drivers on ethics
• Institutionalization/ bureacratization of ethics
  as panacea
• Over-emphasis on policy as outcome

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Policy or Governance?

• Use of power to structure and direct economic,
  political and social activities
• Policy and jurisprudence
• Directed government funding
• Marketing and media
• NGOs and other public interest groups
• Consumer action (organized or individual)
• Citizen action (voting, letter writing, media)
• Adapted from Perri 6. (2003). The Governance of
  Technology.
• Tansey, James (2003). The prospects for
  governing biotechnology in Canada.

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Non-policy governance

• GE salmon in New Zealand
• GE Wheat in US and Canada
• Regulatory approval given or likely, but
  consumer, citizen and producer responses strongly
  opposed

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What is good ethical dialogue?

• Assess and ameliorate problems of access to
  dialogue (Buchanan et al, 2001)
• Identify uses of power to structure economic,
  political and social activities
• Create ethics platforms or culture supportive
  of competence and fairness (Gaskell et al, 2003)
• Produce opportunities for civic dialogue/debate
• Consultation includes fairness of ethical
  processes, definitions and opportunities to revise

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Wheres the music?

• In the open challenges to the intertwining of
  science and industry
• In the articulation and understanding of the
  meaningful accounts of what is important or why a
  practice does not fit a perspective or culture
• In the opportunity to use biotech debates to ask
  what kind of a society we want to be
• In enrichment from engaged pluralism

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Justice?

• (Re)distributive
• What is a fair distribution of power, resources,
  benefits and harms?
• How can we improve without causing increased
  injustices?

• Retributive
• What is owed for past wrongs or injustice?
• How can the burdens of retributive justice be
  fairly distributed?