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
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?
What counts as ethical?
• Ethical approaches diverse and nonauthoritative
• Enlightenment influence elitist, yet
promotes reason over authority
• Persistent moral questions and remainder
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
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
W. Maurice Young Centre for Applied Ethics
•Genetics and Ethics
Modelling Ethics
•Research Ethics
and Technology
Deliberative Democracy
Moral Experiences of
Genetic Risk
Democracy, Ethics and
Genomics
How do moral experiences of
inherited risk identify ethical
dimensions of genetic testing
and technology?
What is a fair way to involve
lay and expert participation
in the governance of
genomics?
Democracy, Ethics and
Genomics
Consultation, 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?
Democracy, Ethics and Genomics:
Consultation, 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
Policy Consultation Framing
What is the range of interests relevant to
genomics?
Interests:
•publics
•researchers
•industry
•regulators
Issues:
Method:
Scope
reflects
diverse
interests
•Who?
•How involve?
•How assess
interests?
How can identification of these interests
direct issue selection and scope?
Scoping Focus Groups
Segment 1
Random No
interest
Segment 2
Random
Interest
Respect of expertise:
• Genome Research
Areas
• Hopes, anticipated
benefits
• Concerns
Rural 1&2
Random
Segment 2
NGO
Segment 3
Direct
Interest
Issues and Approaches
http://gels.ethics.ubc.ca/
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
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?
Ethics Experiments
1. 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.
Consultative Ethics Stream
• Hopes
• Concerns
NGOs
Random
No interest
Researchers
Funders
Regulators
Academics
Preformed
Groups
• Role of public in
governance
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.
Competition?
Final Steps
Accountability
Public Consultation
International
“Peer” Review
Comparative
Meta-analysis
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?
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
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.
Pressures for premature closure
• Cult of expertise
• Presumed, nonnegotiated 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
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.”
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
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
Where’s 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