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 non-authoritative
• 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
•Research Ethics
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?
Modelling Ethics
and Technology
Deliberative Democracy
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 GenomicsConsultation, Deliberation and Modelling
Democracy, Ethics and Genomics:
Consultation, Deliberation and Modellinggels.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?
How can identification of these interests direct issue selection and scope?
Interests:•publics
•researchers•industry
•regulators
Issues:
Scope reflects diverse
interests
Method:
•Who?•How involve?•How assess
interests?
Segment 1 Random No
interest
Rural 1&2 Random
Segment 2 Random Interest
Segment 3 Direct
Interest
Segment 2 NGO
Scoping Focus GroupsRespect of expertise:
•Genome Research Areas
•Hopes, anticipated benefits
•Concerns
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 Experiments1. Consultative or representational ethics
Consultations to define interests, identify new perspectives and clarify important issues
2. Deliberative DemocracyAssessing the issues and interests will define how
to involve civil society in designing policy
3. ModelingComputer modeling of the consequences of
governance choices will influence ethical choices.
NGOs Random No interest
ResearchersFunders
PreformedGroups
RegulatorsAcademics
Consultative Ethics Stream
•Hopes
•Concerns
•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.
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, 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
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