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

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 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.

Competition?

Final Steps

Comparative Meta-analysis

International “Peer” Review

AccountabilityPublic Consultation

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