1. 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

2. 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?

3. What counts as ethical? Ethical approaches diverse and non- authoritative Enlightenment influence elitist, yet promotes reason over authority Persistent moral questions and remainder

4. 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

5. 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

7. W. Maurice Young Centre for Applied Ethics Genetics and Ethics Research Ethics Moral Experiences of Genetic 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

8. 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

10. 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

11. 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?

12. Segment 1 Random No interest Rural 1&2 Random Segment 2 Random Interest Segment 3 Direct Interest Segment 2 NGO Scoping Focus Groups Respect of expertise: Genome Research Areas Hopes, anticipated benefits Concerns

13. Issues and Approaches http://gels.ethics.ubc.ca/

14. 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

15. 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?

16. 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.

17. NGOs Random No interest Researchers Funders Preformed Groups Regulators Academics Consultative Ethics Stream Hopes Concerns Role of public in governance

18. 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.

19. Competition?

20. Final Steps Comparative Meta-analysis International “Peer” Review Accountability Public Consultation

21. 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?

22. 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

23. 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.

24. 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

25. 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.”The prospects for governing biotechnology in Canada.

26. 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

27. 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

28. 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

30. 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?