Public Consultation in Ethics An experiment in representative ethics

Michael M. Burgess PhD Professor and Chair in Biomedical Ethics W. Maurice Young Centre for Appfied Ethics and The Department of Medical Genetics, University of British Columbia

Abstract Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse set of moral experiences. Consultation must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groups tend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of a consultation. Similarly, a heavy policy focus and pressures to commercialize products risk oversimpl~cation of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues.

Keywords Biotechnology, ethics, genomics, public consultation.

Bioethics and Public Policy Consultation in Research and Clinical Ethics The role of public consultation in ethics and public policy can be approached from several starting points. In this case, the approach is from the field ofbioethics, specifically from clinical and research ethics.

A growing number of health care institutions use c o n s u l t a t i o n as a tool to reso lve conce rns abou t involvement in controversial decisions (e.g. initiating or

prolonging controversial therapies). This use of consultation is an attempt to describe the various perspectives of the interested parties (e.g. health professionals, patients and fami l ies ) in su f f i c i en t dep th to enab le a sh a r ed understanding and clear ethical analysis. A satisfactory resolution requires the parties to support an agreed on action, it does not require them to change their moral perspective.

For example, parents may sometimes insist on what appears to health professionals to be an ineffective, unproven or unsafe treatment of their child. The health professionals may believe that the benefit of the treatment

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cannot be realized in the child's clinical situation, or that adminis ter ing the t rea tment will cause unnecessary discomfort or suffering. Consensus models of the clinical ethics consultation process (1-5) asks parents to help the health professionals to understand their hopes for their child, and encourages them to understand the health professionals ' concerns about the treatment incurring unjustified risk or harm.

While this approach might sometimes reveal and clarify parents' unrealistic expectations, it often provides a detailed account of the parents' hope for the child, thereby enabling the health professionals to find ways of supporting them and their child. In some cases the parents' struggle to articulate their hopes may actually indicate an important milestone (e.g. a birthday), or their own need for more time to come to terms with their child's prognosis. Understanding these practical and emotional dimensions may be sufficient reason for the health professionals to find continuing (or initiating) a treatment for a further period of time acceptable. Similarly, understanding the concerns of the health professionals, particularly when expressed in relationship to the well-being of the individual (their child), may ease the parents' concern over limiting or withholding treatment.

This resolution does not require the health professionals to change their view about appropriate standards of care, or for parents to fully articulate reasons for their position, or even to have a reason. It does require a shared unders tanding of what is meaningful - the parents ' emotional and social needs, the various senses of what constitutes harm and benefit, the various responsibilities for the child's welfare - and how respecting what is meaningful requires health professionals to reach a practical compromise. In this richer context, health professionals and parents co-create a shared understanding about how best to work under the constraints of the situation.

Autonomy and Policy Decisions in the Public Interest Ethical practice in clinical and research ethics depends heavily on notions of autonomy and the promotion of pa t ien ts ' or research par t i c ipan ts ' best interest: an individual's decisions are not evaluated for rationality unless there are strong independent grounds to suspect incompetence to understand or assess relevant information. This focus on autonomy and patient best interest creates considerable latitude for individual expression of what is

meaningful as a basis for deciding acceptable clinical care. The practical direction of the case arises from the notion of the authority of individuals to control what happens to them, and on the expertise of health professionals to predict the effects of disease and treatments, i

That said, policy decisions governing what options are available to health care providers and patients ultimately presume some perspective on what is in the interest of the 'public', including, in the case of health services, a view on how to fairly distribute resources given the constraints of (ultimately) limited funding. Just or fair policy decisions are based not on balancing of benefit with individual autonomy but against the justice of alternative distributions. Policies may state that a health care service may justifiably not be available for clinical use because it is unsafe, of inadequate benefit, other services are more cost-effective, or if providing it would require too great a sacrifice of other important social opportunities. The effects of these policies on the clinical care and social opportunities of individuals are considerable, and are often experienced as unfair. For example if a condition happens to be one for which there is no validated treatment, clinicians, patients and families may question whether the lack of validated treatment justifies refusing to provide non-va l ida ted , or exper imenta l treatments. This questioning raises a fundamental challenge to policy decision-making in the public interest: Since public policy in health and all other areas is inevitably justified in terms of the public interest, what is the relevance of personal experiences of injustice to fair policy?

Perhaps personal accounts of meaning have no bearing on justifying public policy, and elected representatives and public employees have a legitimate authority to consult experts and set policy in the public interest. Clearly, this has effectively been the role of many ethics experts who since the 1970s have replaced orjoinecl science experts as primary spokespersons and advisors on social and ethical issues to those with policy-making authority.(6, 7:97) In fact, national commissions, ethics councils and research ethics committees often represent ethics as an area of expertise that can be combined with other forms of expert knowledge to produce authoritative recommendations. Ethical issues concerned with public welfare do not have recourse to individual autonomy, yet a common theme is the legitimacy of decision-makers (often supported by the presence of ethics experts) and their policies in relation to the 'public interest'.

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Experts and Policy Decisions in the Public Interest The expert-driven approach to ethics, like that found in risk assessment and science, neglects the fact that ethical analysis of practical and policy matters is far from a univocal or uncontroversial practice. Even in the narrowly- defined cases typical of clinical ethics, ethical analysis usually identifies several morally permissible but often tragic choices from among the options provided by experts.

One response in the area of clinical services to the expert approach to policy development in the public interest has been to insist on improving public involvement over patient and consumer choice and electoral politics. Daniels and Sabin (8) h a v e a rgued tha t ' a c c o u n t a b i l i t y for reasonableness ' is a s tandard that can establish the legitimacy of policies that limit clinical services. They argue for the legitimacy of health care restricting decisions made by for-profit and not-for-profit companies provided that society's interest in fair distribution is assured through publicly transparent and accountable justifications: the legitimacy of health insurance inclusions and exclusions cannot be established without accounts that enable the public to understand and challenge the reasonableness of such decisions.(8)

Although the environmental risk assessment literature is still dominated by the scientific evaluation of risk, there has been over 30 years research into the social dimensions of risk and its relevance to risk assessment.(9, cf. 10-13) Environmental risk assessment has evolved to include publ ic i n v o l v e m e n t in de t e rmin ing social risks of technologies.(14) However, here as in other areas the quantifiable measures of probabilities and magnitudes of risks are insufficient to identify what risks are important and experts' analyses are often used in policy with little regard to the fact that the measurable or quantifiable risks identified by experts are often the most important simply because these are the ones experts can best characterize.

There is no such thing as an objective characterization of risk. All risk characterizations and all analysis are subjective and value-laden, including lay and expert views. When technical specialists call for a more 'objective' characterization of risk, they are simply asking for a greater role ... (S)electing what risks are important, and why, are not solely technical judgements. (15: 132)

Environmental policy and risk assessment has a long

history of trying to involve the public, stimulating debates about the extent to which non-experts in technical areas have policy-relevant competencies, or whether they can be informed through expert analyses wi thout being influenced by the values inherent in the experts' technical assessments and methods. Any assessment of risks or benefits must decide which risks are important, not merely provide information about the risks for which some method of assessment exists.(cf. 16)

Representativeness in Ethical Analysis A number of ethics commentators have called for public consultation, or at least accountability related to health care insurance (8, 17), perhaps supporting broader calls to democratize science and policy.(cf. 18, 19-23) While these calls for consultation may seem reasonable measures in this age of democratization and post-colonial analysis, it is important to try to understand how public consultation can enhance ethical analysis related to public policy and public interest.

Justice theorists working in the area of health care and genetics have recently emphasized a more inclusive approach to appraising fairness and establishing the l eg i t imacy of decisions and dec is ion-makers . Alan Buchanan, Dan Brock, Norman Daniels and Dan Wikler have argued in their book on genetics and justice that whether there is equal access to the 'cooperative framework' (which could be understood as access to information, the electoral system, or influence on policy and markets) is a neglected and logically prior question to determining what constitutes fair distribution.(24: 263) These justice theorists emphasize a broad inclusiveness in the range of people or interests included in their accounts.

Buchanan and colleagues consider claims from diverse perspectives for their implications on whether justice requires restrictions on genetic testing and research. As they imply, bioethics has benefited from the contributions of ethnographers, feminists, cultural scholars, and disability activists whose work reveals ethical analyses as sometimes too dependent on, for example, the authority of health care experts and a model of agency that is too individualist or rationalist. In the area of health care, Daniels and Sabin point out that an important feature of a dispute resolution mechanism to settle challenges to decisions is that it 'engages a broader segment of those affected by the decision in the process of deliberation'.(8:340)

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The focus on who p a r t i c i p a t e s in c o o p e r a t i v e frameworks emphasizes participation in determining how decisions are made. Although this includes directing experts to evaluate broader notions of benefits identified by others (possibly also experts), it also raises the possibility of conceptual clarification or refraining of analysis.

To illustrate the difference, consider the clinical case described earlier. The agreement of health professionals to continue a non-validated treatment of the child might be because they, as experts, have agreed that:

�9 the parents' emotional distress is relevant to the practical decision;

�9 benef i t s to the parents are included wi th in the professional responsibilities for care of the entire family; or, even more ambitiously,

�9 supporting spiritual and emotional 'work' done during the additional days gained through continued treatments are also l e g i t i m a t e r e s p o n s i b i l i t i e s o f h e a l t h professionals.

Different perspectives or accounts of meaning enhance conceptions of harm, benefit and agency (cross-cultural approaches to health care ethics emphasize this point (25, 26: 79-86)). While representing diverse interests in ethical analysis leads to a more robust and evolving notion of respons ib i l i ty in clinical care, cons ider ing diverse perspectives on what consti tutes public interest will similarly enhance ethical analysis of policy.

Consultation and Genomics

There is a difference between health policy and policy related to genomics (and biotechnology) that strengthens the need for public consultation in the latter case. As Daniels and Sabin have succinctly stated for policy related to health care restriction or allocation, the public interest is in maximum benefit from supported health care services for a population with diverse needs, since 'we cannot meet all legi t imate needs with l imited resources and rapidly improving technologies'.(8:312) While 'maximum health benefit ' is a vague notion of interest that is open to interpretation, it does establish a criterion according to which some distributions could be assessed as consistent or inconsistent with public interest in access to health care serv ices . However , in the area of g e n o m i c s and biotechnology, there is no common agreement on the nature of the public interest to be served.

Al though Daniels and Sabin 's not ions of public t ransparency and accountabi l i ty of decisions remain important, access to policy debates about how public interest is framed before decisions are made is essential. However, representing diverse perspectives to enhance the notion of public interest that informs how issues are defined is not the same as demographic representation. Instead, the point is to understand as yet underrepresented or unarticulated perspectives, not to assign frequencies to well articulated perspectives. This form of representation in ethics requires substantive engagement with the values and meanings that may not readily be represented in the market or dominant culture, or in many approaches to public consultation or education. Important clarification may come from perspectives that are widespread in a population but unarticulated in polemical discourse.

The emphasis on representativeness is not on the size of the group who hold the view, but on whether ethical analysis is adequately inclusive, or does it fail to consider perspect ives that are present in the popula t ion but marginalized or misunderstood. Despite the tradition of considering all logically possible alternatives, critiques of narrow analysis of ethical issues have made it clear that it is necessary to engage in empirical study and dialogue to identify novel and ethically relevant perspectives.(28-30) Given unequal access to policy debates and other forms of the 'collaborative framework', a central problem is how to adequately represent the full diversity of views in ethical issue definition and analysis.

The need to publicly .justify a position or belief is a significant inhibitor, particularly for social research to identify perspectives on issues that might be unique or different from dominant discourse. Two demands for public consu l t a t i on in tended to genera te d ive rs i ty arise. Recruitment must support the involvement of people not typically engaged in the debates related to the policy issue, and the s t ructure of the consu l t a t ion must permit p articip ants to p articipate without requiring a justification that inhibits free disclosure, ii By focusing on the notion of interests as perceptions of entitlements and emphasizing that both hopes and concerns are to be described, participants are encouraged to state their views openly. Ethical analysis will still need to evaluate the interests, but it will be based on a more robust notion of the range of public interests held by diverse people.

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An Experiment in Representative Ethics This paper now describes an experiment on how to increase the representativeness of ethical analysis in the area of genomics in particular and biotechnology in general.

The project objectives were characterized as follows: �9 How much ethical weight should be given to public

opinion in genomic governance? �9 How do we determine when a policy is fair and promotes

public trust? Although for purposes of comparison the project initially

described three different approaches to ethical analysis, the specific examples to be used were not selected because to do so prior to the initial consultation would prematurely narrow the range of interests and scope of public to be involved.

The definition of a policy or ethical issue typically sets the scope of what range of interests are to be considered, thereby excluding some interests as beyond the scope of analysis . One example is the focus on safe ty that character izes much of the pol icy debate related to biotechnology. On the assumption that only compelling risk to the public interest can restrict commercial or private enterprise and researcher freedom, regulators seek to assess whether particular technologies pose serious risk to human or environmental safety using existing assessment models. Framing the issue as a question of safety places the burden of proof on jus t i fying any restriction of research or technological application. This sets the scope of the inquiry to exclude concerns related to the effects of biotechnological approaches on the political economy of agriculture, the further concentration of wealth and the influence of a consumer-based definition of benefits on the common good and future generations.

The initial consultation in this experiment consisted of 11 focus groups convened to identify the range of interests relevant to genomics. The 'public' was defined as inclusive of those who did not self-identify as having any 'interest' in genetics or genomics, those who did, non-governmental groups who spoke on behalf of public interests, researchers, funders and regulators of genomic research. The first two populations were recruited to focus groups through random digit-dialling and an offer of $50, while the direct-interest groups were recruited through contacts and by referral (see Burgess 31).

Many approaches to public consultations attempt to avoid the 'deficit model', which presumes that non-expert

participants must be educated before they can provide relevant commentary. This project attempted to minimize the influence of the deficit model by defining the topics to be discussed as respecting participants' expertise as citizens- members of the public with interests in the kind of society they wished to live in and the role of genomics in it. Participants in the 11 focus groups were asked to (1) describe briefly the scope of research into the entire genome of living things, (2) identify their hopes for genome research in these areas, and (3) identify their concerns.

In addit ion, par t ic ipants were d iscouraged f rom engaging in evaluating the importance of each item, or f rom pursu ing ' concerns ' before 'hopes ' were ful ly identified. The goal was to prevent a discussion of concerns from inhibiting the identification of hopes, iii Participants were told that while the product of the project might help with involving the public in the future policy development, the focus groups were only intended to provide material to help select the issues and scope for the research project.

A document describing the analysis of the focus groups and proposed issues and scope was posted on a private website. Thirty-five interdisciplinary Canadian scholars and colleagues from the United Kingdom, New Zealand, Australia and the United States reviewed the document and wrote critiques; 28 of these convened for a four-day meeting to discuss the analysis.

One conclusion of the analysis was that the role of the public in governing genomics was itself an important topic to be evaluated. Concerns about the impracticality of national policies in a globalized market and research community, and the dominance of commercial or other interests in developing policy, strongly supported evaluating the role of the consumer and other social movements in governing genomics where policy might be ineffective.(31)

Through the course of the analysis, DNA-sampling or biobanking, and salmon genomics were selected as topic areas. While these same topics might have been selected without the focus groups, the range of interests identified helped justify the scope, which included the development of genetic tests and access to personal information for biobanks and the use of genomic research related to aquaculture for salmon genomics. Although very different f rom academic approaches that of ten reduce issue definitions to manageable topics, this approach to the problems associated with genomic policy and governance emphasizes including diverse perspect ives on what

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constitutes the public interest. Since biobanking in various forms is already occurring

in several jurisdictions, and genetically modified salmon in aquaculture has yet to occur, the structure of the issues for further research are not parallel: �9 Under what c i rcumstances , if ever, would it be

appropriate to use genetically modified salmon in salmon aquaculture?

�9 What are appropriate policies for collecting health records and genetic materials into large biobanks, and for their use in research?

In each issue, a subsidiary question is: �9 How should the public be involved in governing these

activities? The range of interests identified in the focus groups is

important for consideration in subsequent ethical analysis of the issues. For example, the following perspectives were among the ones that seemed particularly important to consider: �9 indigenous peoples' interests; �9 people with disabilities; �9 disinterested or uninvolved public; and �9 groups with clear or direct interests, including funders,

researchers, environmental groups, and disease-based charities. This representation of the diverse interests and the

formation of the issues based on the public consultation will inform the subsequent ethical analyses and further public consultation. The ethical analyses will later be evaluated by interdisciplinary peers and through public consultation for whether it fairly represents the range of relevant interests.

But will comparing different ethical approaches and evaluating them from expert and public perspectives provide be t te r pol icy or reduce confl ic t re lated to b io technology policy? These may not be reasonable expec t a t i ons , or at leas t not the on ly r ea sonab l e expectations of ethical analysis. Like science, technology assessment and risk assessment, ethical analysis can inform, but not determine the best social policies. While ethical analyses might make policies more robust in their design, tha t r o b u s t n e s s is more l ike ly to resul t f rom an understanding of the full complexity of the issues and the creation of social institutions that can support ongoing ethical debate about the kind of society we wish to live in and the role of technologies in such a society.

The remainder of this paper describes how ethical analysis, particularly representative ethics, can support public consultation, dialogue and public policy.

The Role of Ethics in Public Consultation and Policy A move to establish mechanisms to sustain moral dialogue in the areas of human genomics and biotechnology is reflected in the official recommendat ions of several inquiries, iv Australia and New Zealand have recently developed approaches to meaningful public engagement with the goal of mutual informing of public, experts and policy makers, while in the United Kingdom, the Human Genetics Commission was formed as a result of the 'The Advisory and Regulatory Framework for Biotechnology: Report from the Government's Review'.(32) The report was responding to consultation that emphasized the need to increase public confidence, transparency, the range of ethical perspectives and issues, and to be more inclusive of the general public as stakeholders.

Similarly, the New Zealand Bioethics Council is engaged in public consultation in order to:

Enhance New Zealand's understanding of the cultural, ethical and spiritual aspects of biotechnology. Ensure that the use of biotechnology has regard for New Zealanclers' values.(33)

Following the lead of the United Kingdom (32) and the Ontario Advisory Committee on Genetics (34), the report of the Australian Law Reform Commission recommended formation of the Human Genetics Commission of Australia (HGCA). A standing commission with community members, the HGCA responsibilities would include: �9 national leadership in managing the process of change,

including engagement of the public on these issues; �9 relevant expertise and a consultative mechanism for

the development of policy statements and national guidelines in this area, where appropriate in association with other governmental agencies or the relevant industries and organisations;

�9 assistance with the development and coordination of communi ty , school, un ive r s i ty and profess iona l education about human genetics.(35: 5.83) These recommendations recognize and give considerable

influence to experts, but also increase the attention to be paid to not only educating, but to consulting a wide selection of the public. They reflect a growing international

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recognition that policy and biotechnology must do a better job of being inclusive in determining what is in the public interest - engaging the public in ongoing dialogue rather than merely educating and assuring.

How can ethics contribute to sustaining and developing these public dialogues? Based on a description of ethical analysis that is oriented to adequate representation, ethical analysis could support identifying persistent moral issues, it could enable agreement on points of convergence, and encourage the development of a culture that supports sustained critical dialogue, iterative social policy and tolerance of diverse moral perspectives.

Pressures for Premature Closure of Ethical Analysis There is a serious risk associated with the use of ethics is to assess and propose policy. Governments, institutions and even corporations engage ethics experts and committees to provide advice and legitimacy for their policies and practices, and to attempt to manage awkward social debates. The institutionalization of ethics as a source of policy analysis encourages narrow definitions of issues and terms of reference in response to short time frames. The results are often criticized for being minor reforms rather than more systematic evaluation of how issues are woven into the ability of various groups to use power to influence social, economic and political activities. Examples include how national governments or international agreements can exercise any control over international corporations; how collaboration on trade agreements can move beyond commercial and economic interests to assess issues related to the global environment; how countries or communities can preserve their moral values or culturally important practices.

There is also a tendency for some approaches to ethics to attempt to resolve issues by presuming that freedom of science and the requirement of commercial investment are in the public interest. It is not that some other assumptions are more justified (e.g., that science should be constrained to pursue democratically selected objectives), but that none of these assumptions are non-controversial or universally accepted. Ethical analysis must display the role that these assumptions serve in analyses, clearly displaying where there are controversies.

This is an awkward and difficult task when ethics is funded by agencies that inevitably make controversial assumptions. A conflict of interest may exist when funding sources, whether government agencies, public institutions

or companies , have object ives that rout ine ly make assumptions that require exposure and evaluation in ethical analysis. It may be that the task of fully displaying assumptions that shape apparently conclusive analyses can only be done by a critical community of analysts rather than by one analyst who has somehow escaped inevitable embeddedness in social and political life. Distrust of ethics is compounded when the institutionalization of ethics in committees and advisories is cited by institutions as if it is a panacea for problems of representation or access by critical voices, particularly when the ethical deliberations are not publicly accessible or transparent.

Sustained Ethical Dialogue and Debate When supported by good social science, ethical analysis can provide a more detailed understanding of the complexities surrounding a policy decision. Ethical analysis will rarely, however, be definitive or independent ly legitimate a particular policy. This is in part because policy is rarely a simple moral position - it is almost always a compromise between different sets of interests, each with some degree of legitimate entitlement, that conflict with each other. Ethical analysis of real life moral disputes often identifies several morally permissible alternatives; selection from permissible alternatives is often based on who has authority to make the decision in the absence of an ethical constraint (e.g. patient autonomy or legislative authority), or some preference of the group or the majority once the alternatives are considered (e.g. consensus conferences, citizen juries).

Ethical approaches often identify persistent controversies or moral problems about which reasonable people disagree. If all participants understand and accept that the moral issue is irresolvable, then they may be able to find convergence on other issues without the sense that they have been manipulated into compromise on the moral issue. For example, disputes about how much uncertainty about environmental risk from genetically modified organisms is acceptable will not be resolved by better descriptions of specific risks. Ethical analysis can establish that disagreement is based on premises about which reasonable people can disagree, and that no policy will resolve the moral issue. From that vantage, agreeing to methods of reducing known risks and trying to identify as yet unknown effects is no longer a compromise on the moral issue.

In another context, disputants from all perspectives on abortion can agree that it is desirable to reduce unwanted

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or unplanned pregnancies. Enduring moral questions such as the value of the embryo or foetus, the moral weight of women's choices, and appropriate means to be used in reducing unwanted pregnancies, are not resolved by this agreement. In fact, the moral status of the foetus or embryo arises again in disputes about stem cell research, sex selection and screening for disabling conditions.

Identifying enduring moral problems can support a more prac t ica l focus on where ag reemen t or addi t iona l information can achieve goals desirable to all participants independent of their position on the moral controversies. If a policy or practice could be shown to increase the number of unwanted pregnancies , that would const i tute an important reason to re-evaluate the policy from any perspective on abortion. The concern that a particular approach to risk assessment or reduction is incomplete does not prevent agreement that the risks identified should be minimized and continually assessed, or that alternatives should be evaluated for whether they present similar gains with less uncertainty of risks.

Further, recognizing the nature of the disagreement as related to difficult-to-measure or long-term effects provides strong incentive to design methods that will collect data to enable assessment of the policy for the more controversial effects (and may motivate sustained public scrutiny). For instance, while assessing identifiable risks might make up the criteria for licensing a product, the effects of intellectual p roper ty protect ion on economic oppor tuni t ies and consumer choices should also be monitored, with a commitment to reassess after a period of data collection. Even absent a change in policy, demonstrating a clear tendency to oppress cultural practices and consumer choices may well lead to organized protest, consumer education and actions that effectively structure economic activity to better support alternative practices and products. Policy is one real-time approach to balancing interests. Gathering data to reassess the policy for its effects on all related interests means not only that the policy might be altered, but that the social and political culture might change to support a different policy, or perhaps cultural or other changes may obviate the need for policy, v

Transparency of ethical analysis is important because of its role in s u p p o r t i n g a c c o u n t a b i l i t y for representativeness and justification. Beyond the obvious problem of refusing to disclose the basis for decisions, a failure of transparency might occur when a particular

perspective has been understood but its role in presenting rationales in support of different positions is not apparent. In the Canadian context, both environmental and First Nations' accounts of the effects of salmon genomics and aquaculture on the environment emphasize the risk to environment and wild stocks. But the history and politics related to their concerns are relevant to each perspective and part of why they perceive their concerns to be legitimate interests against economic and liberty claims. An ethical analysis might present the concerns about environment and wild stocks as legitimate, perhaps by simply noting convergence and assessing the empirical support for the concerns . But the two groups might v iew this as insufficiently transparent because it did not explain how the historical and legitimacy claims were assessed.

A more transparent analysis would explicitly consider whether, for example, the First Nations' concerns were a legitimate extension of treaty rights, and the extent to which that was relevant to environmental effects on treaty lands from activities conducted elsewhere. Similarly, Moana Jackson characterizes the New Zealand 'Royal Commission on Genetic Modification' report (37) as hearing Maori, concerns wi th ' exqu i s i t e po l i t eness ' , a r t i cu la t ing dissatisfaction with the consultation and outcomes as only in part due to the policy. The other component is the ability of policy makers to bracket Maori concerns as 'cultural', thereby avoiding providing reasoned argument about how they thought they could justifiably be discounted in the policy recommendations.(37)

In this way, what begins as an apparen t ly thin t ransparency requirement that the ethical analysis be explicit becomes a more demanding requirement that the perspectives represented be thoroughly considered and that the i r e n g a g e m e n t ref lect an u n d e r s t a n d i n g of the perspective. This means that the consultations necessary to enhance the representativeness of ethical analysis cannot be used merely as interesting illustrators of key theoretical points. Rather, the actual moral assumptions and political claims made by the various perspectives must be explicitly assessed, and alternative interpretations and their differing premises articulated. It is inevitable that parties to a dispute will take issue with how well they were understood, particularly when their views are not as influential as they think they should be. But agreement on the fairness of an assessment is only possible with rich and mutua l ly a c c e p t a b l e a r r a n g e m e n t s for t r a n s p a r e n c y and

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accountab i l i ty for fair and thorough representat ion. The ul t imate issue is not wha t is the right pol icy or

whether experts or non-exper ts are correct, but to recognize that the ethical issues are more about the kind of society we wan t to become and the role of t echno logy in that society. Gaskell and colleagues capture this not ion:

A n d here the conf l i c t s tha t emerge are abou t the fundamental questions, 'what sort of society do we want and how can new techno logy help in achieving it?' These are quest ions about ethics and social va lues ; science alone cannot answer them. In this sense, any p la t form of public debate between au tonomous and responsible citizens is to be applauded. And if social ly susta inable technologica l innova t ion is a societal goal, appropr ia te pla t forms for such debates will need to be establ ished (on nano techno logy for example) if we are to avoid rel iving the type of conflicts that raged over b io techno logy in the mid to late 1990s.(38)

To be useful, ethical analysis must be based on good representat ion of interests, be accountable for how issues are defined and t ransparent ly describe how interests are assessed. Ethical ana lys i s should con t r ibu te to publ ic discourse and pol icy debates a clearer unders tanding of the basis for enduring moral disputes, and an abil i ty to identify convergences without appearing to resolve the endur ing moral disputes. Ethical analysis should enable part icipants to establish what would count as fair decision making and accountabi l i ty for policies and their iterative review.

Conclus ion The kind of society we wish to become is a cons tan t ly evolving and (importantly) re-negot ia ted vision, one that calls for vigi lance to ensure all citizens have access to the f rameworks for coopera t ion that shape policies and the distr ibution of social goods. Combining public consultat ion and e th ica l ana lys i s p rov ides s t r o n g suppo r t for the involvement of civil society in an iterative assessment of what is rational, good pol icy and fair governance. Public consul ta t ion increases the range of interests and ethical accounts considered, improving the representativeness of the definition of issues that inform ethical and policy analysis.

By provid ing greater expl ici tness and t ransparency of r e a s o n i n g , e t h i c a l a n a l y s i s p r o v i d e s s t r u c t u r e fo r u n d e r s t a n d i n g and r e s p e c t i n g d i v e r s e p e r s p e c t i v e s . Ident i fying irresolvable moral problems allows part ic ipants

to focus on designing procedures for coming to conclusions a b o u t p o l i c y or o t h e r fo rms o f g o v e r n a n c e w i t h o u t a t tempt ing to resolve or neglect the moral issues. Public d i s c o u r s e i n f o r m e d b y c o n s u l t a t i o n s o r g a n i z e d and analyzed as ethical analyses will make clearer the moral issues at stake and the basis for divers i ty of opinion.

In this context , even in the absence of social policy, consumers and cit izens will have a greater capac i ty to contr ibute to the poli t ical and commercia l envi ronments as c i t izens and consumers . Ethical ana lys i s , l ike r isk analysis, can help describe the range of effects related to pol icy decisions, but pol icy must u l t imate ly be jus t i f ied with reference to public interest, and that requires inclusive and i terative public dia logue and debate among diverse moral perspectives. One benefi t of ethical analysis is more in fo rmed policy, but too na r row a focus on po l i cy as outcome threatens to undermine the abi l i ty of ethics to support inclusive and essential debate on endur ing moral issues. Ethical analysis that frames issues and respectful ly cons ide r s the full r ange o f pe r spe c t i ve s can suppor t ameliorat ion of barriers of access to cooperative frameworks that shape pol icy and society, and provide a s t ronger basis for trust in social insti tutions.

A c k n o w l e d g e m e n t s This paper is produced through the support of Genome Canada and Genome BC for the project, 'Democracy, Ethics and Genomics: Consultat ion, Deliberat ion and Modelling' . James Tansey, Patr ick Lewis, the project team, and two a n o n y m o u s r e v i e w e r s h a v e p r o v i d e d v e r y u s e f u l commenta ry and assistance.

Notes i There are numerous and effective critiques of the authority given to

particular conceptions of autonomy, but these are beyond the scope of this paper. The point here is that even if autonomy is given strong support, public policy cannot derive its legitimacy from individual autonomy. Autonomy as a value in public policy requires separate evaluation against other important moral values and interests.

ii No single method is adequate. An approach that does not challenge participants to evaluate the interests for relative weight may maximize identification of interests at the cost of reduced clarity of moral reasons. Some of the interests identified may be trivial, even to those who identified them. Ethical analysis must inevitably engage the task of ranking or assessing interests and moral claims, but this discussion is oriented to the problem of increasing the resources brought to the ethical analysis at the outset.

iii The inhibiting effect of concerns on hopes was based on the experience of the consultation company and in discussion with academic experts. An anonymous reviewer raised the issues of whether identifying hopes inhibited identification of concerns. The groups all spent more time

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on concerns than hopes, and some participants cmmnented that they felt hypocritical being so critical after naming their hopes. It remains possible that some concerns were unidentified due to the inhibiting effect of the hopes. Although beyond the scope of this paper, it may be useful to avoid separating human and non-human genontics so that each area can be informed by reflections on what interests are served by different technologies and policies. The DEG project described in this paper is also an exploration of this approach. This intentional use of power to structure and shape economic, social and political activities has been characterized as a broad definition of governance (36), and is discussed further.(14)

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