THE PUBLIC PARTICIPATION PROGRAM OF THE ROYAL COMMISSION ON NEW REPRODUCTIVE TECHNOLOGIES: AN EVALUATION
Christine Marguerite Massey
B.A., University of Ottawa 1990
THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in the
School of Communication
@ Christine Marguerite Massey SIMON FRASER UNIVERSITY
April 1994
All rights reserved. This work may not be reproduced in whole or in part, by photocopy or other means, without permission of the author. APPROVAL
NAME: Christine M. Massey DEGREE: Master of Arts TITLE OF THESIS: THE PUBLIC PARTICIPATION PROGRAM OF THE ROYAL COMMISSION ON NEW REPRODUCTIVE TECHNOLOGIES: AN EVALUATION
EXAMINING COMMITTEE:
CHAIR: Dr. Patricia Howard
I - /-n /-n Leiss, Professor Senior Supervisor
Dr. Robert S. Anderson, Professor Supervisor
Dr. Arlene McLaren, Assoc. Professor Internal Examiner PARTIAL COPYRIGHT LICENSE
I hereby grant to Simon Fraser University the right to lend my thesis or dissertation (the title of which is shown below) to users of the Simon Fraser University Library, and to make partial or single copies only for such users or in response to a request from the library of any other university, or other educational institution, on its own behalf or for one of its users. I further agree that permission for multiple copying of this thesis for scholarly purposes may be granted by me or the Dean of Graduate Studies. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission.
Title of Thesis/Dissertation:
THE PUBLIC PARTICIPATION PROGRAM OF THE ROYAL COMMISSION ON NEW REPRODUCTIVE TECHNOLOGIES
Author: - _ signatup j
I ,I I' , qL+ date' Abstract
The thesis begins with the assertion that there is a need to critically examine the use and prioritizing of scientific knowledge over other kinds of knowledge and a corresponding need to recognize a greater role for lay knowledge and experience in decision-making on science, technology and medicine. It is with this frame of reference that the public participation program put in place by the Royal Commission on New Reproductive Technologies is examined. A review is provided of the history and challenges of public participation in general, of public involvement in science policy and in Canadian public inquiries. Four criteria for evaluating public participation efforts in science and technology policy developed: education/information resources; degree of accessibility; level of (financial) resources and; type of and amount of feedback/opportunities for exchange. The work of the Royal Commission on New Reproductive Technologies is then summarized. Sources for the case study include: personal interviews, written personal accounts, official documents and publications, court documents and media accounts. The participation program of the Commission is considered in five parts: Initial efforts, including the use of polls; Education; Public Hearings; Private Sessions
iii and Other Private Communications and; Selected Stakeholder Consultations. The evaluation concludes that the public participation program provided none of the resources, feedback, level of accessibility or education necessary to allow the public the space and the tools necessary to engage in the process in a meaningful way. The limited opportunities for public involvement, by not allowing for a deconstruction of science or scientific decision-making, denied the value of the public perception of science and contained participation within the consumer or user model, preventing significant public input into questions of research priorities and management. The most important consequence of this limited process was the way in which it affected the development of and perception of legitimate alternative policy options. If participating groups lacked the resources, the voice and standing to present credible alternatives to the Royal Commission, the only credible alternative was the one currently in operation in other areas of health care and in other Western industrialized nations - the biomedical model, a model which simply perpetuates the traditional control of medicine and medical technology. ACKNOWLEDGEMENTS
Many people are due thanks for seeing me through the writing of this thesis. I must first thank the women who shared their experiences and opinions with me; this thesis would not have been possible without them. Bill Leiss provided an ideal environment at CPROST for "doing" while learning. Among my colleagues: Judy Morrison, for her advice, editorial skills, insight and friendship; Christina Chociolko, for the sober second thought; Louise Vandelac, for her openness and perspective; Gwynne Basen, for her energy and activist spirit; and the women of the Vancouver Women's New Reproductive Technologies Coalition for helping to test my assumptions. Finally, thanks to Mick Bryson for his unqualified support and stress management skills. TABLE OF CONTENTS PAGE Approval ii Abstract iii Acknowledgements v Table of Contents
1.0 Introduction
2.0 Public Participation and science policy
2.1 Public Participation
2.2 Public Participation in Science Policy
2.3 Public Inquiries and Public Participation
2.4 Criteria for Evaluating Participation
3.0 New Reproductive ~echnologiesand Canada
3.1 The New Reproductive and Genetic Technologies
3.2 New Reproductive and Genetic Technologies Enter the Canadian Policy Agenda
3.3 The Royal Commission on New Reproductive Technologies A) Mandate B) Membership
3.4 The Work of the Royal Commission on New Reproductive ~echnologies
3.5 The Recommendations of the Royal Commission on New ~eproductiveTechnologies
4.0 The Public Participation Program
4.1 Initial Efforts A) Surveys B) Search Conference 4.2 Education A) Public Information Kit B) publications C) Panel Discussions
4.3 Public Hearings A) Preparing for the Hearings B) The Hearings
4.4 Private Sessions and other Private Communications A) Private Sessions B) Written and Taped Submissions
4.5 Selected Stakeholder Consultations A) Organizational Consultations B) Roundtable Discussions, Theme Consultations and Colloquia
5.0 Discussion A) Public Relations or Public Involvement? B) The Construction of Credible Alternatives C) An Emerging ~lternative D) Mandated Participation
6.0 Conclusion Endnotes Bibliography Appendices A - Notice of Public Hearings B - List of Interviews
vii 1.0 INTRODUCTION In the context of an ever increasing array of new technologies, chemical processes and environmental hazards, our current relationship with science and technology can perhaps best be described as ambivalent. As the authority of science has grown, argues Brian Wynne, "the basis of its authority in a vast diversity of areas has been naturally more critically examined."' While the first part of this century was characterized by a much more optimistic public and official faith in the capacity of science and scientists to improve our lives, today this unquestioning faith has largely dissipated.' Instead there exists a more widespread scepticism regarding the increasing pace of new advances in science and technology, their potential to change our lives and our future and our collective capacity to manage both the technologies and the changes brought on by their use.3 The detonation of the atomic bomb, Love Canal, Three Mile Island and thalidomide have all too obviously demonstrated the consequences of unquestioning acceptance of scientific "progressn. Nonetheless, currently, when faced with decisions with a scientific or technical element, public decision-makers will often turn to the more socially legitimate scientific views over what are perceived to be the uneducated opinions of the p~blic.~No doubt, this method serves to expedite the
public policy process - it is far easier to endorse a scientific study as the final authority on a subject than to embark upon a complex public decision-making process wherein scientific issues as well as political interests and values can be discussed. A technocracy - government by technically trained specialists - replaces democratic decision-making processes and does not provide for public understanding.5 When a preventable tragedy occurs, as did for example with the Dalkon shield6, decisions made on the public behalf are painfully revisited. There has been some recognition on the part of public decision-makers that this kind of post mortem examination of past technological decisions needs to be replaced with a priori examinations of technologiral innovations. Consequently, there have been reevaluations of science and its management on several fronts: (i) the developing field of the sociology of science has investigated how scientific activities interact with and reflect social and individual beliefs; (ii) the public policy field has seen several successive efforts to develop a series of more
sophisticated tools of analysis and management - technology assessment, environmental impact studies, risk assessment and management, etc.; and finally (iii) there has been a renewed interest in public participation in science and technology decisions with an effort to legitimate lay assessments of technology. This paper, while informed by the first two areas of investigation, will focus on the third area of public involvement in technology assessments. This paper asserts that there is a need to critically examine the use and prioritizing of scientific knowledge over other kinds of knowledge and a need to recognize the benefits of lay knowledge and experience for sound science policy. It is precisely this kind of public discussion that is required and that is currently lacking in our political processes around decisions involving scientific and technical experts. Among the reasons for the paucity of the debate around technological advances are science's reputation of objectivity and the authority it derives from this reputation, as well as the economic importance accorded science and technology by governments seeking international competitive advantage. Neither of these characteristics encourages a critical engagement with the assumptions and risks of technological innovations. Ultimately, however, this process is concerned with power. ''To innovate is to legislateu7 - Philip J. Frankenfeldlssuccinct phrase sums up the impact and scope of technological change. Specifically, Frankenfeld refers to how power is created, fostered and supported through the creation of political communities that develop and use a technology; these relationships enter our lives as fait accompli, effectively, as "legislationM or the law. Few of those outside these political communities and elites have a say in this vlegislationN in a way quite contrary to democratic principles. Clearly, there is ample room for the lay public to have more information, input and control over the technological decisions now being taken on their behalf. The goal of public involvement, again to use Frankenfeldls words, is not to "kill the technology goose that lays the golden eggs but merely to housebreak it.lf8Enabling the lay public to gain some real control over technological change could go a long way towards balancing the dominant economic and scientific models with notions of social justice and ethical concerns not necessarily a part of current decision-making.
With these objectives in mind, this thesis will proceed with an evaluation of the public involvement and consultation process of the Royal Commission on New Reproductive ~echnologies. New reproductive and genetic technologies (NRGTs) are some of the more complex, confusing and politically divisive technologies to emerge recently. NRGTs include artificial insemination, in vitro fertilization, embryo transfer, genetic manipulation, sex selection techniques and others. The issues around NRGTs have been dealt with most commonly in other Western democracies with state-sponsored public inquiries of one form or another. In October of 1989, the Canadian federal government followed suit with the formation of the Royal Commission on New Reproductive ~echnologies (RCNRT). The Commission was mandated to develop and recommend policies to regulate and guide NRGTs and was explicitly directed to weigh the scientific developments against "their social, ethical, health, research, legal and economic implications and the public interest.^^ This paper will begin with a discussion of the general principles and challenges of public involvement, in particular as it pertains to scientific and technological issues. There will also be an elaboration of the specific problems and conditions of public involvement in governmental inquiries. Some criteria for evaluating public involvement in the context of a scientifically-informed public inquiry will then be put forward. Evaluation will focus on the process of participation with particular attention paid in this paper to the resources and legitimacy accorded public involvement. The description of the work of the Royal Commission on New Reproductive Technologies (RCNRT) comes from information gathered from a variety of sources, including personal interviews, written personal accounts, official documents and publications of the RCNRT, internal documents of the RCNRT, court documents and media accounts. Finally there will be an overall evaluation of the public involvement and consultation program of the Commission with some discussion of the implications for future inquiries of this nature. 2.0 PUBLIC PARTICIPATION AND SCIENCE POLICY 2.1 Public participation While citizen involvement may seem to be a central tenet of Western democracies, public participation has been described as a concept in search of a definition.' public participation in the Canadian system of government is most widely characterized by periodic voting in elections, a very limited form of involvement. Support for broader public participation in government policy making has been an increasingly popular goal since the mid-50s, a support that gained a firm hold in the American civil rights and environmental movements of the 1960s .' Efforts at forging new forms and traditions of involvement have not been uniformly successful. At their worst, public participation exercises are public relations events - one-way, top-down communication efforts aimed at placation and the legitimation of state policies. At their best, public participation processes are negotiated with involved citizens who hold their own funds, experts and exercise
decision-making power.3 The uneven success with public involvement is partly due to the lack of a clear articulation of what participation is, what it is to accomplish, when it is required and what goals it is expected to achieve. Without a clear delineation of what responsibilities governments have in public participation efforts as well as an explicit description of the role of the public, including its limits, the expectations of participants and officials will inevitably diverge. Public groups end up dissatisfied, feeling deceived or ignored. Government officials are left feeling frustrated with what appears to be a difficult, costly and time-consuming process with groups who want more than is being offered them. While many definitions of public participation have been offered, Sherry ~rnsteinprobably distilled the idea to its most fundamental element when she wrote "citizen participation is ... citizen This rather bald equation perhaps best explains the great ambivalence around the issue of participation in our democratic society. For while the concept of public participation is well regarded and applauded by all, when that same participation is demanded by our society's "have-notsn,the issue somehow becomes less clear-cut. Citizen participation, by redistributing decision-making authority, redistributes societal risks and benefit^.^ Citizen involvement necessitates the sharing of power although this is rarely explicitly acknowledged in discussions about its
feasibility.6 The effect of many progressive participatory experiments has been the delay or outright cancellation of several large scale industrial developments.' Other case
studies show that regulation, stimulated by public pressure, is often the main motivating factor behind corporate efforts to integrate public concerns into internal company procedures.' Participation has also been a major ingredient in improving health and safety standardsagThese examples point to the potential of large participation efforts to develop a "critical massM of citizen power sufficient to contend with large industrial players and other established powers. Public participation often forces a more balanced consideration of a scientific controversy by moving beyond the traditional economic framework to include discussions of long-term social and political consideration^.'^ Confusion over the goals of public participa+ion can be traced to a divergence of goals between government decision- makers and citizens. For administrators, public participation is most often viewed in an instrumental way, as an end in itself. Most often these goals are expressed by phrases such as, "reducing conflict," "educating the publicu or "increasing legitimacy."" These elements focus on the process of participation as if it were ~noughto simply have a process in place. Without an equivalent notion of sharing authority or decision-making power, the imbalance results in
the most common weakness of citizen involvement efforts - participation without substance. From the point of view of participants, groups and individuals are often motivated by a desire to regain a sense of control over decisions that affect their lives. Particularly in issues involving science and technology, participants seek to reverse the powerlessness they feel over changes which seem out of control and yet are very significant to their well-being.12As a result, participants in public involvement efforts tend to be most concerned with the outcomes of decisions, for example, not to have a nuclear plant built in their area.I3 This is not to say that process is not important for participants. Quite frequently, the perception of a corrupt or insincere process is enough to convince participants to withdraw from a consultation; without a fair process, there cannot be a substantive outcome. Again, the root of the problem lies in the distribution of power. Most public participation efforts originate with governments and so, not surprisingly, are designed to suit the goals of governments. Public participation assumes a variety of forms depending on the goals the initiator of the process seeks to achieve and the goals the initiator attributes to the intended participants. The form of the procedure depends as well on the degree of influence initiators are prepared to accept over their decisions and actions. Participation is also a strategic tool and is organized on the basis of the initiator's strategy.'' Control over participation clearly lies with project administrators or government officials. The prerogative to define the process does not belong to participants unless explicitly ceded to them by those who control the process. Even the power to define the "publicu or "publicsM to be consulted lies with the initiator. Efforts to gain control over the public participation process could begin with our language. The German equivalent of our term "public participationw certainly holds promise;
Mi tbestimmung translates as "co-determinationft.I5 This word better indicates than the English term, the real goal of greater public involvement for citizens. 2.2 Public Participation in Science Policy If public involvement in public decision-making is problematic, then public involvement in science policy decision-making brings with it anot5er particular set of problems. A general definition of public policy is the, exercise and structuring of power, influence and legitimate coercion, (as well as) expressions of normative intent and therefore of ideas, values and purposes.1 The above definition indicates the connection between power and policy. Public involvement can be considered as part of an attempt to redistribute some of this power. Science policy designates policy that uses science and scientists as a technique or means for understanding and solving problem^.^ What is the usefulness of distinguishing science policy from other policy? While the first definition makes it clear that policy is about power and the ordering of social values, when scientific language, experts and the authority that their knowledge carries with them are introduced into the policy process, another set of power dynamics comes into play. The pattern of decision-making on science and technology issues have traditionally not been ones that encourage or even envisage a role for the p~blic.~As a general subject, science has been shown to have a low salience for the adult population despite the high number of issues in which science plays a role. Estimates of the proportion of the American public attentive to science and technology matters reach a high of only 20%.4 This lack of interest has been attributed to many causes, among them, the specialized knowledge and language, the rapid pace of change, the novelty of some of the issues and the broad scope of their implications and impactsS5Low levels of public attention allows scientifically-informed issues to be defined and resolved outside the electoral process and determined by a relatively narrow segment of the population.6 The authority and independence of science are drawn from the ideal of the "scientific methodn which strives for observation and reasoning without bias allowing for a consistent, neutral and definitive representation and explanation of reality.' his approach belongs to the Western model of modern science which differs from its predecessors in its strict division of science from moral philosophy.' Science, in this incarnation, is considered an autonomous and morally neutral institution. The objectivity derived from the objective scientific method justifies the separation and protection of scientists and their work from social directives and government interference; both are considered "irrational" or "politicaln and extraneous to scientific work. Scientists purportedly work in a social vacuum, operating free of social and political preconceptions and constraints, usually within an idealized university setting. Conflicts that escalate beyond the domain of scientific method and can no longer be settled by "facts" are no longer considered scientific and therefore no longer wobjective" or "scientificu; the Nscientific" is gj-ven epistemological priority in this world of reason.9 Some science policy theorists have deemed it useful to make a distinction between non-scientific issues from strictly scientific ones.
The result has been the term trans-science - those issues "which can be asked of science and yet cannot be answered by s~ience."'~Sheila Jasanoff suggests that this kind of distinction is false and constitutes a reaction to challenges to scientific authority. The concept of trans-science sewed a strategically crucial purpose for scientists interested in reaffirming their professional authority. It suggested that the cognitive indeterminacy uncovered by the regulatory process was not intrinsic to science, but rather lay beyond or outside science." The identification of a problem as "scientificN or "politicaln is in itself a political act as the particular designation of an issue affects the distribution of decision-making power and the legitimacy afforded different social and governmental actors." Appeals to the objectivity of the scientific enterprise provide a useful strategy to justify the authority, or epistemological priority, of science; science becomes the only legitimate source of "truth." The development of science and its proponents in the image of objective and neutral disseminators of pure knowledge, unencumbered by prejudices and vested interests, has largely prevented other explicitly political groups, commonly called special interest groups, from entering the debate over scientific and technological risks.13 In this way, science maintains its touted independence. For politicians and administrators, there exists significant pressure to use science as a replacement for democratic decision-making. Science represents a valuable political resource; it is considered legitimate by simple virtue of being scientific and does not require legitimation from other values.14 The capacity for the negotiation of standards based on a democratic distribution of risks and benefits in this scenario is severely curtailed. Sxperts dominate the public discourse and problems are denied the full range of discussion and alternatives. In the end, the
ethical dilemmas at the core of the debate are ignored.IS Changing this pattern and initiating effective public participation in scientific issues has been difficult. The lay public traditionally has had no legitimate basis for its involvement in scientific matters, lacking, according to expert criteria, the necessary level of knowledge to contribute meaningfully to the policy debate. Without a recognized knowledge base, public opinions on science are often classified as irrational or as expressing "fear of the unknown." Public education campaigns undertaken to redress this ignorance often end up trying to bring public views in
line with those of the experts.16 This paternalistic pattern is repeated within the field of medicine, a subset of the scientific discipline. Diana Dutton describes the medical treatment model which favours a paternalistic approach towards patients, in which patients' rights depend on doctor's judgements of what risks to disclose.'' The notion of informed consent, purportedly developed to protect the rights of patients, all too often emphasizes consent to the course of treatment preselected by the doctor and the full range of relevant information and options is denied.18 Feminists have demonstrated how this pattern is further reinforced in the area of women's health and have pointed to the medical profession's systmic devaluation, misdiagnosis and mistreatment of women.19
Recently, assumptions around lay assessments of technology have been challenged, largely in the field of the sociology of science and risk communication. The sociology of science, or, attempts to understand how social norms can influence not only the structure of scientific instituticns and inquiry but the cognitive content of science were set in
motion with the 1962 publication of Thomas Kuhn's seminal work, The Structure of Scientific Revolutions. Since then, however, the sociology of science has extended the linkages between society and science far beyond what Kuhn initially suggested. The fundamental tenets of scientific inquiry have been critically examined in case studies of scientific discovery and in~ention.'~ Sociologists argue for a greater emphasis on the social world and its influence on the conclusions of science. Science, it is argued, should be comidered a cultural product and thus intimately associated with the social world. Specific scientific principles and views of nature that arise at any particular time are not completely rational nor are they completely arbitrary. Scientific knowledge is linked to the social structure and will therefore serve social purposes and be linked to existing social patterns and productive activities. The natural world places some limits on interpretation but these li~itswill be filtered and mediated by the cultural context of the time.21At some level, the knowledge will be as accurate a representation of nature as possible, but this representation will also be socially relevant in its particular context.22Science remains a powerful method to obtain specific kinds of knowledgez3about the world but it is only a single method for certain kinds of knowledge. An appropriate question for a social analysis of science is for whom is this knowledge useful and to what ends? Ignoring the social embeddedness of scientific research allows science to assume great power. When social and moral concerns are expressed as natural laws, real causes of problems are easily explained away. Richard C. Lewontin provides the example of the modern fight against tuberculosis, a leading killer of the poor classes in the first part of this century. Although the cause of tuberculosis was scientifically proven to be the tubercle bacillus, Lewontin argues that the vaccine developed to fight it had little effect on the disease. In the end, general social improvements in nutrition due to increases in the real working wage spurred by union activity caused the most significant improvement. Lewontin argues that it is far more accurate to describe the cause of tuberculosis as unregulated 19th century capitalism. To call the bacillus the cause is to ascribe agency to a single-celled organism." Recent outbreaks of tuberculosis in economically depressed inner-city ghettos and native reserves provide further evidence that the best medicine against disease is an accessible and well-supplied health care infrastructure combined with a minimum income level. A similar argument can be made for the current medical problem of cancer. While one can identify a host of cancerous agents, to do so displaces responsibility to an inanimate object. Instead, one should look to industrial and consumer practises where the demand for and use of cancerous substances begins. The danger lies in ignoring the dynamics of social relations and processes in favour of inanimate
objects.25 Informed by the work in the sociology of science, theorists in risk management and risk communication began to argue for a greater role for the public in scientific and technological disputes. If, as the sociologists of science argue, scientific controversies are rarely strictly about science but in fact reflect a negotj-ation of social relationships and values, norms and political boundaries, the public should be involved. Including the public in scientific decisions also helped to fuel efforts to redirect the focus of technological decisions away from unresolvable technical questions such as "how safe is procedure x" and "how safe is safe enough" to questions of process, fairness and democratic principles. The inclusion of the public in debates in which they had previously had no legitimacy required an elaboration of the value of the public perception of science. Writers such as Alonzo Plough and Sheldon Krimsky, Charles Perrow, and Brian wynneZ6 provide evidence for the different and balancing values which public perception brings to a scientifically informed controversy. Plough and Krimsky emphasize the different "rationalitiesw represented by science and lay knowledge and emphasize the need for both. While scientific rationality divorces context from a specific phenomenon to achieve universal conclusions, lay perceptions of science make explicit the political and economic aspects of science. The public understanding of science personalizes risks, or cultural rationality emphasizing the family and the community and includes a view of an individual's or a group's relative power or powerlessness with regard to the distribution of risks and benefits that a new project, or technology will bring on.27 Perrow's concept of social rationality is similar to Plough and Krimskyls cultural rationality. He argues that the particular qualities of social rationality provide a crucial counterpart to scientific rationality in that it recognizes the cognitive limits on rational choice; we can only decide what is important by judging against our specific experiences and priorities. Social rationality exhibits a scepticism of any purportedly "univers31 and scientifico truth and instead emphasizes interdependence as different knowledges, experiences and values must be brought to bear on risk decisions. Technical knowledge is balanced by a respect for social ties, traditions, human dignity and
security.28 Similarly, Brian Wynne emphasizes that the lay public does not so much react to scientific knowledge per se but to
the total social complex of which science is a part - patterns of ownership, control and organisation of science.29The understanding of this complex is then further
filtered by the social identity of the people in question - their relationship to the state, to the 'experts, their positions of social power, etc. Wynne suggests that what is commonly perceived as the public misunderstanding of science is in fact a rational understanding of the "complete discourse of science" from a particular social position.30 Public views on risk are also dependent on the degree of trust held in governmental institutions as well as scientific representatives and institutions to manage risks on the public's behalf. Past experience with fairness and moral responsibility from these institutions and others like them will all be seen to impinge on social relationship^.^' Scientific rationality emphasizes the ability to control and manipulate nature and objects while everyday ordinary social life is contingent on a host of uncontrollable factors. On this point alone there would seem to exist a fundamental tension between the culture of science and the culture of social life and their subsequent judgements of risk.32 It is worth at least considering that limited public interest in and support for science is simply a natural function of lack of power, a belief that they cannot exercise any power to control science, so why make the effort to ~nderstand?~~ To promote the public perception of science is not to argue that science has no role at all to play in policy decisions but that it cannot be the only deciding factor. Science represents only a certain kind of knowledge which is most effective when combined with social rationality. Public involvement in science policy issues can "serve as a mechanism for expressing and negotiating conflicting political preferences.'' It can also provide a "means of clarifying uncertainty and establishing the limits of expertise.~~~The need exists for science policy administrators to develop a process which can include citizens in a forum to discuss and question both the scientific rationales for decisions as well as the political, social, community and moral concerns. Abby Lippmann provides a vision of what meaningful public involvement in science policy would look like, using the example of prenatal diagnosis. She sees a much less distinct division between scientists and lay people, the latter in this case being the women recipients of prenatal diagnostic tests. The testing of new prenatal testing
technologies would not be done to women, but would be something that professionals and lay women would do for themselves. Randomized trials of new techniques would be initiated together and objectives, concerns and approaches acceptable and useful to both could be negotiated. This process recognizes that, Scientists can (sometimes) answer Iscientific1 questions. However, since the questions we pose are not (and cannot be) value free, and since the answers to technical questions, on their own, are insufficient bases for policy decisions, the informed and concerned public must be responsible for (in control of) the application of the results of scientific investigation.35 2.3 Public Inquiries and Public Participation Public inquiries and royal commissions introduce their own set of specific conditions and traditions on public participation. In Canada, similar rules and privileges govern both public inquiries and royal commissions and the legal distinctions between the two are not significant. For this paper, the two terms will be used interchangeably and both are defined as, "an investigation, conducted by a body independent of government departments, which involves both assessment and the opportunity for participation."' Royal commissions in Canada have had an uneven history. A popular governmental tool, they are increasingly regarded with cynicism by the public. Inquiries are frequently characterized as a stalling tactic by a government unwilling to take action, as elitist bodies or as 'ways of pacifying agitated voters by consulting them. This is not to say that royal commissions have had no usefulness in Canada. Many commissions have been praised for bringing to light facts that would otherwise remain ignored, for providing the basis for future policy consensus, and for generally developing progressive and fair policy recommendations.' Some of the widely agreed upon royal commissions successful in the above regard have been the Royal Commission on the Status of Women, the Bilingualism and Biculturalism Commission and the MacKenzie Valley Pipeline Inquiry. Part of the reason for the royal commissionlsuneven track record has to do with its ad hoc nature. There is no single best way to run an inquiry; every new inquiry starts anew with no staff, or even office furniture, equipped only with a copy of Harry A. Wilson's Conmissions of Inquiry: A Handbook of ~~erations.~As Alan Cairns, a veteran of the MacDonald Commission, explains, a public inquiry starts with a clean "bureaucratic" slate, no institutional memory, no
experienced staff or routines - just an impending deadline. The commission, once established, is composed of temporary staff, commissioners and researchers, the latter two often working part-time from different bases all around the nati~n.~ This fresh start is partially necessary to maintain the independence of commissions from government. This flexibility can be an advantage; the ability of inquiry managers to mould their research, staff, consultations and schedules (within limits) to the particular task at hand can provide powerful results. Commissioners are free to break from traditional governmental institutional and procedural restraints and to experiment in ways that would be
unthinkable in a government context.5 The tasks to which royal commissions are put to in Canada are highly variable, however, two of the tasks whic concern us here are, first, to offer an opportunity for public involvement in the policy process and second, to provide assessments of scientific and technological developments.6 Public inquiries are often created and defended on the grounds that they provide an open, extra-parliamentary (and therefore non-partisan) forum for an assessment of policy.' Despite this justification, royal commissions have no formal standards of accountability placed upon them. Public hearings are commonly required of inquiries but only in so far as they constitute a minimum legal requirement. The Inquiries Act, under which most royal commissions are created, outlines no principles for the holding of public hearings beyond authorizing the commission to subpoena witnesses. A publication widely regarded as the "Biblen of commission managementg devotes a total of two pages to the conduct of hearings and is primarily concerned with proper procedures, not effective parti~ipation.~In large part, the format, structure, content and timing of public participation is left up to the determination of the inquiry commissioner^.'^ Commissioners decide how open and accountable the process will be. Liora Salter points out that this discretion allows a significant potential to incorporate radical debate which would otherwise have no voice in the course of the normal policy process. 11 Royal commissions rarely stray beyond the traditional public hearing as their major means of involving the public. Although toll-free telephone lines, written submissions or letters have also been used, the hearing remains the most consistent and preferred method. The evaluation of public hearings as a technique of communication and involvement is dismal. Its consistent problems are linked to the difficulty of establishing two-way communication due to procedural rules, the lack of representativeness of intervenors and the lack of impact on final decision.I2 Other abuses to which the public hearing lends itself are: a habit of inadequate notification; the selective or elite involvement in the hearings; and an overemphasis on providing information rather than receiving it. 13 These problems are compounded by the tendency of royal commissions to be "passive with respect to generating their own participation."14 Rarely are distinctions made between types of intervenors, the types of testimony they may provide and the kind of forum different participants may require.15 Consequently, public inquiries in Canada can usually be characterized as open in the sense that there are no formal exclusions of participants but not public in the sense that participation is encouraged and tailored to the lay public's needs. 16 For a mode of participation that has been shown to be flawed and open to abuse, the public hearing is a surprisingly consistently used method. Adam Ashforth suggests that hearings continue to be a popular mechanism of public participation for inquiries primarily because of their symbolic dimension. The public hearing can demonstrate that the commission "serves the interests of all citizens and is open to their views." It forms part of the commission's purpose of seeking the "common interestu." While the above describes the historical trend with respect to public hearings, it is not a universal tendency as the Berger Commission showed. The Mackenzie Valley Pipeline Inquiry, chaired by then B.C. Supreme Court Justice Thomas Berger in the mid-70s, has achieved international attention and acclaim for its efforts in integrating in an equitable way, technical, political and experiential testimony, primarily through the use of innovative, unconventional and informal community hearings.'' Most importantly, the testimony from the community hearings regarding native culture, traditions, and knowledge of the area were allowed as evidence on par with the technical submissions from the pipeline company.19 One can regard the Berger Commission as the exception that proves the rule; while royal commissions possess a potential for developing effective public role in policy, it rarely occurs. Liora Salter attributes the standard inability of royal commissions to regularly develop adequate public participation mechanisms to two fundamental contradictions within the royal commission structure. First, commissions have the potential to incorporate radical debate and yet must present practical recommendations to government, governments which tend only towards reformist poli~ies.'~ Consequently, very real and significant limits are placed upon public participation in many ways, usually by taking a passive approach to generating participationz1and in adopting procedures that are perceived as unwelcoming to the general public. The second contradiction concerns the issue of wrongdoing, which all commissions deal with, including those that examine a potential harm should a particular decision be made. Because the question of liability is at issue, many parties (the potentially liable ones) conduct themselves as if it were a legal trial, despite the ambiguous legal status of inquiries. As a result, despite the formally equal status of all intervenors in the commission process, those with a pecuniary and/or legal interest in the issue tend to be given far greater weight. Advocacy groups, especially those with more diffuse memberships, suffer most as their claims, based on far-ranging, fundamental issues, are viewed as less legitimate than claims made on the basis of specific rights well established in our legal system (for example, property
rights) .22 Both of the above contradictions are resolved in ways that favour established patterns of decision-making in our societies. This pattern is reinforced by the inquiry's reactive mode of policy determination; inquiries are forced to react to conditions and circumstances not of their own making. As a result, inquiries often act best as mirrors to what is going on outside them." Furthermore, inquiries operate within a web of political institutions and agencies, departments and cabinets many of which have more decision making power than the inquiry itself.% The tendency is for these pressures prevail, and, as Richard Simeon notes, to perpetuate old patterns, Royal Commissions are appointed by governments in power. By their very nature, they can be no more than meliorative and reformist, rather than revolutionary. Members are representatives of established elites. Commissioners are also creatures of their times; perhaps the best that can be expected is that they collect, and then express, a shifting conventional wisdom, tilting it in one direction or other way but working well within the bounds of the existing order." The example of the Berger Commission also points to the central role of the commissioners or commission chair in determining the purpose and form of a commission's work. Thomas Berger allowed the public submissions and discussions to define the problem and the commission's mandate, which went far beyond the mandate given to it by government.26 Nonetheless, the contributions and influence of the native population would not have been possible without an explicit decision by Berger to facilitate this process. The issues which are at the root of many inquiry
participants' complaints - the procedures to be used, the inquiry priorities, and what questions are up for discussion - are those which are controlled by the commissioner^.^' Although the precise definition of the problem or crisis to be examined is often the most crucial decision made by a public inquiry, it is not regularly an open part of the commission work and not subject to public input and control. This decision has enormous implications for the kind of debate that will ensue, the type of research that will be sought out and the kind of proposals that will be given serious consideration as final recommendations. Any and all the improvements in the process of public participation will be countered by this basic concentration of decision-making power in a single person or a few people. With so much authority residing with the commissioner(s) , the government determination of a commissionlsmembership becomes a highly strategic decision. The potential exists for the government to make appointments on the basis of patronage or with a view to have some degree of control over the final report. This potential influence over commission work, when it proves successful, threatens the highly-valued "armlslengthn relationship between inquiries and governments. Another aspect of royal commission work which falls beyond the scrutiny of the public is the writing of the final report. Liora Salter, an observer of the drafting of inquiry reports, relates how this process, conducted in private, resembles more of a negotiation than an assessment. While the government is often present at the table "in spirit" as commissioners attempt to gauge what will be accepted and ignored in the form of recommendations, there is no equal presence for the various views presented by different public groups during the hearings. The publics' voices are lost. The lack of public accountability at this stage often manifests itself in the inappropriate use of comments from public submissions and research, out of context, to support the various commission recommendations.28 An evaluation of public participation in royal commissions requires a focus on the willingness of inquiry managers to share their decision-making prerogative with the public. For in the absence of mandatory accountability mechanisms, effective public involvement in royal commissions comes only from that most valued and effective of political resources - political will. 2.4 Criteria for Evaluating Participation The purpose of this section is to define some principles and criteria against which one can evaluate public participation efforts in decision-making. Assessing the impact of public participation in decision-making is a difficult task. Public participation and its influence are often an invisible part of the decision-making process, especially when decision-making happens in a kind of "black- boxN behind closed doors as occurs with the writing of a royal commission report. The sheer number of variables, groups and individuals attempting to sway policies in one direction or another make it increasingly difficult to gauge how any specific decision came about. Quantitative measures are no more helpful. Counting the number of heads at a public hearing, while certainly a measure of public participation, fails to capture many other important aspects of political influence. If one accepts, however, that "...the central activity of participatory planning is the process of exchange between government planners and involved participants."', then evaluation can be centred on the quality, the forms and the Opportunities for exchange. One can consider parts of the participatory process with respect to its accessibility, language used, discussion facilitated, etc.* This process model of decision-making, one that is concerned with the process of reaching the decision, evaluates decisions on the basis of fairness; all stakeholders must be given an opportunity to influence the final decision; trust and equity are central to successful participation. A public decision-making process which centres on complex technological advances and their consequences, both technical and social, can be both open and fair but can it also grant legitimacy to more than just the experts? As discussed above, science is a powerful source of influence in our society, yet not all citizens have equal access to it, or alternative sources of influence. If we want to benefit from informed public discussion, how do we ensure that the lay public enjoys some legitimacy in the process? Connie Ozawa refers to two variables that affect the ability of individuals or groups to actively participate in science policy decisions - access to technical information and expertise.3 Access to knowledge and the resulting ability to question the data used to legitimate decisions are essential components of power and influence; the old cliche that "knowledge is powerv has particular relevance in technically informed disputes. Information constitutes a critical tool for political influence throughout the entire policy process, from agenda setting to enforcement of the final policy.4 Without both information and expertise, the public ends up speaking a different language from the policy makers who make the decisions and the scientists who inform them. Consequently, for those who govern access to the policy process, the public's concerns appear irrelevant and ill- founded .s Both information and expertise contribute to the augmentation of two other variables that Ozawa identifies as central to group and individual legitimacy in policy making - voice and standing. Voice is defined as the "ability to express concerns and interests in language that is comprehensible and credible to the decision makersSn6 This "languagew would include basic scientific literacy. Standing is "the necessary legitimacy, conferred either explicitly through statutory language ...or less formally, through public consensus earned by generating widespread popular support."' In this case, the wider and more inclusive the definition of the problem, the more individuals or groups would be seen to have legitimate standing. Rene Parenteau, in his evaluation of environmental consultations in Canada, confirms Ozawals observations on the effect that the lack of access to information and expertise can have on public participation. Parenteau describes three stages of "filteringM that served to exclude certain participants and weakened the consultation processes he studied. At a first stage, ...the distribution of information concerning the question under consideration, command of the nature and validity of this information and familiarity with and access to the relevant documents are all factors which contribute to a preliminary filtering of public participation.8 This filtering is no doubt further exacerbated in issues requiring a scientific literacy. At a second level, ...the availability of time to follow the consultation process and the availability of means to prepare a brief or consult an expert constitute another system of filters.9 The "availability" of time and means often translates into a financial means to devote staff to an issue or to hire or develop internal expertise for the listed tasks. Public groups, most often volunteer or member-funded, lack this kind of financial means, individuals, more SO. And finally, ...p revious experience, recognized legitimacy based on professional expertise or representation, and the strategy of the board conducting the consultation, which wants to obtain maximum results, serve to filter public participants.10 In disputes involving scientific or medical issues, this kind of filter favours experts unless the board (or commission) in question decides to take action to level the playing field. Parenteau concludes that "participation will remain incomplete as long as it does not also embrace the material basis of the decision, the decision itself, managing implementation, and monitoring and follow-up instruments.I I Ozawa and Parenteau emphasize the tools required for effective participation (information, expertise, funds), however, these are often not enough. The process must also be one that allows and encourages wide-ranging public discussion to develop and to crystallize into well- articulated public policy proposals. This requires a particular kind of process where all kinds of public debate are welcomed and the differences between intervenors and their needs recognized. It would allow participants "many opportunities to 'come into their own1 as advocate groups through the process of speaking to an inquiry."12 Ozawals conditions described above do not explicitly require an equal commitment on the part of scientists and government administrators to adjust their expertise to include an understanding and appreciation of public knowledge. Ozawa stops at the need for intervenors to adopt the language of scientists and administrators. While this is necessary to a certain degree, there is also a need for administrators to understand and appreciate "layN discourse. Any decision-making procedure that combines expert and non- expert participants must be aware of the need to steer clear of jargon, rhetoric and deceptive manipulations of language. The privileging of scientific rationality to the exclusion of other "rationalities" results in a concentration of decision-making power and a variety of barriers to public involvement in the debate. In consideration of the above, several measures emerge against which one can evaluate participation efforts, each of which contributes towards the goals of citizen power and legitimacy in the decision making process. education/information: What kiqd of educational material or information is shared or offered to potential participants? What is the quality or level of completeness of the information? Is it offered in accessible language? In accessible formats? accessibility: To whom might the various opportunities for participation be reasonably accessible? Might these people be considered the relevant parties affected by the decision in question? Have various common barriers to access been addressed? resources: What resources are offered to various participants to help them become involved in effective ways? Do these resources address the inequities in knowledge and legitimacy held by various intenrenors? Resources need not only be financial, for example, a resource could be access to impartial experts. feedback/opportunities for exchange: What are the various opportunities for participation? How do they complement one another? Is there a continuum of participation opportunities or a series of single opportunities aimed at different constituencies? Is participation a one-way flow of information or is there opportunity for dialogue? Does dialogue occur between participants as well as between participants and commissioners? While the above measures will necessarily focus the evaluation on questions of process over outcome, the former is understood to impinge on the latter. All of the above measure are components of decision-making power by contributing to both voice and standing, or the degree of citizen power and legitimacy in the decision-making process. They are, however, indirect measures of the goal of greater public input, impact and control of science and technology policy. David Noble in an essay entitled, "Present Tense TechnologyN describes five goals for intellectuals confronting the myth of technological progress. These goals could equally address the ultimate goals for lay involvement science policy: ...to shift the burden of proof; to create the space to say no; to develop the means of resistance; to develop an alternative future that is moored in the present; to transcend the myth of the machine, the fetish for technological transcendence in order to make way for political opposition.13 3.0 NEW REPRODUCTIVE AND GENETIC TECHNOLOGIES AND CANADA
3.1 The New Reproductive and Genetic Technologies Reproductive and genetic technology can be defined as a range of medical interventions for increasing the effectiveness of contraception, overcoming infertility and reducing the risk of genetically transmitted deformities.' The new reproductive and genetic technologies, or NRGTs, in question include sex determination, prenatal diagnostic screening, cryobanking of sperm and ova, assisted insemination (AI), frozen embryo storage and transplants, in vitro fertilization (IVF) and its variations (GIFT and ZIFT), cloning and parthen~genesis.~Although they have been labelled new, the technologies are already in wide use around the world. IVF, embryo transfer and other techniques began as part of livestock breeding programs before they * were applied to human reprod~ction.~~ouise Brown, the first "test-tube babyN is now 15 years old. In Canada, the first IVF births occurred in 1985 at two clinics in or onto;' by 1993, 15 centres were offering IVF across the countrye5 Indeed some of the new technologies are neither new nor involve complicated technology. A1 was widely used during World War I1 and some form of surrogate parenting has been known since biblical times.6 The Ifnewffelement in these practises consists of the increased involvement of the medical professions, the availability of "quality controln with screening devices and the separation of sexual ; intercourse from procreation. Many have sought to explain the rising popularity of infertility treatment centres in the Western world. There has been a significant decrease in the number of children available for adoption, the result of better birth control and abortion services as well as decreased social costs for teenage mothers wanting to keep their children.' While many have also cited an increase in the rate of infertility, this is under some dispute due to the inadequacy of early data and the changing definitions of infertility.' Infertility,
once defined as the inability to conceive within 5 years,
was reduced to 2 years and, in the United States and some parts of Canada, the accepted time frame is now one year. The Canadian national infertility rate, using the two year
definition, is 7 percent of couples (as opposed to individuals)'. A significant proportion of diagnosed infertility or conception difficulties in women are due to past medical interventions: the Dalkon Shield, intra-uterine devices, misdiagnoses of pelvic inflammatory disease (PID), untreated sexually transmitted diseases and interventions into pregnancy such as thalidomide and DES (diethylstilbe~trol).'~In addition, there is evidence to suggest that exposure to environmental, occupational or chemical factors also contribute to infertility." NRGTs are typically administered to women, not men. Consequently, the development and proliferation of NRGTs has been met with growing concern and opposition from those working within the women's health and feminist movements; these groups have been among those undertaking critical work in this area. This body of research kas made considerable contributions towards revealing the social and economic influences on the development of these technologies. It is argued that these influences, when combined with already existing social inequities, have overridden any development of NRGTs in a direction that might have prioritized the interests of women's health.'* Feminist analyses have sought to counteract the popular notion that NRGTs were developed to help infertile women by demonstrating an alternative interpretation of the development of reproductive technologies as a "professional resource," where the needs of the patient (the woman) are not primordial (or even present).I3 The result is technology designed to serve a doctor's and an industry's, not a patient's, needs. The medical-industrial control of NRGTs has been a primary concern for feminist analyses and the way in which it decreases the control and autonomy of individual women and structures choices over their reproductive health.14 A critical appraisal of NRGTs would not be complete without an awareness of the broader context within which these technologies have developed, a context where there exists a firm scientific acceptance of the importance of genetic research and genetic intervention for future human health. This scientific consensus is supported by increasing governmental financial commitments to genetic project^.'^ The Human Genome Organization (HUGO), an international network of scientists working to identify all components of the human genome, is the most concrete evidence of this phenomenon.16 The extent to which this scientific assumption has penetrated popular culture can be seen in the frequent predictions, reported by the mass media, of our impending ability to ward off disease by controlling and replacing "defectiveu genes.'' The use of reproductive technologies, by releasing the embryo from a womanls womb for observation, make genetic experimentation and intervention possible on early stages of human development. 18 Other specific concerns that run through many feminist critiques have included: the inadequate assessment of superovulatory drugs routinely used in conjunction with NRGTs; the lack of independent and non-directional counselling provided; the implications of widespread use of prenatal diagnosis for social attitudes towards the people with disabilities; and how the delivery and administration of NRGTs reproduces and exacerbates the paternalistic pattern in which medical care has been delivered in the past for women. Feminist critiques of NRGTs has been labelled anti- technology for their wholesale rejection of the techniques without an acknowledgement of their potential benefits.19 Given that there are currently no alternatives to NRGTs for infertility "treatment", it is perhaps not surprising that the discussion has been limited to pro- and anti-technology positions; the range of technological choice affects the scope of debate. Nonetheless, disputes over technology are not reducible to anti-technology versus pro-technology. These disputes are more accurately described as disputes over the social control of technology: Who controls technology and technological change? To whose benefit? What are the consequences of this control? Feminist critiques of NRGTs have focused on answering these questions from the standpoint of women in a patriarchal society. With a critique of NRGTs firmly established, there is more work from feminists looking at how NRGTs could be developed and organized in a way that might increase women's reproductive autonomy and improve health. These visions usually include proposals for greater control by women over the technologies, for a more balanced emphasis on infertility prevention, and finally, for an engagement with the broader social inequities which affect women's lives and which limit positive change in the use of NRGTs.20
Other critics, in evaluating more generally the medical model of health, have pointed to a key tenet of modern
medicine - intewention. Medical training teaches a preference for intervention over inaction. This training generally leads physicians to overemphasize the benefits of treatment and to underestimate its risks; doctors may not even see that an intervention is causing more harm than the initial symptom.21Studies have found that given the fullest information, patients will show much less tolerance for risk than their physician^.^^ Patients, however, rarely have this opportunity to go beyond their doctor's intepertation of their condition. Even counselling, one of the main forms of information dissemination for prospective infertility patients, is rarely independent from the clinics it is meant to service and as a result, shares the medical intrepretations of infertility and its appropriate treatment. Not surprisingly, the range of information and choices offered patients is significantly narrowed.23 In the area of reproductive medicine, infertility is constituted as a pathological medical category. As a disease model, it contributes little towards understanding childlessness to which it accords only biological significance. Women's emotions and experiences are significant only in so far as they can inform the medical indications for treatment. This classification justifies and calls for medical intenrention, indeed, it constitutes an imperative for medical intervention, as all disease requires treatment.24 Alternative views of infertility offered by those outside the medical community suggest a more balanced approach in which infertility would be considered analogous to a disability, requiring a combination of social and medical actions.25 . The medical community also possesses a particular view of disability. For doctors, disabi1it.y is seen as an essential dysfunction, as an abnormal biological condition that cannot be solved through medical inte~vention.'~ Accepted medical school curriculum frames disability and the lives of people with disabilities in terms of deficiencies. This view becomes significant when prenatal diagnostic tests purport to inform a woman of her risk of bearing a child with a disability. Parents faced with a choice to carry to term or to abort will often turn to their doctor for advice, to "informn their choice. Views from the disability rights movement express doubt about the capacity of doctors to provide such information. Many question whether doctors, speaking from a biological perspective, can appreciate the quality of life possible for the disabled today. Too often, "informed choice" consists of an assumed automatic abortion." Again, the debate does not necessarily concern whether the technologies are inherently good or bad, but whether their effects can be beneficial given the way in which they are controlled. The medical industry also plays a pivotal role in the new reproductive technologies. There has been significant commercial interest in NRGTs since their inception, particularly on the part of large pharmaceutical companies who stand to benefit considerably from the extensive use of superovulatory drugs during the IVF process and other procedures .28 Although precise global figures of the economic interests in NRGTs are difficult to obtain, some partial figures can give us a good idea. If we take in vitro fertilization as an example, the cost of drugs for one cycle of IVF (and the vast majority of women need more than one cycle) is about Cdn$ 2000. Ares-Serono, one of the leading firms in the area of fertility drugs used for IVF, recorded revenues of $260 million internationally in 1991 from the sale of these drugs.29 One IVF specialist, Dr. Bernard
Lunenfeld, estimated in 1989 that the potential market in the industrialized world for fertility drugs was 10 million women, joined every year thereafter by an additional
7OO.OOO .30
New reproductive technologies and the interpretation of their value and significance are under dispute. Competing visions of the development, uses and need for NRGTs come from the medical fields, scientific research communities, women's advocacy groups and religious organizations. While each strives to have a voice in the discussion, each is not equally equipped to do so. As a medical and scientifically- informed issue, public "expert" status is more easily accorded representatives of the medical and scientific professions. Groups offering alternative interpretations are constituted as challengers to these powerful social sources of legitimacy and expertise. 3.2 New Reproductive and Genetic Technologies Enter the Canadian Policy Agenda In many cases of science and ethics controversies, the policy or ethics evaluation occurs only after the science has already progressed in a significant way, experiments have gone ahead and results documented. This reactive mode of policy making can impose limits on the kind of policy options readily considered. The Royal Commission on New Reproductive Technologies fits into this general category of inquiry. Scientists and researchers working with NRGTs had established clinics and had received widespread media coverage by the time the first public inquiries were held. It was only after the birth of the first baby by in vitro fertilization in 1978 that the international debate began with the British Warnock Report in 1984.' In Canada, the first clinic for sex pre-selection opened in Toronto in 1987;' the Royal Commission on New
Reproductive Technologies was announced in 1989. Requests for a Canadian royal commission began as other Western nations held similar inquiries and international conferences were held.3 The strongest push came from a coalition of concerned feminists and scholars. (Most
Canadian public inquiries, both recent and pre-World War 11, have been called in response to public interest group demandsS4)This pressure group, which called itself the Canadian Coalition for a Royal Commission on New Reproductive Technologies, was a volunteer group funded by donation. It embarked in 1987 upon a lobbying campaign which included canvassing federal MPs and Senators and holding press conferences and public talks to call public attention to their lobby.5 The Coalition had chosen a royal commission over other possible alternatives for three primary reasons: first, it would provide a public and media focus for the issues and create the opportunity for public discussion; second, a royal commission could allocate funds for badly needed research; and third, a royal commission would have the power to subpoena people (doctors) and documents (IVF, A1 and
other fertility clinics records) .6 In addition, the 1970 Report of the Royal Commission on the Status of Women had generally been regarded as a watershed event in the Canadian women's movement.7 The Coalition had a very specific model for the royal commission it envisaged. They developed a mandate for the inquiry which featured a directive to focus on the social implications of the technologies. Also included in the mandate and in their correspondence to ministers was an emphasis on the educational role of a royal commission. Part of this projected educational capacity included the release of preliminary research to enable the public to respond to the commission in an informed a way as possible.' Finally, the Coalition made very specific demands with respect to the membership of the Commission. In recognition of NRGTs focus on women, it requested that women comprise a majority of the commissioners. To balance the medical and legal monopolization of NRGTs with a social perspective, the Coalition asked that the commission chair be "a woman whose expertise and sensitivities lie with the social rather than the legal or medical implications of these new reproductive technol~gies.'~~Further, the Coalition asked that commissioners not be drawn from the traditional pool of doctors, scholars and lawyers but be lay people with "a history of concern with issues of reprodu~tion.~~~ The Coalition seemed to implicitly recognize that were a public inquiry to seriously take on the more fundamental questions of technology development it would require a public discussion on these technologies where the assumptions of the medical and industrial establishments could be safely questioned. Their recommendations reflected a concern for a broad interpretation of both the problem and its solutions. Inquiries in other nations had not generally enabled this kind of discussion." The British Warnock Commission, the first on the subject, has generally been held up as a reference and model for similar committees. The Warnock inquiry's consultations were very restricted; Warnock commissioners did not hear from individual women, women's groups, or infertility treatment centres." The federal government announced the formation of a Royal Commission on New Reproductive Technologies (hereafter, the RCNRT or the Commission) in its throne speech of April 1989, almost 2 years after lobbying began.13 While a royal commission is meant to be independent of government as it seeks to evaluate the widest variety of policy options, there are two avenues of influence for the state on a commission~swork: the mandate and the membership. Both lie exclusively within the domain of government prerogative; neither is subject to a transparent process or public input. 3.3 The Royal Commission on New Reproductive Technologies A) Mandate The mandate of the Royal Commission on New Reproductive Technologies announced October 25, 1989, was to, ...inquire into and report on current and potential medical and scientific developments related to new reproductive technologies, considering in particular their social, ethical, health, research, legal and economic implications and the public interest, recommending what policies and safeguards should be applied . 1 Meant to operate at arm's length from the government that appointed it, an inquiry is formally accountable only to its mandate.2 Given that the same problem formulated in different ways can implicate a wider or smaller scope of legitimate stakeholders, the definition of the problem to be investigated can have important consequences for parti~ipation.~Harry Wilson, a privy Council veteran, advises those responsible for developing a commission~s terms of reference to be as specific as possible to avoid allowing "the commission to wander afield into tangential matters, causing complications and de1ays.0~He further recommends that senior officials responsible for calling the commission pre-brief the commissioners to make clear the intentions of the terms of reference.5 Clearly, the mandate can be a powerful influence on any commissionls work. It is not, however, routinely open to public discussion. Nonetheless, the influence of the mandate can be overstated. A mandate is open to interpretation. Commission chairs or commissioners are free to extend or narrow their mandate in whatever way they see fit. Certainly, Thomas Berger took considerable liberties in interpreting his mandate to inquire into the development of a pipeline through the Mackenzie Valley, far beyond what the government had originally intended. Here, as in many other commission matters, the choice lies with the commission chair or commissioners. The mandate of the RCNRT represents an exceedingly broad mandate for which there are few precedents. The mandate included directives as to what groups would be considered specific stakeholders in its work: examine in particular, implications of new reproductive technologies for women's reproductive health and well- being ... and the status and rights of people using or contributing to reproductive services ...and the impact of these services on all concerned parties, particularly the children.6 This mandate does suggest some limits to the kind of policy consideration expected from the Commission. Salter and Slaco, in their examination of public inquiries in Canada, created a category of inquiries whose task it is to examine the necessity and desirability of developing a technological application in a certain way; this kind of inquiry must often determine or estimate a technology's impact and its properties, both of which may not be known.' These inquiries usually approach their work guided by the following kind of general question: "how might this technology be regulated, distributed or accessed by all Canadians?" This category of inquiry rarely identifies its main research question as "whether or not Canadians want this technology." This oversight is significant in that most new technologies are developed without the benefit of public input.Qohn McKinlay, in his research on the typical career of a medical innovation, observed: ...public acceptance is placed after the stage of professional and organizational adoption, despite the frequent assertion by these interests that, in adopting an innovation, they are simply responding to public demand. The mandate of the RCNRT directed the commission to consider a variety of technologies, to consider them in the "public interest" and to recommend "what policies and safeguards should be The implication for the Commissionls work is that the central question is not "whether or not Canadians want these technologies." Instead, the main question follows the historical tendency suggested by Salter and Slaco - to focus on the best way in which to distribute and regulate the technologies as a pre-existing, accepted reality. Already, this suggests a limit to policy alternatives that would warrant consideration, specifically, the possibility of a moratorium or banning of these technologies. his specific alternative was one that had already been put forward by one Canadian women's groups and would be again during the Commission's hearings2 While the mandate may have included within it a preferred interpretation, the actual task of interpretation remains in the hands of the commissioners. The position of commission chair (and the only full-time commissioner position) for the RCNRT had gone to Patricia Baird, a UBC geneticist. This decision was contrary to the Coalition request for a non-biomedical or legal expert to oversee this inquiry. The Coalition was opposed to giving control of the inquiry to a representative from one of these groups because both benefit financially from reproductive technologies and, in the case of biomedicine, share the medical view of the purpose of these technologies. A person who comes out of the biomedical community ...is likely to take a very biomedical approach to these problems. From this point of view, these (technologies) are seen as therapeutic, as important for dealing with health problems. l2 A biomedical assessment of these techniques might grant less legitimacy to, or fail to consider, those alternatives that do not share a predilection for treatment and a benign view of intervention. While simply identifying the chair with her biomedical background is not enough to dismiss the possibility of a broad based approach, her public comment when appointed would suggest that her approach was one that did not question the existence of these technologies: These new technologies provide new tools and we must make sure to use these tools wisely to the benefit of the people. I3 The mandate proposed by the Coalition contained specific instructions for the commission's public consultation and education roles. The commission shall actively seek input from women's groups, health groups, fertile and infertile women and men, people who have already been involved in these techniques and arrangement, legal and medical practitioners, and a cross-section of the population at large. Public hearings shall be held in every province and territory...it is an important part of the mandate of the commissions to communicate their findings of current techniques and arrangements in the broadest possible manner. 14 The RCNRT1s mandate, in keeping with the tradition of Canadian public inquiries, contained no directives as to public involvement or education.
B) Membership Appointments to any royal commission constitute a strategic political decision; the specific membership of an inquiry can serve a variety of goals. Members are a combination of both the relevant experts and llrepresentativesilof those interests considered germane to the subject.15 In Canada, there is an additional expectation of regional representation, especially with respect to Quebec francophones,Ibas well as increasing expectations of gender and racial parity. Membership decisions are aimed at increasing a commission's legitimacy by having members represent the social divisions they are asked to transcend." The commission Operates as a microcosm of a pluralistic democratic society, as representatives of different interests or societal groups come together and through their deliberations, work towards a view of the
common good. IS According to the details given in the official commissioner biographies published by the Commission, the membership showed the traditional concern for representation from all regions of Canada and francophone Quebec.19 The appointments also demonstrate to what degree NRGTs had been accepted as an issue that affected women in a significant way; the ratio of women to men commissioners was 7:2. A similar admission had not been made on the issue of race; no representation was provided for Canadian visible minorities. The appointments to the RCNRT show a concern for conventional "expertn representation, in this case, favouring the medical and legal fields. In addition, four commissioners were listed as having done work in bioethics, a branch of philosophy and law. Of the original seven appointments, two, including the chair, were from the medical field (Dr. ~atriciaBaird, Dr. Bruce Hatfield), 2 were lawyers (Martin Hebert, Maureen McTeer) and 3 held PhD's in the social sciences or humanities (Grace Marion Jantzen, Suzanne Rozell Scorsone, Louise Vandelac). Of the additional two appointments made in August 1990, one was awarded to a lawyer (Bartha Maria Knoppers) while the second was awarded to a former high school teacher and active board member in the Toronto area (Susan McCutcheon). Only this last appointment seems to follow the Coalition's recommendation of appointing lay persons. In conclusion, while the mandate and choice of commission chair may indicate a preferred course for the Commission's work that would have favoured the biomedical community, these two factors alone do not determine the Commission's fate. The bulk of the responsibility for interpreting and carrying out the government's intentions lay with the commissioners, including the option of sharing the task of interpretation in a public process. Undoubtedly, commissioners would be faced with a considerable number of choices as to the direction and the actions the RCNRT would take and the way in which it would structure public participation. 3.4 The Work of the Royal Commission on New Reproductive Technologies This section will provide an overview of the work and administration, with the exception cf the public participation program, of the Royal Commission on New Reproductive Technologies (RCNRT) over the course of its four year mandate. The RCNRT was initially given a two-year time span to complete its work with a reporting date of October 1991. Not surprisingly, given the breadth of its mandate, this deadline was quickly extended by a year. Two more extensions followed with the Commission finally reporting on November 15, 1993. Its original budget of $24.7 million was accordingly increased to $28.2 million' with the final cost placed at $29.5 million.2 In its Final Report, the Commission stated that it had set three broad goals for its work: first, to provide direction for public policy in the immediate future and to establish a framework to provide a continuing capacity to deal with NRTs; second, to leave a legacy of Canadian research and experience; and third, to enhance public awareness and understanding of NRTs and to encourage public participation in determining the future of these diverse technologies and their place in Canadian sociecy.3 Guided by the terms of its mandate, the Commission organized its research plans into four areas, each managed by a different working group within the Commission:
(1) the prevalence, risk factors, and prevention of infertility (2) methods of assisted reproduction (3) prenatal diagnosis and genetics (4) research involving human zygotes and the use of fetal tissue. The Commission made efforts to include researchers from as many different disciplines as possible. In all, the
Commission funded more than 130 research projects, conducted by over 300 researchers from almost 70 disciplines.4 These research studies were published along with the Final Report.
A consideration of the work of any royal commission must also take into account its management. According to one veteran of a recent royal commission: At every stage of an inquiry's life, whether it involves the definition of the policy task, the weighing of alternatives or the communication of its findings and recommendations, the quality of management will determine the success or failure of the commission.5 For the RCNRT, management issues would prove to haunt its entire mandate through to the release of its Final Report. Seven commissioners were initially appointed in
October of 1989. Four of these original members, Bruce Hatfield, Martin Hebert, Maureen McTeer and Louise Vandelac, would sue the federal government and the chair, Patricia Baird. They maintained that the actions of the chair had prevented them from being participants in the inquiry and that the federal government had contravened the provisions of the Inquiries Act under which the Commission had been createde6 A reading of the documents submitted to the Federal Court of Canada in support of the suit demonstrates that internal problems began early. A letter sent by the four commissioners to the chair in June 1990, eight months into their mandate, described their concerns about not being included in decisions around the Comrnissionls work, the apparent lack of any research program or priorities, the lack of a comprehensive communications or consultations strategy and the lack of public awareness around the Commissionls existence. The commissioners put both the chair and the head of the Privy Council Office (PCO), on notice that they would no longer attend Commission meetings until their concerns were acknowledged and action had been taken
to remedy them.7 Although the Canadian government holds a traditional arm's length relationship with royal commissions, on August 28 1990, in an apparent direct intervention, the PC0 appointed two new commissioners, thereby resolving problems
of quorum at Commission meetings. In addition, a new Order- in-Council, amending the original one that created the RCNRT, was issued, explicitly awarding all decision-making power to the chair.' Internal problems continued with the four commissioners citing lack of consultation on several matters including the first request to extend the mandate, the structure of the public hearings and the selection of contracted researchers. Also cited was a refusal to share infonnation over the costs of the public hearings, the costs of individual research projects, the composition of the research program as a whole and many other issues.9 The difficulties culminated in the suit laid in Federal
Court on December 6, 1991. Two weeks later, the four commissioners had their appointments revoked by the federal g~vernment.'~According to a representative from the Privy Council Office, the action was taken, nreluctantly...because it felt the commission would only be able to complete its work if the four commissioners in question were rem~ved.~" Advised that the loss of their appointments denied them standing for legal action, the four commissioners dropped their suit in February 1992.12 The remaining five commissioners worked with the Commission to the end of its mandate. Serious complaints around Covmission management were also heard from staff members. Margrit Eichler, a sociologist and member of the Coalition for a Royal Commission on New ~eproductiveTechnologies, surveyec all Commission staff and researchers. Respondents to her questionnaire relayed their experiences of an atmosphere of suspicion, anti-feminism and general fear.13 The Commission was not only beset by problems of governance but was also the target of criticisms about the substantive nature of its research. The Coalition for a Royal Commission on New Reproductive Technologies re- established itself after the firings14 and acted as a watchdog, focussing its attention on the Commission's research activities. Denied information on the specific details of research being conducted, the Coalition made a successful freedom of information inquiry and received a summary of all contracts awarded by the Commission between
November 1989 and October 1991. It charged that the research program was poorly managed and misdirected and released an analysis highlighting one contractor's conflict of interest and areas which the Commission was apparently not investigating.15 The Commission subsequently denied the charges, citing the out-of-date nature of the Coalition's information and the availability of more recent information on the Commission's research program.'(' Nonetheless, Canada's largest women's group, the National ~ction Committee on the Status of Women (NAC) decided to boycott all future Commission consultations.17 The Commission was subject to repeated requests to make available information on the names and affiliations of researchers it had contracted with, the titles of its projects and their associated costs. The Social Science Federation of Canada joined the Coalition in calling for the release of more detailed information. Maintaining that the information requested was llbasic procedural information that is routinely available in scientific inquiry in democratic c~untries,"'~the Federation called upon the Commission to demonstrate its stated commitment to peer review and openness.19 Some of this information was eventually published in August 1992 when the research program had been ~ompleted.'~The Federation again protested to the Commission, indicating that the most important pieces of information had not been released; no further information on the research program was releasedS2' The Commission also faced opposition to its research program from some of those with whom it had contracted to do research. Eichlerls survey also revealed how research contracts were worded to limit the scope of inquiry and that the content of research was subject to substantial changes by Commission staff." Anne Pappert, a writer on NRGTs, sued the Commission for copyright infringement. She maintained that Commission staff had changed factual information in one of her reports without her permission." Another researcher had similar problems; the researcher's draft was changed in such a way that the researcher considered it no longer faithful to the data."
Some of the problems around the research program are certainly attributable to the unique challenges of public inquiries - to embark upon a major policy and research program with an entirely new staff, no institutional memory and commissioners and researchers working from different bases all over the nation.25 In addition, the RCNRT operated without a permanent research director until August of 1990.'~ The first research director left her position after only three weeks, after which an executive search firm was engaged at a cost of $55,000.~'Nonetheless, the research program structure (four task forces organized around different parts of the mandate) had already been put in place by April 1990.28 Even with a less confrontational management of the research program, the Commission would still be entering a highly charged field. Feminists and sociologists of science had already forged a critique of NRGTs, IVF clinicians were eager to shed the "experimentalM label and ethical debates had begun in various sectors of the population. These groups and others would certainly look to the Commission~sresearch to find evidence of a faithful representation of their arguments. The dynamics of these disputes carried over into the Commission research program, particularly in how researchers were selected. Internal arrays of the research program identified research topics, with some subdivided into a need for "one mainstream study, one feminist study."29 (The documents do not define the terms
"mainstreamu and feminist.") With the publication of the RCNRT1s Final Report and its Research Volumes, much of the research is now open for evaluation. The merits of individual projects, the overall research program and the way in which the Commission weighed the evidence before it to reach its own particular assessment can be assessed by others. 3.5 The Recommendations of the Royal Commission on New Reproductive Technologies The Final Report of the Royal Commission on New
Reproductive Technologies, Proceed with Care, included 293
recommendations outlined in over 1200 pages. The purpose of this section is not to provide a detailed analysis of the RCNRT1s Final Report but to broadly sketch its recommendations with their relationship and implications for the lay assessment and management of technology. The Commission's Final Report highlighted the input it received from Canadians as well as academics. Interspersed throughout the report are quotations from the transcripts of the public hearings, information meetings and research studies. Many chapters of the Report included sections on the "Views of Canadians," derived from one or more of the Commission surveys or the public hearings. Many of the Report's recommendations were a result of its stated commitment to promote "evidence-basedmedicine."
The term itself is a rather wry admission that 30 to 80 percent of all medical therapies have not been evaluated'. This trend is particularly pronounced in the field of gynaecology/obstetrics; one researcher has commented that the initials G/O could stand for "GO ahead without evaluation!fi2~vidence-based medicine was identified by the Commission as part of its overall framework for decision- making. 3 The Commission defines evidence-based medicine as medical practice based on data and assessment of whether procedures or treatments are of benefit for their intended purpose.' Treatments must be proven through a process of randomized clinical trials that would be funded by the provinces; before treatments are proven, they cannot be made generally available. The approach is described as a more "rational and equitable way of allocating public health dollars. n5 Evidence-based medicine can be considered part of the larger field of technology assessment, a technique which tries to identify risks from new technologies before they are introduced. Both are expert-centred processes. Evidence- based medicine does not significantly challenge or alter the current organization and management of science. It attempts to make science work as it should in theory, evaluating knowledge and techniques on the basis of evidence and not for political and financial expediency. As the Commission foresees evidence-based medicine: ...knowledge gained from science develops in such a way that is beneficent, along directions most likely to have human and advantageous consequences.6 Institutionalizing methods of technology assessment raises questions about who makes decisions and how. For example, how is a therapy's "intended purposev determined? Or, when and how do techniques qualify as therapy and when must they remain research? In acknowledging this issue, the Commission held that the current systems in place - research and ethics boards of universities and hospitals, informed consent from subjects and not-for-profit status - were adequate. This approach does not question the way in which the current system excludes the public and patients from decisions about research. Ethics boards and committees have generally been shown to have a very limited view of what constitutes lay and community participation; when it is included at all, it is usually interpreted as being one or more representatives from professions other than medicine or from a restricted social stratum.' Informed consent is acknowledged by the Commission itself to be primarily a legal concept designed to protect practitioners and clinician^.^ And finally, the conventional clinical trial carries with it another set of ethical concerns around patient autonomy, and the conflicts between doctors1 therapeutic and research obligations.9 When clinicians, government policy makers and researchers continue to make decisions about research priorities and what constitutes evidence, patients remain in a secondary, recipient role. The Commission did not see the need for an expanded capacity for patients, characterizing their role as one of "informed This role is one akin to that of the consumer in the market; armed with the fullest information about the choices available, the consumer selects the product best suited to his or her needs. similarly, the Commission presents the patient as being able to decide her own treatment based upon full knowledge of all the options available." With evidence- based medicine, the Commission contends that, "patients (can) be confident that the care they are receiving is based on good inf~rmation."'~ While there is a need for the medical system to move beyond informed "consent" to informed Nchoice,Nthis model continues to limit patients to being recipients of knowledge, treatments and information. "Choicev is limited to the end portion of an entire continuum of decisions beginning with research funding priorities and clinical trials. The RCNRT identifies patient decision-making as separate from scientific decision-making, although the former is contingent upon the latter for both the range of choices offered and for full and adequate information. The
RCNRT makes no recommendations for establishing a flow of information from patients to the medical system that is not first filtered by a doctor or clinician. Other models for lay involvement in medical and scientific research have been suggested. These models seek to make patients equal partners in research, to "shorten the distance between the observer and subjects Techniques such as the mutual validation of data test results not just by tati is tical methods but in terms of the subjectst experience of reality. In this way, patients can become "active subjects of research, involved in the production, uses and evaluation of the knowledge relating to their own experience. 11'4 Abby Lippman, a Canadian epidemiologist, calls for cooperative action-research projects wherein women's groups and groups of people with disabilities would be involved in identifying not just the need for clinical trials, but the way in which they are conducted and the risks and issues they identify for study.'' These kinds of collaborative research endeavours have already started. In Britain, women's groups worked with organizers of a trial of a prenatal diagnostic test (CVS) and endorsed the study.'' More recently, in Canada, a conference on breast cancer research brought together survivors of breast cancer, researchers and doctors to jointly discuss research priorities on the disease. 17 Models of patient involvement do more than widen the normal scope of scientific research; they directly confront the institutional control and management of science. As discussed above, public assessments of science include perceptions of the patterns of control and organization of science. The Canadian CVS study, while lauded as scientifically sound, was criticized by many women for denying general access to the technique during the clinical trial period. Women saw themselves as having to fight for access and control with the doctors and researchers organizing the trial." Similarly, when the RCNRT's Final Report recommended that access to IVF be restricted to women with very specific kinds of medical problems, spokespeople for infertile couples protested; freedom to choose was pitted against the needs of the c~llective.'~Lippman suggests that this conflict can be mitigated by directly addressing the question of control and involving patients and other concerned groups in the process of identifying the needs and plans for any clinical trial.20
Another Commission recommendation which has important implications for public participation is the recommendation for a National Reproductive Technologies Commission (NRTC). This regulatory body would be responsible for the monitoring, licensing, establishment of standards and coordination of research on NRGTs. It would hold public hearings, with the possibility for third-party interventions as well as promote public awareness and education. Public representation would be provided for through the membership of the 12-member Commission and its subcommittees. Half of all its committees would include women as well representatives from a variety of interested groups not restricted to medicine and science.21 The NRTC represents a potentially significant step in democratizing the management of science and technology. The composition of the new commission acknowledges the need for other kinds of knowledges to supplement scientific data. Should the NRTC prove to be implemented and successful, it could provide a model for decision-making in other areas of the science and medical establishment. The history of regulation in Canada, however, suggests a cautious optimism. Liora Salter and Debra Slaco, in commenting upon the recommendations by public inquiries investigating the development of technology, distinguished two approaches: the "Yes, but" response and the "No, not unlessN response." While the difference may seem semantic, the impact of each is quite different. The first response, "Yes, proceed with the technology/development, but only under certain condition^,^ gives a green light to the technology given that regulatory agencies possess little or no means to enforce their conditions of license, or are at least reluctant to use them.23 The second possible response is, "No, the technology/development may not proceed unless certain prior conditions are met." This allows a regulatory agency to stage a series of approvals, each contingent upon work already completed. The burden of proof is shifted to the mandating government or sponsor of the technology to establish that the conditions have been met.24
A royal commission does not possess the power to hold back approval of a technology or development; only the mandating government or ensuing regulatory agency can do SO. The nature of a royal commission's response, however, can have important implications for the eventual power of a regulatory agency to enforce its conditions of license. Given that these conditions of approval are frequently drawn from the concerns expressed by advocacy groups during a commission's lifetime, the response has important consequences for the potential of advocacy group goals to prevail over the technology proponent^.'^ The RCNRT, as the title of its Final Report, Proceed with Care, indicates, generally allows NRGTs to proceed under certain conditions. It is unclear from a reading of its recommendation for a regulatory body how conditions of license will be met and enforced. The suspension of licenses is suggested as an avenue, however, Canada's experience with the CRTC, a body similar to the proposed NRTC, shows that this is not an avenue favoured by Canadian regulatory agencie~.~'Also not specified in the Commissionfs Final Report is the relationship between public involvement at NRTC hearings and NRTC decision-making. The fate of the NRTC will have to be seen.
A co-issionfs final report constitutes the end result of this vcalculation of the possible;" it offers what is practical - "what can be done about what we knowu." This calculation is certainly a result of negotiation between the needs and demands of different societal groups. The RCNRT's limitation of patient involvement and control to a consumer model suggests that the relative strength of lay voices it heard during its mandate was not enough to result in greater sharing of decision-making power. The following chapter will examine the ways in which the lay public was allowed to participate in enlarging the scope of political discourse around NRGTs and in affecting the range of acceptable alternative models presented to the Commission. 4.0 THE PUBLIC PARTICIPATION PROGRAM This chapter will examine in detail the public participation program put in place by the Royal Commission on New Reproductive Technologies. The program has been divided into 5 broad areas and are presented roughly in order of their occurrence:
i - Initial efforts - initiated to gauge public knowledge and attitudes. These efforts included polling and a "search" conference.
ii - Education - designed to increase public awareness and to encourage involvement in the Commissionls activities. The three elements of this program included public information kits, publications and panel discussions.
iii - Public Hearings - designed to formally obtain public views and opinions in an open forum. iv - Private Sessions and other Private Communications - consultations designed to hear from those with personal experiences with NRTs who did not feel comfortable or were otherwise unable to discuss them in a public forum.
v - Selected Stakeholder Consul tations - consisted of a second effort to obtain views from groups who were not heard from during the public hearings or from whom the Commission needed to hear more. 4.1 Initial Efforts Introduction Any royal commission, although formally assigned its task through its mandate, must interpret its mandate and prioritize its tasks. The RCNRT did the same: "Our mandate is so broad that one of our first steps must be to decide what the central issues are, then focus on them."' This process of interpretation can set the context for and establish boundaries around future commission work. Public interventions can be invited at this early stage to discuss the scope of the inquiry, its timing and other organizational issues.? participation at this stage can prevent an overly narrow and expert-centred approach and help to develop an atmosphere of an open and transparent decision-making process.
A) Surveys polls and surveys are commonly used by a variety of organizations as a means of quantitatively measuring the opinions and views of their clients, constituents or potential customers. Similarly, the Royal Commission on New Reproductive ~echnologiesmade Use of surveys as part of its mandate to develop recommendations for dealing with NRGTs in Canada. The Commission conducted four surveys designed to measure, "Canadians' familiarity with and values in areas related to new reproductive technologies.u3 i) "Reproductive technologies - Qualitative research" - a telephone survey by the Angus Reid Group. ii) "Social Values and Attitudes of Canadians Toward New Reproductive Technologiesw - a telephone survey combined with a written questionnaire on a smaller sample conducted by Decima Research. Also included focus groups with Aboriginal peoples and members of other racial and cultural minorities.
iii) Canada Health Monitor - telephone interviews as part of an omnibus health survey conducted by Price Waterhouse. iv) Survey of Ethnocultural Communities - survey of 100 community representatives from ethnocultural and women's communities conducted by Shyla Dutt. The Angus Reid poll, conducted in May 1990, was in fact the first survey conducted for the RCNR? for a total cost,
including secondary analysis, of $246,771.' At this time, the RCNRT had not yet filled the position of research director; it would not do so until August of 1990. The survey was ordered under the supervision of the Communications directorate. In a memo to commissioners, Dann Michols, Director of ~onsultationsand Coordination characterized the purpose of the Commission~spublic opinion research in the following way: ...to provide the Commission with a quick but informative appreciation of the general public awareness and understanding of, sensitivity to, and opinions on the issues raised by our mandate. The results should assist the Commission in understanding the context in which it is undertaking its research, consultations and communications activities ...The questions used in this intervention should be designed to give you the "big picture. 6 Although initially designed for internal Commission purposes of refining their mandate,' the survey results were made available to the press by the Commission in September
1990, just prior to the commencement of the public hearings. Summaries were published in several Canadian dailies. The media coverage pointed to the general lack of accurate knowledge and awareness of Canadians around NRGTs, the lack of support for public funding, and those groups of people Canadians considered appropriate recipients of various reproductive techniques.8
The survey method is a social science research tool, prone to abuse, manipulation and sloppy methods - much like any research tool. Polls, however, have attained a certain stature in both the mass media and in policy circles. In the media, they are presented as objective measures of that ephemeral phenomenon, "public opinion." For politicians, surveys provide a means of being "accountablew to the public they represent and are a routine part of many policy making exercises. Yet, despite their reputation and widespread use, a survey is only as objective and representative as its designer wants or needs it to be. Polls, particularly those whose results will be made public, can become strategic tools in political discourse. Polls are designed by polling firms according to their client's needs, on subjects the client deems central to its interests. The targeted public population is the object of study, never the client; the public does not pay to have itself Nobjectivelyw polled on the questions it decides are important. Survey questions can be constructed so as to contain within them the expected answers, or, answers can be directed in a certain way. This effect can be the result of the specific wording of a question, the range of allowable answers (in the case of a multiple choice survey) or from the order in which the questions are arranged, where a preceding question or series of questions can direct a respondent to a certain kind of answer. This influence can be even more easily accomplished with subjects about which respondents know little. Influencing survey results can be a deliberate act or it can be unintentional, due to poor design or inadequate knowledge of the subject at hand on the part of poll designers.9 At the time of writing, complete polling protocols and questions for the Royal Commission's surveys were not publicly available. Access to portions of the Angus Reid survey have been made public through documents submitted in support of the Federal Court suit by four commissioners.
The Angus ~eidpoll in question was the subject of an extended analysis by commissioner Louise Vandelac, a sociologist who has done considerable work around the media discourse on NRGTs. In May 1990, she composed a twenty-page critique of the poll design in a memo which was forwarded to the Commission chair and other staff members.1•‹The following is largely drawn from Vandelac's paper which can be consulted as part of the Federal Court Statement of Claim. The Angus Reid survey was conducted by telephone. Vandelac argued that a telephone interview method was absolutely inappropriate for such a complex and intimate topic, a view also held by another researcher who has conducted surveys on public attitudes on NRGTs." In addition to the intimate nature of the subject, the generally acknowledged lack of public awareness around NRGTS would require the allotment of adequate time for an intenriewer to fully introduce questions and to allow respondents time to reflect before answering. A telephone interview, for best results, should last no longer than 10 minutes. Any survey on the breadth of issues encompassed by
NRGTs would require more than 10 minutes. Vandelac argued that for these reasons alone, the reliability of a telephone survey on NRGTS was in serious question. Interview questions were organized into nine parts: a psychographic profile, separate sections on infertility
(which included many questions On IVF), surrogacy, genetic engineering, prenatal diagnosis, fetal tissue transplants, regulatory controls and the Royal Commission, morals and ethics and a demographic profile. Vandelac asserted that this list constituted a far to0 ambitious roster of complex topics for a telephone interview. In addition, she questioned the appropriateness of posing questions around moral and ethical views over the telephone. Vandelac pointed to the inadequate introduction of the survey questions such that insufficient background and context were provided respondents before they were asked questions on, for example, genetic engineering. Furthermore, while each section purported to determine opinion on a single area of the mandate, she noted several missing topics necessary for a global view of the issues at hand. The respondent, without these questions or background, would be left with only a partial view of the range and scope of the technical capabilities in question. The survey included a section meant to measure views on infertility but which also included a series of questions on IVF. Vandelac found the overall organization of this part of the survey to be misleading. Questions on infertility were immediately followed by questions on IVF before retcrning to infertility. The order in which the first few questions were presented suggested that new reproductive technologies were the only logical solution to infertility problems. Only later in the questionnaire were respondents asked for their own views on infertility. Knowledge-testing questions were mixed with normative questions On the availability of services to specific questions on embryo donation and freezing. On the specific wording of the questions, Vandelac pointed to the use of loaded language, such as "the ability of medicine to overcome infertilityu and "advanced techniquesu when seeking positive or negative opinions on the medical technologies. The term "infertilityw was never adequately defined and was confused with sterility. Questions referred only to "couplesn getting pregnant or suffering from infertility instead of individual women. NRGTs were presented as cures for infertility instead of means of circumventing it. The description of the IVF procedures was misleading, suggesting that IVF is a uniformly successful technique without risks. The lack of factual information on these techniques left questions on the "naturalness" of IVF without basis for judgement. Opinions were also sought on how the costs of IVF should be paid without first indicating to the respondent the true costs involved. This portion of the survey, Vandelac concluded, operated on the assumption that IVF is an accepted part of medical practise and that the only matters left for resolution were ones of payment method and access. Vandelac suggested that those who had constructed the questionnaire were simply uninformed about NRGTs. Considering that poll designers are generalists, this is not unlikely. It should, however, have been the role of the Commission to put the survey to the test. The Commission was, at this point, ill-equipped to perform this auditing task, working without a research director or a formal research plan.'' ~andelacconcluded that this survey, as it was constructed, would only result in a distorted image of Canadian opinions. She recommended that it be postponed until commissioners could meet to discuss the survey and until an overall research plan could be designed that would allow the better definition of goals for any survey. Vandelac's recommendations were not acted upon and the survey proceeded as it was designed.13 The Angus Reid survey represents a fundamental misunderstanding of and misuse of the survey method. Opinion polling on specific issues in the area of NRGTs is of limited value. Public opinion polls are conducted on the assumption that respondents possess some knowledge on an issue and have been able to develop an informed opinion. To date, NRGTs have been a marginal public issue; even women's groups had only begun a process of discussion and education.14 Media coverage of NRGTs has been largely promotional and uncritical.15 In this context, questions such as "In your opinion, is the ability of medicine to overcome infertility by using advanced techniques a positive or negative development?" or "Which of the following ways should IVF be paid for?"" are meaningless and impose on the respondent a restricted definition of the relevant issues.
It is apparent that the Angus Reid survey was not designed to facilitate future public involvement efforts by educating the public. In fact, the release of the poll to the media could be better qualified as disinformation. One print media outlet carried the Commission comment that "that
40% of Canadians have experienced infertility or have a family member or friend who is infertileIu"a statistic that the Commission wrote in its Final Report, "tells us little about the actual prevalence of Considering the survey's lack of definition of terms and its general technique, the reporting of this result is grossly misleading. The usefulness of polling for the Commission seemed to lie in its capacity for generating the "views of Canadians." References to the survey results, including the Angus Reid poll, appear throughout the Final Report as part of the "contextv of its recommendation^.'^ While certainly a useful means of increasing the legitimacy of its recommendations, the approach suggests a limited view of public involvement. Four of the commissioners maintained that the Commission had mistakenly interpreted its mandate; "public interest" had been taken to mean llpublic opinion.N20Polls constitute a passive form of political involvement, with the agenda and terms of debate determined by those posing the questions. Interpretation of the answers provide a further filter of public voices. For example, the Commission noted that its surveys detected an ambivalence towards technology; while people generally welcomed new technology and knowledge, they were equally fearful of its implications.*' What could be the reasons for this ambivalence? Certainly one cause could be the description of new technologies provided by the Commission surveys! The ambivalence could also arise from a lack of trust in the institutions managing this new knowledge. Either way, this information was for the Commission to interpret and develop, not for respondents. Nonetheless, the Commission considered polls a meaningful form of public involvement worthy of note and included survey respondents in calculations of their rate of public participation: More than 40,,000Canadians from across the country participated in clinical studies and national surveys, attended Public Hearings and Private Sessions, sent letters of opinion or written submissions, or left their thoughts on our toll-free telephone lines." (emphasis added) This same figure appeared in another, later edition of Update, the Commission newsletter, and its Final Report and press releases." The inclusion of clinical studies and survey respondents in figures of public participation susgests- a vision of citizen involvement that is limited at best, passive and manipulable at worst. This is quite different from engaging in a shared process of decision- making with citizens, of making citizens genuine partners in determining their public policies. B) Search Conference In an attempt to involve others in the interpretation of its mandate, the RCNRT organized the Wolfville Search Conference, held June 18-20, 1990. While the polls were directed to the "general Canadian population," the Search Conference sought out "forty of the most knowledgeable, experienced and articulate people availableu on NRGTs." to seek out ideas for the Commission's worksz4Most of the invitees were women, indicating a clear recognition on behalf of the Commission that NRGTs were an issue of particular importance to women.25 A focus on Mknowledgeableupeople meant invitees being drawn from the traditional areas where expertise is recognized: the law, medicine, and academe.26 While one participant noted that this kind of expert input was valuable, she pointed to the need for the Commission to ensure that "non-experts"would be actively included in future consultations.27 The two and a half day conference was organized around a "search" conference format. The name comes from the relatively free-flowing nature of discussion as participants from a variety of backgrounds are brought together to "searchv for ideas and solutions. Participants are divided into working groups and each group is assigned a facilitator whose task it is to initiate discussion, keep the group on task and to ensure that all members get to speak. All groups work on the same topic and each draws up a list or report of their discussion. These reports are then brought to a plenary session where all participants convene to share their results.28This process is repeated several times with a closing plenary at the end. The general topic of discussion for this search conference was the mandate given the Commission - to discuss views on the issues raised by the mandate and to suggest how the Commission might execute the mandate.29 Participants put themselves to the task and produced many lists on the origin of NRGTs, the issues raised by NRGTs, visions of the future, how to reach that future, the kind of activities required by the RCNRT to investigate NRGTs and possible courses of action.30
The organization of the Search Conference showed a willingness on the part of the Commission to share the task of interpreting its mandate and developing its research program by seeking out a variety of views. As the only forum designed for this purpose, however, this sharing was done in a highly controlled way. The Commission was able to construct its own profile of "publicu involvement by holding the conference by invitation only and by restricting attendance to recognized experts. The outcome or summaries of the meeting were not made publicly available, even upon request.3 1 This limited opening up of Commission decision-making appears even more restricted given the timing of the meeting. This conference, meant to interpret and define the mandate, was held eight months after the announcement of the
Commission in October 1989. Not surprisingly, some participants felt compelled to ask the commissioners what they had been doing in the interim. The Commission had by this time 60 staff members and research activities had begun.32 It is difficult to conceive that some interpretation of the mandate and prioritizing of tasks had not already, by necessity, been done. And indeed, the organization of the Commission's research into four distinct working groups on different medical topics has been established for at least two months.33 Still, by the time of the Conference, the Commission had not yet hired its research director. The person who would control the direction of future Commission research did not participate.
~f we assume that participants in the Search Conference were given the opportunity to influence the research program, the advantage of the kind of conference structure chosen by the Commission is the potential for a variety of views and opinions to be brought forward. No ideas are "out- of-boundsv and divergent opinions are sought out.
A disadvantage of this structure is the vast quantities of lists of ideas it produces without the supporting or rationale from whence they sprang. One participant noted that, "What is significant is not just that a particular idea is put forward by a scientist, a mother, or a disabled person, but that it is part of a larger system for making sense of the issues.1134Another, that lfmostparticipants I spoke with felt the name of the game was to keep us from actually developing ideas.fi3sWithout a forum to elaborate larger "metan questions, important distinctions were not highlighted for discussion. One participant cited how the term "researchv was used repeatedly without elaborating how various people distinguished it from a medical service, or what kind of values and visions of scientific practice lay behind the term. Without this kind of supporting context, some participants expressed a fear of having their ideas coopted. Even their presence might be used to lend legitimacy to ideas with which they did not agree.36 These fears over the misuse of opinions and views illustrate the importance of process for public involvement. The task of converging these lists and of drawing out of them some recommendations for the Commission fell to Commission staff who were to draw up a final action plan from "ideas and information gathered from many sources.u37 Ideas would be filtered, interpreted while others would be prioritized, discarded, or folded into other ideas. When responsibility for this task does not fall to the people who conceived the ideas in the first place, there is a loss of control over these ideas. This issue would be repeated throughout the Commission's process as participants would seek greater involvement and continuity than were allowed them. As an early attempt to open up its mandate to Canadians, the Search Conference showed some good intentions if perhaps poor planning and execution. The forum was one that encouraged broad discussion and sharing of ideas. The late timing of the conference and the reporting process caused legitimate concerns over apparent versus real consultation and the cooptation of ideas.
Conclusion If we return to our criteria for evaluating public involvement, these intial efforts by the Commission to develop its mandate with public input were inadequate. The survey, in the absence of accurate information, offered no significant opportunity for exchange or feedback; communication was entirely one-way and restricted to a predetermined range of responses. The Search Conference offered much more in the area of opportunities for exchange and feedback but was inaccessible to all but the 30 invitees; even summaries of the Conference were not publicly available. More forums like the Search Conference, offered earlier in the process and for a greater number and broader variety of people, would have served the Commission well. 4.2 Education Introduction Public announcements by the RCNRT indicated that it fully intended to involve the public in its investigations: The Commission...has set up an extensive Public Consultations Program to give Canadians from all walks of life and from all regions of the country the opportunity to contribute to the work, as it studies the origins, effects and impacts of the technologies.I Seeking a high level of public opinion and input on NRGTs included an assumption that there was an ''interested public1' for the reproductive technologies. In reality, there was no immediately obvious public constituency for the Commission to call upon. Apart from the Coalition that had lobbied for the Commission, there were no NRGT advocacy groups in the manner that Energy Probe would be an advocacy group for nuclear power issues. While the Infertility Awareness Association of Canada had a significant irterest in the Commission's work, their position of promoting access to techniques such as IVF (which echoed the briefs of many doctors and researchers) could not be expected the carry the burden of public discussion.* Furthermore, the intimate nature of the topic was such that individuals with personal experiences of infertility and treatment would not be likely to discuss these issues in a public forum (although several people, to their credit, did). While women's groups could be considered a natural constituency, NRGTs were still a new and emerging issue for many; discussion within the Canadian grassroots women's community had barely begun.3 Furthermore, NRGTs could be only one focus of the ever expanding agenda of "women's issuesI1 in which these (usually volunteer) groups are involved. The only evident and ready constituency that the Commission was assured of were the medical and research communities, the pharmaceutical industry and the legal profession. Fertility clinics, prenatal diagnostic centres, their doctors, researchers in hospitals, universities and private practise represented the most experienced people in the subject area. With their greater access to funds and representation by their well funded national professional associations, these groups could be expected to prepare and present official submissions. Without an obvious public constituency to depend upon, the onus for mobilizing public interest was on the RCNRT. A public education campaign would seem imperative. Without it, the Commission risked having a debate on the social implications of technology without the involvement of most of society. Preparing a brief requires information. Information and data on NRGTs in Canada, however, is very difficult to ~btain.~Many women's groups, trying to research their briefs, came face-to-facewith this reality. A comment from the brief presented by the London Status of Women Action
Groups is illustrative: Not only does our survey show that access to the new reproductive technologies is severely restricted for women, but information about these technologies is almost non-existent for women. It was only through a degree of expertise, pooled resources and persistent attempts that we received answers to our questions. Even then, the only program in the area refused to answer our requests fully. Notwithstanding the importance of education, a Commission faces a potential conflict between the roles of educator and adj~dicator.~Education and information are never neutral. There are, however, Canadian precedents for commission education campaigns where a degree of objectivity and independence were sought. The Ontario Porter Inquiry
(1975-1980) set up the Public Interest Coalition, an independent office meant to carry out education without jeopardizing the inquiry's credibility.' The Cluff Lake
Board of Inquiry (Saskatchewan 1977-1978) supplied depositories of resources and bibliographies in libraries and public buildings across the province and provided for an independent scientist for consultation by public groups.' For the RCNRT, at minimum, an education campaign would have to address two areas: first, the technologies themselves and the kinds of issues they raised; and second, an awareness of the omm mission itself as an appropriate forum for the public to register their concerns and opinions. On the latter point alone, the Commission had a formidable task; its own Survey conducted in its first year
indicated that less than 15% of Canadians were aware of the
existence of the commission and less than 1% of respondents referred to it without prompting.9 With respect to its first task, informing Canadians on the technologies and their implications, the Commission must have been aware of the barriers posed by the scientific language and technical details which surround NRGTs. Apart from acting as an exclusionary barrier to vnon-experts,N such language constitutes a hindrance to effective public understanding. Lack of understanding inevitably affects rates of public participation. Many women's advocacy groups, for example, were in large part new to the topic. It was a challenge for them to decipher the "scientific jargonu and to develop adequate expertise within their usually volunteer organizations to a level that someone was familiar enough with the language to be confident in making an official presentation to a government body." A brief from the Women's Health Clinic explained: Women have not spoken out about these issues because: ... most of us believe we are unqualified and therefore unable to participate in the public debate." The Royal w om mission's public education campaign can be divided into three main projects: public information kits, publications and panel discussions.
A) Public Information Kit The public information kit was developed for distribution prior to the Start of the public hearings in
September 1990. It was designed to both increase public awareness of NRGTs in general and to encourage participation in the Commissionls hearings or other work. Kits were initially mailed out free of charge to all groups and individuals on the Commissionls mailing list. Updated at different stages of the Commission's work, the kit was continually distributed as a basic information source to all those who inquired about the Commissionls work. The information kit consisted of a folder which included a copy of the mandate, biographies of commissioners, the most recent RCNRT press releases or Update, and the main item, a 16-page booklet entitled A Guide to Public Participation in the Work of the Royal Commission on New Reproductive Technologies. The pamphlet included an explanation of the mandate and outlined some of the issues that the Commission expected to address. It listed the ways in which one could direct one's opinion to the Commission in addition to addresses, deadlines and phone numbers .''
AS the commission's main method of educating the public on a complex and little known subject and of attracting public involvement, the information kit was ill-suited to the task. The pamphlet was written in a question and answer format where an imaginary reader's questions are presumed, provided and then answered. This format suggests that the material was targeted to newcomers to the subject of NRGTs, yet, the pamphlet lacks the factual and background information necessary to allow people to become knowledgeable and to develop an opinion. One of the commissioners reviewing the documents suggested that the kit suffered from over-standardization, attempting to be all things to everyone. He regarded the kit as too difficult for the uninitiated yet too simple for those already familiar with the topics.I3 However, if one considers that the biggest challenge facing the Commission was the lack of a public constituency, it is the inappropriateness of the material for the uninitiated that constituted its most serious failing. The only material in the kit which attempted to explain the technologies and issues in question was the above pamphlet. Yet many of the uanswersH in the question and answer format consisted almost entirely of lists of more questions. While NRGTs do raise many difficult dilemmas, these issues are not immediately apparent without an awareness of what the specific technologies are and the nature of their capabilities and limitations. The pamphlet provided no explanation of the procedures and therapies in question. IVF was not defined. Prenatal screening and diagnostic procedures were not explained beyond pointing to the examples of ultrasound and amniocentesis. No figures on costs or on success rates or prevalence of infertility were provided. Also not clarified were terms such as "genetic manipulationN as well as many others. There was no list of suggested sources should readers want to follow up certain issues. The french version of the kit suffered from similar problems, employing little known expressions such as 'sante genesiqueWl4 (reproductive health) . The pamphlet was not helpful in shedding light on the current systems in place where decisions are made as to which kinds of medical research are funded or which new medical technologies will be assessed and introduced. There was no indication that bodies such as the Medical Research Council, provincial and federal governments, pharmaceutical companies, ethics and hospital boards all play a role, and have played a role, in the development and dissemination of NRGTs as they are offered today. The RCNRT was evidently going to have to take these existing bodies and their power into account. Why not the public too? The pamphlet's summary attempted to demonstrate a balanced approach by suggesting opposing assessments of the technologies. An example is the following phrase, "Are these procedures developed primarily in response to people's needs or as an expansion of the medical/scientific community's abilities?" Yet these interpretations are offered without the context or assumptions that led to them. The above question assumes an awareness of the social power of medicine in our society and the abuses to which it has led in the past, especially with regard to women's health. This assertion is not explained. Without this kind of context, many of the wcontroversial issuesN put forward in the pamphlet appear curiously unfounded. Questions such as, "TO what extent do the various technologies create conditions which do or could exploit appear to have no basis. The reader is given no information as to the origin of such assertions or where one might find out more about them. As an educational tool, the Royal Commission information kit seems especially lacking when it is compared to a similar package produced at the same time by the Canadian Research Institute for the Advancement of Women (CRIAW).16 This kit consisted of a series of separate information sheets that explained the technologies in detail, each step involved in the therapies and how the debate has arisen around each of them. It indicated several ways of getting more information and resources including a list of relevant organizations. A glossary of scientific terms addressed the difficulty of the technical language. The kit included practical advice for groups on facilitating discussions and on educating others about the technologies. And, finally, in a sheet that seemed to belong in the Commission's kit, step-by-stepsuggestions on how to prepare a brief for the Royal i om mission, including what to expect when presenting, what to wear and how to address commissioners. For those new to the issue of NRGTs, the CRIAW kit truly provided the tools that could have lead to a successful intervention in the Commission's work. None of the above were included in the Commission's kit. Not only was the RCNRT kit lacking in some basic information and practical guidelines, but, as one commissioner noted, the question and answer format gave the kit a paternalistic tone that was not conducive to creating an atmosphere welcoming of participation. The presumption involved in posing questions, responding and reacting on the public's behalf seemed to be at odds with the pamphlet's goal of inviting the public's opinions and thoughts. This presumption had the effect of demonstrating a lack of respect for the public's intellectual abilities, creating a distance between readers and the Commission." Martin Hebert, one of the commissioners asked to review the kit, noted that the pamphlet's general tone of seeking balance left the impression that the Commission's goal was to negotiate a vast compromise. Better would have been an outline of a proposed research path and method which would be as global as possible.18 Notwithstanding the overall tone of balance and compromise, Hebert noted the use of loaded language that could qualify these technologies before they had been studied. For example, he pointed to how, in the fr-rich version, NRGTs were referred to as "remediesn (remedes) for infer ti lit^.'^ In the English version, one can point to the following glowing description of the development of NRGTs: Each year new frontiers in the area of human reproduction have opened and, with the explosion of experimentation and new knowledge, a whole new spectrum of challenges faces individuals and societies alike." (emphasis added) For many groups and individuals who contacted the Commission or were contacted by it through its initial mail- out, the information kit was their first encounter with either the Royal Commission or NRGTs or both. As the major means of informing Canadians and attracting people to participate in the Commissionls work, this kit was both uninformative and uninviting.
B) Publications Two sets of RCNRT publications served to inform interested people on the Commission and its work: a newsletter and opinion/editorial articles. The Commission newsletter, Update, was compiled semi- annually and was distributed through its mailing list and at public events.*' Different issues summarized Commission activities, including research, public events and consultations and listed new Commission publications. Contact numbers and addresses were always provided. Given that a royal co~i~si~n,as an Non-goinguevent, will not attract consistent media coverage unless it is staging public events such as hearings, the newsletter was an important element of continuity for those interested in the Commissionls work. With its original two-year mandate extended to four years, the newsletter was one way for the Commission to ensure those eager for results that work was underway.
Nonetheless, the Updates could not redress any of the shortcomings of the information kit. Not designed as an information resource, the newsletter assumed previous knowledge of the technologies and techniques in question. In addition, printing of the newsletter began only once the public hearings process was completed; the newsletter could not solicit and encourage involvement in this key portion of the participation program. By the time the Updates were in regular publication, the only means for involvement left for interested members of the public were to submit a written opinion or to call the toll-free telephone line.
In the first few months of 1993, the RCNRT prepared three editorial page features for the opinion pages of Canadian dailies. The topics were: "Judicial Intervention into Pregnancy and Birth; "Framework for Decision-Making;" and "Preconception Arrangements." These opinion pieces were in fact previews of the C~mtIi~~ion'~Final Report, which at the time these articles were submitted, was due in July of
1993. The "~rameworkfor Decision-Making" was explicitly identified as drawn from a draft of the Report and the remaining two articles summarize recommendations that would also be made in the Final Report.22 While the RCNRT identified the opinion pieces as a means of informing Canadians," the timing of the articles indicates that the information flow was designed to be one- way. Appearing just months before the Final Report, any feedback from the editorials would not have been part of the report-writing process. Instead, the usefulness of these opinion pieces seems to have been to act as "trial balloon^.^^ The trial balloon is a public relations technique where a policy or promotion is purposely "leakedl1 to the media in order to gauge public reaction; the information is then used to better manage the later release of the same or revised policy. At least one of the opinion articles was also meant to counter coverage of one of the ex- Commissioners allegations that the Commission was ignoring ethical issues in its Use of the print media's wide general readership can be a very effective means of disseminating information and encouraging feedback. The RCNRT could have benefitted frcm an earlier use of the opinion/editorial feature that would have complemented its participation and consultation program in a meaningful way. ~nstead,these opinion pieces were meant solely for the strategic purposes of "damage control." The fact that both the Updates and the editorial features appeared later in the CO~~~SS~O~'Slifespan suggests that
the organizational challenges of the ad ~OCpublic inquiry process played a role. By the time the Communication and Consultation systems were working well, significant opportunities for public involvement had gone by and efforts were redirected towards public relations.
C) Panel Discussions With an eye towards creating some public dialogue on NRGTs, the Commission organized a series of panel discussions on the social, legal and ethical implications of the technologies. Entitled, "Addressing the Issues: New Reproductive ~echnologies,"discussions were held in Halifax, Calgary, Ottawa and Winnipeg with a total attendance of almost 1500 people. A different panel of speakers, drawn from the local representatives of the medical and legal professions, academia and public groups, were brought together for each event. Proceedings were broadcast on local cable community channels and simultaneous translation and sign-language services were made available on site.25 This kind of discussion forum can be a very valuable tool for education and for generating discussion. A more flexible format than public hearings, panel discussions offer more opportunity for debate and questions. Without the pressure of making an official presentation, those attending are freer to speak up. The use of broadcast technology further enlarged the omm mission'^ potential audience and scope of its efforts. Restricted to only four cities and used only in the first two years of its mandate, the Commission and Canadians could have benefitted from a more extensive use of this forum. The RCNRT, like every other commission operating before it, was working under severe time pressures requiring it to ration its efforts. Panel discussions and similar events, however, do not require an institutional presence; the Commission could have delegated and enabled other Canadians to carry on this work for themselves by offering its information resources, financial resources or even a facilitator's or discussion kit. The preparation of a discussion kit for distribution at these events and on request could have encouraged the organizing of similar events, with or without the involvement of 'lfexperts.ffThe CRIAW kit cited above contained many elements of a successful discussion kit. In this way, the momentum of the Commission's discussions could have carried on without the direct involvement of the C~mmission. One of the RCNRT's predecessors made the discussion group technique its central form of participation. The Citizens' Forum on Canada's Future (the Spicer Commission), although widely reviled as a cynical tool of the Conservative government, did seek out some innovative ways of generating participation and involvement. One of these was the citizen's discussion group encouraged by a facilitation kit prepared and aggressively promoted by the Cornmi~sion.~~While the political purpose of this extensive participation exercise is another story, these discussion kits succeeded in educating and generating public discussion on a difficult topic.
Conclusion This section addressed primarily the education and resources aspect of the evaluation criteria. In light of the scientific and technical aspects of discussions around NRGTs, the Royal Commission might have conducted a broad based public education campaign directed towards the general public and aimed at increasing awareness of the issues and problems. NO significant public education campaign was undertaken. The information kits were not at all designed for the task. The Updates performed a valuable continuity role but were, along with the opinion features, badly timed to affect public involvement. The panel discussions were important contributions to education but there simply were not enough of them to reach many Canadians. While the Commission cannot be expected to reach every single citizen, it could have enabled and encouraged citizens to carry on some of this process themselves. A public education campaign can provide many of the necessary tools and information resources necessary for successful public interventions. All of the successive participation efforts by the Commission have to be evaluated in light of its education campaign, or lack thereof. 4.3 The Public Hearings Introduction Parenteau describes the aim of public hearings as that of transforming individual messages into collective judgement. This transformation is achieved not by reaching consensus through a process of making knowledge objective but through the exchange and sharing of information based on strategic alignments that precede the hearings.' This statement recognizes that hearings do not operate in a vacuum but that participants are social actors with established social positions that they bring to the hearings. In the case of NRGTs, doctors and researchers bring with them the respected status of science and medicine along with the neutrality of ideological position that their affiliation grants them. Citizens bring with them no particular status beyond "consumern which even then grants them no prior pecuniary interest. Advocacy groups bear the mantle of their group's "bias," for example "feminist," which is placed in opposition to the status quo. In a
process that seeks to define the "public interest," these "biasesn can reduce the legitimacy of advocacy group claims against the claims of an apparently more objective and
neutral scientific claim. public hearings, by providing a forum open to all,
constitute an important way of ensuring accountability for a royal commission. Yet, as discussed in section 2.3, public hearings are a notoriously poor means of public involvement. Effective public involvement requires an engagement with the kind of social positions described above. Intervenors do not come to hearings with equal status or resources, both of which can affect the transmission and legitimacy of their messages. TO transform the public hearing into an effective vehicle for public participation requires considerable commitment and effort.
A) Preparing for the Hearings The Royal Commission on New Reproductive Technologies announced in mid-May 1990 that public hearings would begin in September 1990. Early press releases promoted the "total societyM approach planned by the Commission: ....dilemmas raised by new reproductive technologies ...should not be left to the experts, because they could ultimately affect the lives of all of us...we hope that Canadians from all walks of life - men and women, experts in the areas we have been asked to examine, those who have had experiences with these technologies and procedures, educators, and interested individuals - will seize this rare and important opportunity, by coming forward and contributing to the work of the omm mission. 2 In all, the public hearings, although spread over three months, took 28 days. As a proportion of the C~mmissionf~ total mandate (October 1989 - November 1993) this process was quite brief. presentations were made by over 485 people representing almost 250 organizations (briefs were often presented by more than one person). Across the country, 65 people presented as individuals, unaffiliated to any group.3 The hearings were advertised with official public notices placed in the print media in May 1990 and through mail distribution of information kits. (See section 4.2) TO be invited to appear, groups or individuals were asked to submit briefs or position papers by July 31, 1990.~In a letter to the chair, four commissioners noted that two and a half month's notice seemed hardly sufficient, especially when these months occurred at the end of the academic year and in the middle of the s~mrner.~Such notice would also present a problem to small volunteer groups whose personnel resources and networking capacities dwindle during the summer vacation months.6 Shortage of time was one factor in Commission decisions about notice and the hearings schedule. When originally called, the RCNRT had a two-year mandate. (Although at what point the decision had been made to seek an extension is unclear, commissioners were officially informed of the request in January 1991.') In responding to concerns about the timing of the hearings from both commissioners and public groupst8the omm mission cited time pressures; public hearings had to be held early enough in the process so as to have an impact on research and Commission deliberations. In addition, there had not been enough time Or staff to adequately plan a "publicity" Although the Commission maintained that organizations concerned over the shortage of time "knew that they would have another opportunity to meet with the Commi~sion,~'~this would prove true only for those groups later selected by the RCNRT. (See section 4.5) To advertise the hearings, the Commission chose a conventional means of announcing the hearings - the legal notice. Given the Commission's above stated desire to seek a broad base of public involvement, the advertisement through which it chose to communicate this message was inappropriate. (See Appendix A.) A densely written column with small print, the ad had the appearance of a legal notice. Legal announcements are not widely read and can easily escape citizen notice." Topped by the government seal, the name of the Commission and the title "Public Notice," the advertisement does not appear "friendly" or make the Commission seem accessible to "Canadians from all walks of life."12The language of the notice assumes a high level of literacy and pre-existing interest and knowledge in these technologies and related issues. Consequently, the statement placed at the bottom of the notice which reads, "Your views and experiences are important!" seems out of place. ~lthoughthe ad points to the hearings, consultative meetings and private sessions as means of involvement, it neglects to mention that citizens were free to submit written briefs up until December 31, 1991. Four commissioners noted that the notices received little public attention, placed as they were in the midst of the national Meech Lake debate that was occurring at the same time.I3 In addition, a local Vancouver group that was attempting to mobilize women's groups around the city to make presentations to the Commission, wrote to Baird in July 1990 over their concern about the low level of awareness of the hearings among women's groups and the lack of any perceptible media campaign by the Commi~sion.'~The design and placement of the ad displayed a surprising lack of awareness of advertising techniques in a world where one is surrounded by the attractive and attention-getting messages of advertisers and social marketers.
As discussed in section 4.2, the lack of an obvious public constituency suggested the need for some outreach work. Another option which can complement or in some ways replace an educational campaign are preliminary hearings in the manner of the Berger Commission. Preliminary hearings provide a forum for the exploration of the needs of participants as well as for a negotiation of priorities for the public discussion to follow in the formal hearings stage. Groups can also apply for intervenor funding at this time. Groups and individuals with similar goals meet for first time; this opportunity to meet can point to certain strategic partnerships where groups can benefit by pooling resources and working together." The RCNRT held no preliminary hearings leaving the information, funding and time needs of many groups unexpressed. Some of these needs were significant. In trying to attract Canadians from all walks of life, the Commission must have been aware of financial barriers to participation, especially with regard to individuals or volunteer and non- profit organizations. NRGTs had not yet become a significant area of awareness and action for many grassroots women's groups or visible minority groups.'6 Yet there was only a short time during which these groups could develop enough expertise in this new area to present their concerns in an official way. Preparing a brief incurs costs such as typing, photocopying and phone calls. It requires the diversion of valuable staff, volunteers and resources to an entirely new and complicated area. 17 The eventual mobilization of many women's groups must be attributed to the work of other organizations. The Coalition for a Royal Commission on New Reproductive Technologies and the Vancouver Women's New Reproductive Technologies Coalition both made considerable efforts in encouraging various organizations to get involved.'' The New Democrat Member of parliament, Dawn Black, sent a message to over 4000 individual women and women's groups outlining the steps to take to become involved. And finally, many groups made use of the then recently published, Canadian Research Institute for the Advancement of Women's guide to the NRGTs which included step-by-stepinstructions on how to prepare a brief. l9
B) The Hearings Public hearings can be organized in various ways, some more formal than others. The public hearings of the RCNRT were set up as a forum where commissioners would make themselves available to hear the submissions of any who wished to appear. This format attempts to be less like a court room than other kinds of inquiry hearings; nc cross- examination of witnesses is allowed although questions of clarification may be posed by the commissioners or their staff.*"The process is designed as a one-way flow of information from intervenors to commissioners; it is not a forum conducive to public discussion. Yet the commission did not appear to place much faith in this form of hearing even as a one-way mode of communication; cornrnissioners participated in nmedia and public relations" seminars designed to prepare them for the public hearings. omm missioners were taught how to yawn without appearing to and how to give the impression of listening when tired.*' This approach demonstrates a disregard for the public and a confusion between public involvement and public relations. The hearings were held in hotel ballrooms across the country, a traditional arena for royal commission hearings. These places are not, however, familiar to large segments of the population and for many are considered, "foreign
territory. 1122 The lay-out of the rooms was quite formal. The Commissioners sat at a large head table, separated by a large distance from a smaller table where the intervenors sat facing the commissioners. With their backs to the area for public seating, it was clear that intervenors were expected only to address commissioners. This kind of room lay-out communicates a clear message to intervenors regarding the distribution of power between commissioners and intervenors. The hearings did not provide any kind of opportunity for discussion and information exchange. Intervenors could not ask questions of other intervenors. Advocacy groups constantly deploring the lack of information available in the field of NRGTs could gain no new knowledge in the hearings even clinicians working in the field came forward to present. The gaps in information between the two groups remained as large as ever.
~t should be noted that the format and structure of the public hearings constituted one of the subjects of contention between Patricia Baird and four commissioners, Bruce Hatfield, Martin Hebert, Maureen McTeer and Louise
Vandelac. They disputed the decision to allot only 10 minutes presentation time to each intervenor, a decision originally made to allow more time for commissioners to pose questions." These commissioners claimed that the public hearings process, designed without their input, prevented them: ...from truly pursuing the important matters raised by intervening individuals and groups, forcing them instead to resort to a limited and superficial discussion with intervenors, focusing on the form rather than the substance of the process.24 A Commission memo cited "scarce resources of time and moneyu as the reasons for limiting the public hearings format in the interest of "equity and implementability.u's The term equity is normally used to describe programs which treat different groups according to their specific needs in order to achieve equality of result. In the context of the above phrase, equity seems to refer to treating everyone the same, despite differing needs, as a means of saving money. The same memo pointed to the "very few complaints concerning this stru~ture,~?~as evidence of the hearings success. This deafening silence could also be taken to mean the opposite - that the hearings failed to reach precisely those who wculd have had cause for complaint.
The hearings were held only in major urban cenEres. A total of 17 cities in all the provinces and territories were visited by the commissioners, with two separate visits to Toronto. Early press releases stated that hearings were planned for 26 communities ." hmng the cancelled dates were Chicoutimi, Sherbrooke, Regina and Thunder Bay." The decision to reduce travelling to 17 cities was made on the basis of numbers of letters of intent received as a result of the ad and information kits. Even with the reduced selection of cities, some hearings were very sparsely attended. For example, while the hearings in Quebec City were scheduled for 2 days, commissioners only needed to sit for a single afternoon to hear the 7 intervenors." Louise Vandelac remarked how several times Commission staff outnumbered the public at the hearings; these "publicw hearings had acquired an almost confidential air.30 The decision not to provide for intervenor funding meant that the Commission could not alleviate the costs of travelling to urban centres. Travel allowances to the hearings were not provided, a decision which no doubt excluded many rural women's groups as well as aboriginal groups. And in a surprising omission considering the topic under discussion, no child care was available on site. The only significant concession made to the schedules of those with job and child care responsibilities was the holding of hearings into the evening hours. Intervenor funding, however, could not have resolved another weakness of these hearings - the difficulty of getting information on NRGTs. Ozawa points out that information contributes to both voice and standing in public scientific controversies. The inadequate education campaign, availability of information and resources offered "Canadians from all walks of life," to participate in the hearings must be compared to the institutional, social and information advantages held by intervenors from the medical and scientific fields. Contrary to the situation of volunteer advocacy and service groups, the medical and research communities, the pharmaceutical industry and the legal profession were equipped to prepare submissions to the Commission without funding. At the hearings these groups were represented by individual submissions and by well funded national professional associations, among them, the Society of Obstetricians and Gynaecologists of Canada (and each of its subcommittees), the Royal College of Physicians and Surgeons of Canada and the Canadian Medical Association. These intervenors carried with them the traditional authority of science as well as the weight of their financial interests in the technologies (usually left unsaid) which, as discussed above (see section 2.31, are supported and granted greater legitimacy in an inquiry setting than are advocacy groups with their more qualitative concerns. Certain experiences of participants from the women's community point to some of the weaknesses of the hearing format. In interviews with women who presented, all reported how intimidating the experience was, even for those with previous experience in academia and with government panels. One woman prepared a brief despite what she found to be the overwhelming amount of scientific data to learn and the frightening thought of presenting herself to a royal commission. Her presentation reflected the thoughts, no doubt, of many Canadians - it ran through a variety of techniques, highlighting the many questions and ethical concerns raised by the procedures. To her dismay, the first reaction to her brief from a commissioner was the rather dismissive question, "So you aren't making any recommendations are you?" Other participants referred to the apparent dismissal of any of their comments that were not framed as specific recommendations and that did not adhere to the boundaries of the mandate, as perceived by the Commission.31 Part of the commissioners' impatience in the above incident can be traced to the hearings format. Commissioners were asked to listen, for example, to a technical submission from an IVF clinic doctor immediately followed by the very personal thoughts of a woman experiencing fertility problems. In this, the Commission could have learned from the Berger experience where separate hearings were held for technical submissions and for communities, public groups and interested individuals. Each type of hearing allows for a discussion of both social issues and technological issues (which are inseparable) but in the language and format in which each group is most comfortable. While many doctors, clinicians and researchers did present at the hearings, it is equally evident that some prominent stakeholders chose not to participate, among them the Pharmaceutical Manufacturer's Association and the individual pharmaceutical firms. (Organon Canada submitted only a short written brief.) The choice of these firms not to appear at the hearings is curious given their significant investment in the drugs used in many of the NRGTs. This decision suggests that either they considered the hearings an inappropriate forum to promote their views or that they were aware of better ways of making their interests known to the Commission. Perhaps both. The Commission, however, did not fail to recognize the lack of participation from many types of groups in its public hearings. An internal Commission memo pointed to a lack of input from, "industry, the francophone community, various ethnocultural communities, youth, religious groups and aboriginal^."^' According to the memo's author, the lack of input from these groups stemmed not from an inadequate information campaign or the lack of an accessible process but, "because they had nothing to say on our mandate or because they did not understand the issues or our .33
Another technique which can make public hearings seem more "accessible" is to allow the discussion to be carried beyond the walls of the hearings room. As a complement to a public education or awareness campaign, a commission can provide an on-going summary of its hearings to the interested community and for the benefit of future participants. The Berger Commission arranged with the Northern CBC radio service to have its hearings summarized daily.34 The Cluff Lake Board of Inquiry's information centres distributed weekly ~ummaries.~~The RCNRT did not produce its own summaries nor did it make any explicit arrangements with the media, accepting by default the haphazard coverage choices of the news media, While certainly most Canadians get their daily news from the mass media, it comes with its own set of biases, many of which can work against building an informed public discussion on a complex issue. The combination of deadlines, a generalist education and scarce resources make it difficult for the average reporter to represent a scientifically-informed subject to its fullest. Usually only one or two opposing views around a particular issue are identified and these are made to fit into reliable story "pegs." One of these story pegs is conflict and the following example points to the inadequacy of relying solely upon the mass media to foster fruitful public discussion. The press coverage of the hearings in Toronto during
October of 1990 focused On access to IVF, characterizing the debate as "feministsu versus "infertile womenv. Feminists, primarily represented by the National Action Committee on the Status of Women (NAC), were portrayed as denying "choicem to infertile women who, in turn, were desperate to try anything to conceive.36 On television, two networks framed their coverage as a debate between Judy Rebick (NAC) and Ann Andrews, an infertile woman.37The emphasis on the conflict was such that NAC felt compelled to reply in letters to the editor3', and another smaller group of women who presented at the last set of hearings in Vancouver, also felt compelled to structure their brief as a correction of the press coverage.39 While these two groups were legitimately split on questions of access, ignored in the coverage were the areas of common ground: NAC's statement of support for services to infertile women; how both groups pointed to a need for infertility prevention programs and; how both called for safe and effective NRGTsa40These common points dealt with establishing priorities for technological development, priorities that had not necessarily guided the development of IVF over which these groups were divided. The framing cf
NRGTs as an issue of "rights" - rights of equality, right to free choice, right to procreate - begged the question of how the technologies had come about in the first place, and the inherent worth of the techniques. This kind of assessment was called for by the Commission's mandate. The morai and ethical implications of reproductive technologies, especially with respect to their connections to and facilitation of genetic research, were deliberately highlighted in NAC's brief to the Commission. These issues were not broached in the news coverage.
The Commission followed up its hearings with a publication entitled, What We Heard: Issues and Questions
Raised During the Public Hearings in September 1991. The document was structured as a summary of questions and issues that had been brought up during the hearings. The stated goal of the document was to inform Canadians and to encourage responses in the form of written submissions. The document was written in a very personal and accessible language. As an educational and participation tool, however, the document's release was ill-timed. A much more extensive and informative guide to the issues than the Commission's A
Guide to Public participation in the Royal Commission on New Reproductive ~echnologies,this document could indeed have solicited participation for a second set of hearings. Or, had the Commission held preliminary hearings, this is the kind of summary that could have set the stage for the main hearings. AS it was, the document was unlikely to have reached significant numbers of people who had not already presented or made a submission. For those who were missed by the hearings, it was unrealistic to expect "Canadians from all walks of life," unused to writing briefs or official papers, to choose the written submission option.
Conclusion Many assessments of public hearings as participatory devices have shown the forum to be flawed and open to abuse.41Why then are they used so consistently? Ashforth suggests that they remain popular with public inquiries
primarily because of their symbolic dimension - for their ability to lend Commission work a certain legitimacy." They are also one of the quicker, cheaper and administratively easier means of participation to organize.43 It is, however, precisely this laissez-faire approach to participation that creates the inequities and imbalances of the hearings. Public hearings, in order to be effective means of participation need substantial support. The Royal Cornmission on New Reproductive Technologies did not provide this support, not in an education campaign to prepare the public for the hearings, not by making the hearings accessible and welcoming of lay participation and not by providing resources for effective involvement. Consequently, the hearings proceeded in a highly traditional and limited manner with both voice and standing restricted to conventional experts in medicine, science and law. Grassroots organizations who deal with the health care system, infertility and women's reproductive rights on a day-to-daybasis were not well represented and those that were, were not awarded equal expert status. The hearings were not the only element of the Commission's participation program and the Commission attempted to attract those who might not want to be involved in formal hearings by offering other forms of participation. Nonetheless, the hearings must be seen as a significant part of the program in that they were the most public and the most open form of involvement. No other element of the program would seek to bring large numbers of people together in a public forum. Yet the type of hearing used did not provide an opportunity for the pulling together of various views for debate. Discussion was restricted. Participants could not discuss among themselves. Intervenors could not address arguments made by others unless they had been attending all the hearings. The real work of these kind of hearings, the interpretation and analysis, is done by inquiry staff after the submissions have been presented and the hearings are complete.& This process removes the possibility of response and the development of ideas, positions and recommendations over time by the intervenors. The process embodies a view of public participation as a static program which can be called up after the terms of reference have been decided and that can be terminated before the decision is made."' Checkoway notes that public hearings appear to function best at containing and controlling participation. The way in which hearings are announced and the choice of venue can both limit attendance. The adherence to formal procedures restricts communications. The official agency's responsibility for reporting on involvement reduces intenrention to the status of "inputv as submissions are selected and framed for the final report. All of these characteristics make hearings a "safeM method of participation and constitute the reasons for both their popularity with institutional actors and their failure for participants.46 4.4 Private Sessions and Other Private Communications Introduction As alternatives to participation in the public hearings, the Royal Commission offered to the interested public a couple of other avenues for participation in its work. These options included private sessions for those with intimate experiences with the technologies, a toll-free telephone line and written submissions and letters.'
A) Private Sessions In recognition of the fact that public hearings would be an inappropriate forum for those Canadians with personal experiences around reproductive technologies and the intimate subject of infertility, the Commission offered private or llarmchair"sessions. These meetings were described as a more private and informal venue for discussion. The summary of these meetings. Personal Experiences with New Reproductive Technologies, protected the identities of the participants. The Royal omm mission reported more than 500 requests from individuals and couples who wanted to relay their personal experiences. All respondents were accommodated through one of several options offered them: to do a telephone interview administered by a trained interviewer (a popular option with those in rural locations who could not manage a trip to a larger urban centre); to submit their experiences by a letter or by taped submission; to participate in a group discussion of 6-8 people with at least one Commissioner and a facilitator; or to have a private meeting with at least one Commissioner and a facilitator. In the end, 60 telephone discussions were held, and over 200 requests for face-to-facemeetings were organized into eleven small group discussions and 30 private meetings. The remainder responded by letter or taped submission. According to the Commission, Private sessions were a key element of our Consultations Program ...The primary objective of the private, or "armchair," sessions was to provide an opportunity for individuals and couples to voice their concerns, and to ensure that their personal perspectives were included in the Commission deliberationse3 The development of a private sessions program demonstrated an awareness on the Commission's part that the assessment of any technology's impact on the lives of people cannot be measured solely by cost-benefit analyses and other quantitative measures. Many critiques of NRGTs have argued that the way in which the techniques have been developed and practised systematically fails to take into account the needs, experiences and emotions of those they are supposed to treat."he program's inception also demonstrated an awareness of some of the weaknesses of the public hearings format. The sessions made it possible for the Commission to gain some information that could only have been elicited in situations where confidentiality and anonymity were guaranteed. For example, the Commission learned of women who brought in friends to pose as husbands as a way of circumventing clinic requirements of a heterosexual marriage partner for admission into the programs.' The Commission was also told how the high cost of fertility drugs in Canada was avoided by smuggling these drugs in from the United Statesa6 As a means of public involvement the private sessions suffered from other weaknesses, the most serious of which had to do with the self-selection of participants. The offer to participate in the sessions was dependent on the initiative of citizens to contact the Commission. This aspect must be evaluated in light of the lack of a public awareness and an education campaign which would affect both the overall rate of participation and the range of people who would respond. The type of bias introduced by self- selection for this particular consultation is best demonstrated by the fact that a significant majority of people who approached the Commission wanted to address IVF. Many of these people came forward only after having been asked by the IVF clinic at which they were undergoing or had undergone treatment. Others came forward because of news reports that some groups were recommending to the Commission that a moratorium be placed on NRGTS.' A concern with having clinics as the major source of respondents is that a clinic, in its own self-interest, will solicit only those patients who have had generally positive experiences with treatment. Notably, none of those who discussed IVF with the Commission wanted its practise stopped.' Those people who may have dropped out of an IVF program due to poor experiences would no longer be part of a clinic's pool of patients to draw upon. Without a widespread awareness of the Commission's work, there is no guarantee that this latter group would have been reached in any other way. It is also not unusual that the greatest number of participants in the private sessions had experience with . IVF. IVF, in comparison to surrogacy and assisted insemination (AI), has the most institutional support and legitimacy and is not subject to the kind of public censure and secrecy that exists around surrogacy and AI. While IVF clinics could easily contact their patients to encourage them to contact the Commission, there do not exist any similar bodies or organizations to maintain records on those who have attempted A1 or arranged surrogacy contracts and who could then contact those people. There is also reason for concern over the structure of some of the group sessions where respondents with similar experiences would be assembled in a single meeting. One of these group discussions consisted of six couples and the doctor who had treated them.9 The presence of the doctor in the room would certainly have made it more difficult for those couples to discuss problems with the treatment they had received. This is not to say that the private sessions elicited only glowing reports of the procedures because several critical points around the programs were brought up. Highlighted in particular were problems with counselling, public education programs, the lack of resources for making informed choices and the inadequate training of general practitioners around treatment for both female and male reproductive diffic~lties.'~In consideration of the way in which a significant proportion of respondents were sought out, a broader sampling of users of NRGTs might have resulted in far stronger criticisms.
B) Written and Taped Submissions The one method of submitting one's input to the Commission which was consistently available throughout the Commission's mandate was the written or taped submission. In its Final Report, the Commission reported that it had received 500 written submissions, letters of opinion and signed petitions. I I Writing a letter or composing a brief is a very traditional means for the public to offer its opinion to a public inquiry. In this case, the option of recording a submission was a modern variation on the theme. The taped submission was offered to those who called the Royal Commission's toll-free telephone line and wished to register their opinions verbally. 12 As a form of public involvement, however, written submissions and letters barely qualify. They certainly require very little effort on behalf of the Commission beyond announcing that the option exists. Letters are a one- way, static form of communication; there is no discussion or even an obligation on the part of the Commission to reply. The written submission or letter, despite its apparent simplicity, is not a highly accessible means of participation. To expect people not used to preparing official briefs or even in the habit of composing business letters, to construct an argument on new reproductive technologies is not reasonable.
Conclusion The private sessions constituted an important precedent for policy-oriented research into reproductive technology. BY allowing those with first hand experiences to discuss their perceptions with commissioners, the RCNRT acknowledged the need for involvement from the lay public in a way that met their needs and circumstances. ~0ththe private sessions and the written submissions were offered without the necessary support of a pubiic education campaign. Most importantly, both of these techniques suffer from the same failing as the public hearings in that none of them provided for a collection and debate of public views in a single or series of public forums. The summary of the private sessions was published in
May of 1992, only a few months before the Commission's then- expected reporting date of October and two months before the official deadline for written submissions. The Commission was publishing information after the most significant single opportunity to participate (the hearings) had passed and was offering no significant alternate means of participation for those who wished to respond to the emerging data and information. 4.5 Selected Stakeholder Consultations ~ntroduction This section deals with Commission consultations that were considered part of the participation program but which were less than fully "public." For these consultations, participants were selected and invited by the Commission. Also called the "Second RoundM by the RCNRT, most of these meetings were designed to fill in the gaps in participation and information left by the public hearings.'
A) Organizational Consultations The Commission's organizational consultations, also called Information Meetings, consisted of private meetings with selected national organizations and pharmaceutical firms "to explore their positions on new reproductive technologies or to obtain more detailed information or reasons for their suggestion^.^' Although promoted in the Guide to Public Participation in the Work of the Royal Commission on New Reproductive Technologies in answer to the question, "How do I communicate my views to the i om mission?"^, these meetings were not intended as a second set of public hearings and were not open to all who applied.' The impetus for these meetings came from a Commission analysis of who had and had not presented at the public hearings, as well as requests from groups who requested such meetings. Selection of organizations was based on the ~ommission~sjudgement that the groups. carry significant weight in the public policy realm, and the Commission needs to understand their positions and needs to ensure that they feel they have had adequate opportunity to provide input into the Commissionis work.' The above selection criteria would eliminate from consideration those groups who may offer an alternative assessment of NRGTs but have not achieved lisignificant weight in the public policy realm.li The established policy community is shown here to play an important role in the definition and legitimation of policy options available for consideration by a royal commission. For example, Louise Vandelac suggested that given the inordinate consensus during the public hearings for increased efforts on the prevention of infertility. the Commission needed more information on the kind of problems which prevent coherent work in this sector. Preventative health care is not an area that has established any kind of "weightw in the medical policy realm and, as Vandelac pointed out, no groups which could assist commissioners in developing a workable preventative health care model appeared on the proposed list of invitees.6 Organizational meetings were held over a period of a year from May 1991 to June 1992' with the following groups invited to appear: Alta Genetics Inc. Ares - Serono Group Canadian Advisory Council on the Status of Women Canadian Bar Association Canadian Medical Association Canadian Public Health Association Dalhousie University Fetal Tissue Transplantation Program Medical Research Council Ontario College of Physicians and Surgeons Pharmaceutical Manufacturers Association of Canada Royal College of Physicians and Surgeons of Canada Roussel-Uclaf Uniform Law Conference Vanier Institute of the Family.8 The National Action Committee on the Status of Women (NAC) was invited9 but by the time of the scheduled meeting had withdrawn its support for the Commission and was boycotting all of its activities." Of the fourteen groups listed, three were drawn from the pharmaceutical industry, six from the medical/research community and two from the legal community. The last three, the Canadian Advisory Council, the Canadian Public Health Association and the Vanier Institute, could be expected to speak to the social aspects of NRGTs from their own points of view; they also represented the only three groups who do not profit from NRGTs . One of the reasons for the inclusion of pharmaceutical industry representatives in this round of meetings was their absence from the public hearings which the Commission, given their significant stake and role in the development and practise of NRGTs, could not ignore. The initiation of private consultations with industry representatives was designed to fill this gap." The groundwork for these consultations was contracted to a public relations firm, Burson-Marsteller, a multinational public relations firm. The contract directed the company to: ...advise the Commission on how to prepare a major consultation exercise with the Chief Executive Officers and the research departments of the Canadian offices of the Canadian and multinational pharmaceutical companies ...advise the Commission on what companies and associations should be approached, how they should be contacted and whom, what the major issues and trends are within the industry ...I2 Burson-Marsteller counts among its clients several 'pharmaceutical firms13 which placed it in a serious conflict of interest in accepting this contract. In addition, the Commission's choice of a public relations firm to prepare for the industry sessions points to an approach to consultation that favours image over substance anG placation over debate. Given the Commission's reluctance to expend funds on the public hearings to ensure greater access for Canadians, the payment of $21,000'~to determine the best means of consultation with a single stakeholder demonstrates an imbalance in Commission priorities. The organizational ~~n~~ltati~n~were no doubt a necessary part of the Commission's work as each group possessed a specific expertise and certain information from which the Commission could benefit. These consultations, however, must be examined in the context of a larger consultation program which failed to take into account the expertise of the lay public and grassroots women's organizations. The list of organizations invited to appear simply mirrors the kind of relationships and vested interests at play around NRGTs. The Commission would find no
136 policy alternatives outside the status quo in these consultations.
B) Roundtable Discussions, Theme Consultations and Colloquia The Commissionls roundtable discussions, theme consultations and colloquia were sufficiently similar to warrant their evaluation together in this paper. All consisted of group meetings around a specific topic or theme, for example, donor insemination, child health and assisted human reproduction, or prenatal diagnosis. Attendance was by invitation only and transcripts were not publicly available." Meetings were scheduled in the period before the public hearings and continued after their completion. The Commission classified these "information" meetings as part of its program of "consulting Canadians.~~'~ According to a Commission memo, the theme consultations were designed to, "bring together interest groups, organizations, and individuals to assist the Commission to deliberate on (a) particular policy issue or area.ll" Some of the meetings were specifically called to fill in the gaps left by attendance at the public hearings, for example, the Commission's roundtable discussion with Aboriginal women in
I the ~orth." ~xaminationof the attendance at the majority of these meetings, as listed in the Final Report, demonstrates that they consisted almost entirely of consultations with "expertsw from academia, the legal profession and the medical and scientific communities. Of the 33 colloquia,
roundtables and theme meetings held, 3 could be said to focus on lay involvement and assessment of NRGTs: specifically, the roundtable discussions with the Aboriginal women's community, with users of donor insemination and with users of IVF.19 Apart from these three meetings, there seemed to be a reluctance on the part of the Commission to privilege the voices and perceptions of the lay public over those from traditional areas of expertise. One particular meeting is illustrative. A theme conference was held in August 1990 entitled, "The Impact of New Reproductive Technologies on Women's Reproductive Health and Well-Being.u20This meeting was referred to by the Commission as evidence that it had consulted with women's groups.21 In reality, attendance at the meeting, which was by invitation only, was an almost even split between representatives of the medical and scientific community and the women's community. Participants in this early meeting repeatedly challenged the Commission to find ways of hearing from unon-elites."22Other meetings where members of the grassroots women's community were invited to be "consultedn were similarly diluted with representatives from the legal, scientific and academic fields.23 The token representation of lay representatives and users of the technologies at this stage of consultations resulted in only nominal accountability to various recognized groups in Canadian society; one commissioner noted it was as if the Commission was seeking to appear !lmathematicallyequitable."" Although the Commission maintained that it had heard from, !!womenlsgroups, community groups, labour organizations, representatives of Aboriginal peoples and members of racial and ethnic minorities,"*' these groups were not given recognition as Mexpertsu in areas where the scientific community has typically dominated. For example, the Commission held a theme consultation on prenatal diagnosis. People with disabilities, especially those with disabilities "targeted'! by prenatal diagnostic tests, have a particular point of view and experiences to bring to policy planning in this area. No one from outside the conventional medical and scientific community was invited.26 In addition to diffusing lay involvement at this stage within uco-unity liaisons,"" the practise of attendance being by invitation only allowed participation to be well controlled. For example, a representative from a Vancouver womenls group, eager to bring news of the Commissionls work to her constituency, was consistently refused an invitation to the Womenls Health consultation described above." In addition, the classification of the meeting transcripts as confidential meant that new information and emerging policy frameworks could not be submitted to others for discussion and development.
Conclusion When this stage of consultations is evaluated as a whole, the representation of the medical, scientific, commercial and academic communities far outweighs any representation from the lay public. Policies to control attendance and the dissemination of information resulting from these meetings made this already restricted process all the more limited and secretive. The selection of groups entitled to private meetings with the Commission constituted a stark reminder of those who are widely considered to hold a special expertise in this area. In terms of the criteria of accessibility, education/information and opportunities for exchange, this process of selected stakeholder consultations simply replicated the current patterns of social power and legitimacy on NRGTs. 5.0 DISCUSSION Introduction The previous chapter examined each element of the RCNRTts public participation program. This chapter will seek to evaluate the program as a whole. In evaluating the RCNRT's program, it is evident that the Commission made efforts to "hearn women and consumers of these technologies. The end result, however, was that "hearingn was all the program achieved. While the panel discussions and the private sessions stand out as contributions to public involvement in technology assessment, they could not carry the whole participation program. Attempts to involve the public provided none of the resources, feedback, access or education and information necessary to allow the public the space and the tools necessary to engage in the process in a way that would have respected their perceptions and generated alternatives to the status quo. A distinction must be made between a participation process that provides for education and wide-ranging discussion of alternatives from a process that offers isolated opportunities for "input." The former constitutes a means of involvement in the identification of a problem and the determination of priorities for its solution. The latter process is directed towards an official body's need to collect "public input," a basic expectation of all public inquiries. This orientation requires only avenues for receiving opinion; it does not require attending to the differing needs and goals of public participants. This kind of process ends up being little more than a nominal accounting of public opinion. Attempts to involve the public by the Commission can be characterized as disjointed because of the lack of continuity of participation. The public hearings, according to Commission documents, were not meant to be the only means of involvement available. Other techniques and venues were initiated to make up for the acknowledged shortcomings of that process. Nonetheless, for many, the hearings remained the only way to access the Commission. Other consultations - theme conferences and information meetings - were by invitation only and were directed towards established groups of experts. Any group or individual who wanted to be involved with the Commission after the hearings had no means of doing so.
A) Public Relations or Public Involvement? Despite their being temporary assemblies of disparate people, public inquiries as organizations still acquire a raison dletre, a goal that overshadows all of its daily activities. This goal is its commitment to deliver a final report on time. Apart from just delivering a report, there exists pressure within a commission to see that its recommendations get implemented. After an intense effort of two years or more, to have a report ignored and forgotten is not a desirable goal. Martha Derthick described this pressure from her point of view as a member of the U.S. President Nixon's Commission on Campus Unrest. Derthick described a collective striving to realize the organizational aims of having the commission recommendations implemented and the resulting "calculation of the possiblem that occurred internally. The result was a voluntary limiting of the Commission's labours to those most likely to succeed and a tendency to favour unanimous reports requiring a back room process of negotiation and compromise.' The calculation of the possible can include a variety of considerations, among them, the government's current policy commitments (for example, deficit reduction). "Too much" public participation in this regard can be a complicating factor; given the accepted wisdom around lay perceptions of science, realistic and practicable recommendations were not, from the point of view of the Commission, likely to come from the public. Another aspect of the institutional need to survive is the need to control one's public image. Any commission, in issuing its final report, is engaged in a persuasive act. The report is the means by which a Commission must justify its existence and the expenditure of public funds. With the publication of its recommendations, the commission must try to convince the government and the public that it has completed a sound and fair process and has come to the best representation of the problem and its solution. The Commission must sell itself. For the RCNRT, the selling process began from the moment the Commission was mandated. With this self-promoting activity came a blurring of the functions and tasks of the public relations and public participation programs within the commission. Because "public inputn is such an important source of legitimacy for a commission, it was certainly in the RCNRT1s best interest to publicize its receptiveness and openness. Thus a Commission press release titled, "Royal Commission Undertakes Extensive Consultations Program to Seek Views and Experiences of All ~anadians~~~and a Final Report that is liberally sprinkled with quotes from "private citizens. n3 publicizing openness also serves the goals of a public participation program. Participants are more likely to come forward if they are assured of some degree of influence and sincerity. The conflict comes in the way in which the techniques of public relations are used. Public relations seeks to control the flow of inf0mIati0n in such a way that it produces a favourable image of a company, organization or individual. Control of information is not equivalent to information sharing. The latter constitutes a central tenet of good public involvement programs; the former quite often becomes misinformation. Two examples of misinformation already cited include the RCNRT1s publication of inflated rates of participation and the release of the results of a misleading poll. For another example, one can look to the representation of participation in the public hearings. According to a summary of the Commission's Final Report distributed widely to the press, 2,'000people were involved in the public hearing^.^ This number represents a significant expansion from the 550 cited in earlier reportsI5a number consistent with the lists and briefs published by the Commission. The source of the 2,000 figure is unclear unless those people who attended as observers were included as participants. While the advertising for the hearings and the public information kit might suggest that the Commission was simply poorly trained in the effective use of public mass communication techniques, other actions suggest that is was public involvement, not public relations, in which the Commission lacked expertise. Seminars on encountering the media were held for staff and commissioners at a cost of $17,500, not including travel expenses.6 An additional $37,000 was spent on a personal media and image consultant for Patricia ~aird.' The release of the Final Report is also illustrative. The Co-ission would release its Canadian infertility survey two days before it submitted its final report to government. The subtitle to the headline posed the question, "Are there ways to prevent this, and are there ways these couples can be helped?hith infertility thus positioned as a driving force behind NRGTs, this study constituted an important legitimation of the Commission's existence and relevance. In another decision that would affect the quality of analysis the Report would receive, the actual release of the Report was not accompanied by the customary press conference where journalists, having had embargoed copies for at least 24 hours, can pose some detailed questions. The Commission refused the Prime Minister's Office's requests for a press conference and instead invited half a dozen selec~ed reporters to an exclusive media briefing. These journalists received an executive summary of the Report and most of the immediate coverage was entirely extracted from that summary.9 The pressure on this Commission to "sell" itself and to legitimate its process were undoubtedly heightened by its internal crisis between commissioners and external problems with women's groups across the country. The risk of losing credibility contributed to the goals of public relations taking precedence over public involvement.
B) The Construction of "Credible Alternativesu The most important consequence of the RCNRT's consultation process was how it affected the development of and perception of legitimate alternative policy options. Political scientist E.E. Schattschneider noted that: the definition of alternatives is the supreme instrument of power; the antagonists can rarely agree on what the issues are because power is involved in the definition.lo
~f participating groups lacked the resources, the voice and standing to present "credible alternativesu to the Royal Commission, the only credible alternative was the one put forward by and currently in operation elsewhere in other areas of health care and in other Western industrialized nations - the biomedical model, a model which simply perpetuates the traditional control of medicine and medical technology. The phrase, "credible alternativeu is borrowed from Richard Simeon1s observations as a research coordinator for a previous public inquiry, the MacDonald Royal Commission." The MacDonald Commission had several things in common with the RCNRT. Both were presented with very broad mandates and were expected to bring forward policy recommendations through an intensive research process. Both faced concerted opposition from outside observers even before their recommendations were issued. (The publication of The Other MacDonald Report appeared before the publication of the MacDonald Final Report. The preparation of Misconceptions: The Social construction of Choice and the New Reproductive and Genetic ~echnologieswas widely reported before the
RCNRT'S Final Report.) Both faced accusations of being hijacked by business interests on the one hand, pharmaceutical companies and the medical community on the other. Simeon acknowledged the largely pro-business and market
orientation of the MacDonald Commissionls Final Report, yet he maintains that a hijacking was not necessary to achieve this result. Instead, the report's free market orientation was a logical and rational answer to the problem as it was interpreted by commissioners. The definition of the problem required an answer which would be economic, which would break from the past and which would seek to make Canada competitive and productive. Given this definition, the neo- classical model became the only credible alternative available to the Commission; only the neo-classical model dealt with all the challenges identified in the problem definition.'* AS discussed in section 3.3, the RCNRT1s mandate defined the "problemN in such that a way that precluded any consideration of whether or not NRGTs, as they existed, were the kind of technologies desired by Canadians. A reading of the Final Report suggests that this was indeed the approach adopted by the commission. In two sections entitled, "Alternatives" and "Options Considered," the Commission described its deliberations On questions of access, allocation of resources and safeguards - all issues of technology management that beg the question of their origin and development.13 When the RCNRT was called, there existed only one well- articulated policy model for dealing with the expansion and development of a new medical technology - the biomedical model. Reports already written by numerous other similar inquiries in Western industrialized nations had adhered to this model;14 this Commission studied the conclusions of these reports, but did not question them.'' In the research program, this approach manifested itself in the discrete medical and scientific categories into which projects were slotted. "The technologies drove the research categories and any other classification of research subject was rejected. "I6 The only other academic community where there had been significant debate and discussion of the issues around NRGTs was the feminist one and this debate had not yet proceeded to a firm delineation of policy. l7 If the biomedical model was the only current and legitimate model in place before the ~~mmissionbegan its work, then in many ways, the feminist model was articulated in direct opposition to it. Co-ission research plans show that it often sought out two points of view on a subject - the "mainstreamn one and the "feminist" one." The feminist model challenges many assumptions of the biomedical model, including that knowledge is value-neutral and that technological
"advances" do not always equal "progress." A good example of this oppositional stance came in the National Action Committee on the Status of Women's brief to the Royal Commission which included a much-publicized recommendation for a moratorium on IVF. In the media, the opposition of these positions would be resurrected as "science versus feminism" during reporting of the suit laid by the four commissioners against the chair.I9 This oppositional stance meant that, for the feminist critique anyway, its views faced an uphill battle against the institutionally supported and socially legitimate views of biomedicine. The common view that the feminists were "Luddites" and rejected all technology2' would make this position more easily dismissable on the grounds that it did not deal with the technology as it exists and how it could best be managed. The biomedical model is consistent with the "Yes, butu response to reproductive technology the Commission
constructed in its Final Report. (See section 3.5.) The broad implications of the Final Report were that science, technology and medicine simply needed to be conducted in a more rigorous way by the same people who had managed it in the past. Part of the reason for this particular approach to technological development and assessment can be located within a public participation program which sought to contain public debate more than it allowed it to gain voice and standing. C) An Emerging Alternative Without an alternative model, the RCNRT could have worked towards the development of alternative policy frameworks in two areas: its research and its participation programs. Yet the public involvement process as it was organized did not allow for the development and legitimization of other alternatives for managing science. While any public intervenor could and certainly did put forward policy recommendations, the question here concerns the establishment of credible or legitimate policy alternatives. A policy's credibility, in part, is derived from its clear articulation and its support from groups with social standing and voice. The kind of participation opportunities offered by the Commission left any potential alternative policy framework from the lay public latent and diffuse. Already, however, some work has emerged which seeks to give voice to this latent public vision. Jasmin Habib and
Lorna Weir isolated 68 briefs to the RCNRT which they identified as "feminist" and proceeded to examine them for common upon which could be built a feminist policy framework for reproductive technologies ." They successfully discovered much basis for agreement from among a broad-based and wide ranging set of briefs as well as areas which needed further development and discussion. The alternative policy framework is described by the authors as counterhegemonic for its opposition to current health care policies and practices of bioscience and the state.22characteristic of this framework was the way in which the context of women's health care, both historical and current, was considered directly relevant to the way in which NRGTs were assessed. The historical context was demonstrated in the recounting of the DES, thalidomide and the Dalkon Shield stories. The issues of contraception and the current experiences of hospital childbirth, although not explicitly within the C~Inmi~~ion'~mandate, were considered part of the entire continuum of reproductive care upon which NRGTS were placed. NRGTs and questions of access and regulation could not be isolated from current issues around lack of access to abortion, contraceptive care and the social support of pregnant WOmen. These briefs illustrate what Brian Wynne identifies as characteristic of lay asseSSmentS of science (see section
2.2) which include the "complete discourse of sciencew - its patterns of ownership, control and ~rganization.~~
Technology was not rejected outright by the authors of these briefs. Instead, what was at question in these briefs was the credibility of the institutions managing technology on women's behalf. One of the areas which the authors identified as a collective weakness of the briefs was their adoption of the consumerls perspective on NRGTs, a perspective which translated into an emphasis on the doctor's office as the site for receiving health care.24While the care one receives in such a setting is partially attributable to the individual doctor, it is also the consequence of a series of decisions made in more hidden areas of the health care system: research funding bodies, researchers, pharmaceutical firms, medical technology firms, provincial and federal governments, medical schools, hospitals and ethics boards, etc. The authors attributed this perspective to a general atmosphere of professional and official secrecy in the area of health." None of the information provided by the Commission, either in its kits Or panels, shed any light on these areas of the health care system. By default, the consumer perspective and the biomedical model of paternalistically protecting the patient/consumer held forth. The work of Habib and Weir is significant for two reasons. First, quite simply, for its contribution towards the identification of an emerging and viable policy alternative to the biomedical approach to managing technology. secondly, this work illustrates the latent nature of this alternative. The fact that their paper required considerable work and analysis demonstrates to what extent this emerging policy alternative would not be immediately obvious to those espousing it. The authors state that the briefs, "remain as publicly inaccessible resources because they have not been widely or commercially
distributed. "26 ~utto credit Habib and Weir with their effort is not to suggest that the same clear articulation could not have
been accomplished by the writers of the briefs themselves. A process of participation which allowed for and welcomed future meetings with a goal of further refining differing sets of emerging policy alternatives and visions could have gone a long way towards making not only latent feminist policy frameworks more evident. Undoubtedly, the Commission conducted its own analysis of the briefs and the information they contained. This analysis, however, is not in the public domain and belongs to the confidential process of Commission decision-making.
D) Mandated participation A towards established policy frameworks has implications for the role of royal ~ommissions, particularly for the part public inquiries play in structuring and legitimizing knowledge. While explicitly called upon to "make policy," royal commissions do much more; a commission performs an important defining role by giving a "proper name, a rational cause and a reasonable solutionu to any social This defining potential of royal commissions is even more compelling when one considers that the kind of issues which they are asked to adjudicate are rarely of a purely technical nature, but always involve some measure of contention between experts and "interestsu. The Commission is asked to determine whose knowledge is relevant and whose interests and opinions will go into forming this knowledge. Christopher Plein states that: issue definition is not so much a process of ~~ecificationas it is a process of establishing associations with other issues prominent on the political agenda.28 The work of Habib and Weir demonstrates that for at least one segment of society, NRGTs were clearly associated with past failed medical interventions and abuses of Dower and research. rf the prcblem for the lay public is one of possessing enough power to influence issue definition and alternatives, we return to the question of political resources embodied in the discussed throughout this case: information/education, accessibility, resources, and feedback/opportunities for exchange. And once again, we return to the commission as both the source and agent responsible for managing these resources and opportunities.
1f we assume that royal c~mmissionsare open-ended, ad hoc inquiries seeking out all possible policy alternatives, then they are bound to enable public participation to this end. ~f we assume that royal c~mmissionsoperate within a web of pre-existing relationships, vested interests and established policy frameworks, then public participation need to be enabled only in SO far as it supports the status quo. Of course neither assumption can be fully applied to any royal commission because both can be true, to a certain degree, of different commissions. In whatever way a commission will decide to enable public involvement, the fact remains that the choice and the power to do so remains entirely with the commission itself. Public involvement in public inquiries constitutes "mandated
participation" - participation allowed and enabled by the state. Without set standards for public accountability, transparency or participation, the extent of this mandated participation constitutes an internal commission prerogative. Habib and Weir noted the relative inaccessibility of RCNRT briefs. One reason for this lack of distribution certainly lies in an implicit hierarchy of commission work. What counts in a commission is the inquiry's assessment and filtering of all submissions, not the individual submissions themselves. ~~thorityfor interpretation and writing lies entirely with commissioners. The process is not a transparent one as commissioners mediate the relationship between public "inputn and the final analysis. Public
hearings are not looked Upon as places to look for sources of policy initiatives. Consider the comments of Alan Cairns, a member of the ~~c~onaldcommission on their hearings: The hearings process gave Commissioners a sense of confidence and a feeling for the vastness and diversity of the country that not all Commissioners had previously experienced. It informed Commissioners of the political viability of prospective policy proposals. It highlighted phenomena, such as the strength and vigour of the womenls movement, that might otherwise have had a lesser visibility. On the other hand, a commission whose agenda focuses on the long run may be pulled too far in the direction of contemporary politics by the pressures of the immediate issues that typically dominate the personal agenda of petitioners.29 Cairn1s comments illustrate the boundaries placed around public participation. It is seen as an elaborate public opinion poll, allowing commissioners to gauge the acceptability of various policy options. The hearings ~onstitutea learning experience for the Commissioners - not for participants. This approach was reflected in the work of the RCNRT which looked for others to validate and confirm its impressions of public opinion: Our analysis of the extensive data and research gathered during the course of our mandate leads us to conclude that public concerns about the need for effective social control of the use of these technologies are j~stified.~' The incredible loss of opportunity of this kind of approach to public participation is expressed by two writers on public inquiries: ...is it not possible that the countless hours spent by witnesses and organizations in preparing for and testifying before inquiries will have no other consequence than to Create a vague sense in the commissioners' minds of the nature of the problem they are investigating; a sense that will be articulated only in rather general directives to those drafting the report? This seems an inadequate outcome for a vast expenditure of money and eff~rt.~' The lack of transparency and accountability carries over into the "black-boxMmethod of report writing where. most often, the public constituencies lose the most in representation of its views.
Conclusion In sum, the Commission's participation process was not without positive outcomes. In allowing and giving some space, albeit limited, for a critique and discussion of these technologies, the Commission provided for a degree of public education, discussion and mobilization of some
"disruptive discoursesf' - language and ideas that undermine dominant thinking.12 Dissatisfaction with the Commission had the positive outcome of establishing two new women's groups - the Vancouver Women's New Reproductive Technologies coalition and the National Health Alliance. In addition, many of the omm mission's recommendations, especially with respect to conditions of license for NRGT practitioners and researchers, can be traced to concerns voiced during the public hearings. The Commission's public participation program forced concessions in a way that would not have been possible without any voice at all for public groups. The means of public involvement provided, however, did not allow for a development of a strong enough "critical massw of public opinion and alternative visions that would have been equal to or comparable to the established interests and experts. Maureen McTeer, one of the commissioners fired from her post, observed that her position on the Commission taught her: how narrow, powerful and entrenched the economic stakeholders involved in these issues really are ...it will be crucial that the Commission's final report be seen as merely the views of one set of stakeholders. . .33 The public participation program simply did not provide the resources to enable a public engagement with these kind of entrenched interests. A regulatory process centring on the deconstruction of science threatens the legitimacy of political as well as scientific decision-making.34 The public participation process of the Royal commission on New Reproductive Technologies did not centre on the deconstruction of science or scientific decision- making. The limited opportunities for involvement denied the value of the public perception of science and contained participation within the consumer or user model, preventing significant public input into issues of research priorities and management. 6.0 CONCLUSION: IMPLICATIONS FOR PUBLIC INQUIRIES The evaluation of the RCNRT1s public participation program in many ways repeats the pattern of public involvement in previous public inquiries. Returning to the discussion in section 2.3 of some of the characteristics of public inquiries reveals that many of them played a role in this Commissionls work. commissions operate within an entire web of pre- existing relationships and institutions with more decision- making power than itself. The RCNRT, like many commissions, could not completely extricate itself from this web, with the result, as Salter explains, that the internal contradictions of inquiries are resolved in a way that favours reformist policies, shifting conventional wisdom slightly to one direction or another. In addition, the unavoidable ad hoc nature of inquiries with the pressures of organization and time that it presents played a role in limiting extensive and innovative participation programs. Reports from the RCNRT staff of confusion, lack of direction or clear instructions' are not new in the world of commission^.^ "Learning while doing" is the rule and there is frequently only one chance to get it right. Time pressures also presented their own challenges. A member of the ~acDonaldCOITI~~SS~O~ explained how time constraints translated into less time for original research and more emphasis on Surveys of existing studies and "dominant intellectual orientations.~~The same emphasis on existing models and knowledge appears to have occurred within the RCNRT.' Stated simply, setting up avenues for receiving public input require less planning, consultation, time, staff and effort than does setting the groundwork for a broad public discussion on a new approach to the management of science and technology. The lack of an established accountability mechanism for public inquiries constituted another limitation. Without an explicit and committed decision on the part of the commission chair to be accountable to the public and to have lay involvement in all aspects of the mandate, there is no way to guarantee that there will be any effort to seek public involvement. While a move towards an increasingly open and accountable process for royal commissions might be called for, efforts to rationalize political processes generally ignore the strength of informal networks and established policy communities. While increased standards of transparency of information-sharing can redress this situation somewhat, their eventual success is uncertain.
The preceding evaluation also points to the need for better ways to assess technologies, before they come into widespread use and become well-entrenched. The construction of technological choice, once established, can be a significant obstacle to overcome. The public discussion around the RCNRT was partly moulded by NRGTs and the way in which they had been developed. NRGTs had been promoted as services for the infertile in Canada for years already before the Commission began its work. The debate, before the Commission started, had been formulated as for or against the technologies as currently provided.' A policy debate where the alternatives are a wholesale "yesfior "non is a limited one indeed. When it came time to assess the technologies, to judge whether or not they were effective and safe treatments for infertility. the question would inevitably arise, "compared to what?" The practical reality was that for women or couples suffering from infertility. there were no alternatives to invasive, dangerous reproductive technologies with low success rates. By default, the issue became one of "freedom of choice." After its presentation at the public hearings, NAC was portrayed as denying "choiceM to infertile women and the media discussion was firmly entren~hed.~ A few groups tried to advance the debate beyond "choice," to "what those choices are and how can we influence those choices. "'Certainly, this perspective was part of the alternative framework drawn out by Habib and Weir. Admittedly, it is inherently difficult to have a discussion of technological alternatives when the desired alternative does not exist. While the mere existence of NRGTS does not mean that they are the only possible means of dealing with infertility, no other options have been developed. While the reasons for the lack of alternative technology development can be traced back to various institutional and socio-political factors, the mere fact of their non-existence constitutes an obstacle to discussion. Ruth Hubbard, in an essay on prenatal diagnosis, wonders how women can reassert control over a technology that determines the future of their pregnancies. There is a real question of how to ...stimulate a desire to control science and technology, in people to whom nature is utterly abstract, and to whom science and technology, though alien and overpowering, are part of the daily environment ...how to make people understand the need to make choices about whether to devise and implement technologies, when technology is much more real and "God-givenwto them than are the natural functions for which technologies are meant to substitute or on which they are meant to expande8 Hubbard's dilemma is instructive in that it transcends any policy making mechanism but has instead to do with our collective attitudes toward the natural world and technology. Certainly, the royal commission is no answer to this problem. Notes for Chapter 1
1. Brian Wynne, "Public Understanding and the Management of Science," 148. 2. Jean-Jacques Salomon, 'Une Evaluation de lUEvaluation Sociale des Technologies," 17-20; Paul S~OV~C,"Perception of Risk," 280.
3. Organisation for Economic Co-operation and Development, Technology on Trial : Public Participation in Decision -Making Related to Science and Technology, 11. 4. Connie Ozawa, Recasting Science: Consensual Procedures in Pub1 i c Pol i cy Making, 8 - 12 .
5. Frank Fischer, Technocracy and the Politics of Expertise, 17- 9.
6. Morton Mintz, At Any Cost: Corporate Greed, Women and the Dalkon Shield. 7. Philip J. Frankenfeld, "Technological Citizenship: A Normative Framework for Risk Studies," 460.
8. Frankenfeld, wTechnological CitizenshiplV 463.
9. Royal ~omrnissionon New Reproductive Technologies (RCNRT), A Guide to Public ~articipationin the Work of the Royal Commission on New ~eproductiveTechnologies, 3. Notes for Chapter 2.1
1. Organisation for Economic Co-operation and Development (OECD), Techno1ogy on Trial : Public Participation in Decision -Making Related to Science and Technology, 7. 2. Gregory A. Daneke. "Introduction,1111; Roger E. Kasperson, "Six Propositions on Public Participation and Their Relevance for Risk Communication," 275. 3. Sherry ~rnstein,"A Ladder of Public Participation," 218-25.
4. Arnstein, ,"ALadder of Public Participation," 216. 5. Arnstein, "A Ladder of Public Participation," 216. 6. Arnstein, "A Ladder of Public Participation," 216.
7. Michael Pollak, "Public Participation," 83. Pollack cites the delayed construction of a coal-fired power plant in FDR, the cancellation in 1977 by Dew Chemical of a new complex in Solano, California, and the abandonment by Standard Oil of a refinery proposal for Long Beach, California. 8. Pollack, "Plrblic participation," 84. 9. Pollack, "Public participation," 88. 10. Pollak, "Public Participation," 90. 11. Kasperson, "Six Propositions on Public Participation," 276; and ~udyB. Rosener, '!User-Oriented Evaluation: A New Way to View Citizen ~articipation,"592. 12. OECD, Technology on Trial, 12. 13. Kasperson, "Six ~ropositionsOn Public ParticipationIw276. 14. Rene Parenteau, public Participation in Environmental Decision -Making, 5. 15. OECD, Technology on Trial, 15. Notes for Chapter 2.2
1. G. Bruce Doern and Richard Phidd, Canadian Public Policy: Ideas, Structures and Processes, 34.
2. G. Bruce Doern, Science and Politics in Canada, 167-8.
3. Oorganisation for Economic Co-operation and Development (OECD), Technology on Trial, 7. 4. Robert H. Blank, Regulating Reproduction, 196.
5. OECD, Technology on Trial, 17. 6. Jon D. Miller, The American People and Science Policy: The Role of Public Attitudes in the Policy Process, 2.
7. Connie Ozawa, Recasting Science: Consensual Procedures in Public Policy Making, 6. 8. Michael Mulkay, Science and the Sociology of Knowledge, 99. 9. R.G.A. Dolby, "On the Autonomy of Pure Science: The Construction and Maintenance of Barriers between Scientific Establishments and Popular Culture," 270. 10, Sheila S. Jasanoff, "Contested Boundaries in Policy-Relevant Science," 201. 11. Jasanoff, "Contested BoundarieslM201. 12. Jasanoff, "Contested Boundaries," 199.
13. For a critique of the ideal of the scientific method and its use in developing and maintaining the authority of science see, for example: Barry Barnes and David Edge, eds., Science in Context, Cambridge: MIT Press, 1982; R.C. Lewontin, Biology as Ideology, concord, Ont . : Anansi, 1991; Michael Mulkay, Science and the Sociology of nowl ledge, Boston: George Allen & Unwin, 1979. 14. Ozawa, Recasting Science, 8. 15. Dorothy Nelkin, "~ontroversiesand the Authority of Science," 283. 16. Alonzo Plough and Sheldon Krimsky, "The Emergence of Risk Communication Studies: Social and Political Context," 4-10. 17. Diana B. DuttOn, "Medical Risks, Disclosure and Liability: Moving toward ~nformedConsent." 18. Royal omm mission on New Reproductive Technologies (RCNRT), Proceed with Care, Vol.1, 94. 19. See for example, Claudia Dreifus, ed., Seizing our bodies: The politics of women's heal th, New York: Vintage Books, 1978; Elizabeth Fee, ed., Women and Health: The politics of sex in medicine, Farmingdale, NY: Baywood Publishing Co., 1983; and Anne Witz, Professions and Patriarchy, New York: Routledge , 1992. 20. See for example: B. Barnes and D. Edge, eds., Science in Context: Readings in the sociology of science, Cambridge, MA: MIT Press, 1982; D.O. Edge and J.N. Wolfe, eds., Meaning and Control: essays in social aspects of science and technology, 1973; and E. Mendelsohn, S. Weingart and R. Whitley, eds., The Social Production of Scientific Knowledge, 1977. 2 1. Mulkay, Science and the Sociology of Know1 edge, 61.
22. Mulkay, Science and the Sociology of Knowledge, 3 -4. 23. Margaret Benston, "Feminism and the Critique of Scientific Method, 63. 24. Richard C. Lewontin, Biology as Ideology, 45.
25. Lewontin, Biology as Ideology, 46.
2 6. Sheldon Krimsky and Alonzo Plough, Environmental Hazards : Communicating Risks as a Social Process; Charles Perrow, Normal Accidents: Living with High-Risk Technologies; Brian Wynne, "Knowledges in Context," "Public Understanding and the Management of Science." 27. plough and Krimsky, "The Emergence of Risk Communication Studies," 7-8. 28. Perrow, Normal Accidents, 308, 321-23.
29. Wynne, "Public understanding and the Management of ScienceIw 145. 30. Wynne, "Public understanding and the Management of Science? 145. 31. James F. Short Jr., "The Social Fabric at Risk: Toward the Social rans sf or mat ion of Risk Analy~is,~714-16. 32. Wynne, "Knowledges in Context," 120. 33. Wynne, public understanding and the Management of Scien~e,~ 166. 34. Sheila Jasanoff, "Public participation in science p~licy,~ 370. 35. Abby Lippmann, "Prenatal Diagnosis: A Chance for Action- Research?" 67-8. Notes for Chapter 2.3
1. Liora Salter and Debra Slaco, Public Inquiries in Canada, 25. 2. Innis Christie and A. Paul Pross. "IntroductionItt1.
3. Christie and Pross, "IntroductionItt8.
4. Alan Cairns, ttReflectionson Commission ResearchItt91. 5. For example, The Citizens's Forum on Canada's Future, chaired by Keith Spicer, embarked upon a series of grassroots discussion groups and experimental focus groups which would have been difficult to institute through a traditional government department or agency. See Citizens1 Forum on Canada's Future, Report to the People and Government of Canada, Ottawa, Minister of Supply and Services, 1991, 17-28. 6. Salter and Slaco, Public Inquiries in Canada, 21-2. 7. Sylvia ~ashevkin,"Does public opinion matter? Tho adoption of federal royal commission and task force recommendations on the national question, 1951-1987," 391.
8. A. Wayne MacKay, "Mandates, Legal Foundations, Power and Conduct of Commissions of ~nquiry,"35. 9. Harry A. Wilson, Commissions of Inquiry: A Handbook of Operations, 31-2.
10. Russell J. Anthony and Mastair R. Lucas, A Handbook on the Conduct of Public Inquiries in Canada, 52.
11. Liora Salterl !'The Two Contradictions in Public Inquiries, 174. 12. Barry Checkoway, "The Politics of Public Hearings," 567-72. 13. Gregory A. Daneke, "1ntroductionIM17. 14. Salter, "The Two contradictions in Public InquiriesIu 191.
15. Salter and Slaco, public Inquiries in Canada, 17. 16. Science Council of Canada, Regulating the Regulators: Science, Values and ~ecisions,35. 17. Adam Ashforth, 'l~eckoningSchemes of Legitimation: On Commissions of Inquiry as Power/~nowledgeFormsIu 12. 18. Organisation for Economic Co-operation and Development (OECD), Technology on Trial, 68-75.
19. OECD, Technology on Trial, 69-71.
20. Salter, "The Two Contradictions in Public InquiriesIw 175-6.
21. Salter, "The Two Contradictions in Public Inquiries," 191.
22. Salter, !!The Two Contradictions in Public InquirieslU187-92.
23, Salter and Slaco, Public Inquiries in Canada, 15.
24. Salter and Slaco, Public Inquiries in Canada, 221.
25. Richard Simeon, "Inside the MacDonald Comrni~sion,~169.
26. Salter, "The Two Contradictions in Public InquiriesIn 181-2.
27. John J. Rodger, "Natural justice and the big public inquiry: a sociological perspective," 411.
28. Salter, "The Two contradictions in Public Inquiries," 183. Notes for Chapter 2.4
1. David R. Godshalk and Bruce Stiftel, "Making Waves: public Participation in State Water Planning," 599.
2. Godschalk and Stiftel, "Making Waves," 599.
3. Connie Ozawa, Recasting Science: Consensual Procedures in Public Pol icy Making, 98 - 9.
4. Ozawa, Recasting Science, 9.
5. Ozawa, Recasting Science, 100-1.
6. Ozawa, Recasting Science, 100.
7. Ozawa, Recasting science, 100.
8. Rene Parenteau, Public Participation in Environmental Decision -making, 57.
9. Parenteau, Pub1i c Participation in Environmental Pzci sion - making, 57.
10. parenteau, Public Participation in Environmental Decision - Making, 57.
11. parenteau, public participation in Environmental Decision- Making, 63.
12. Salter, "The Two Contradictions in Public InquirieaIff179-81.
13. David Noble, "Present Tense Technology, Part Threeu, 88-9. Notes for Chapter 3.1 1. Thelma McCormack, "Public Policies and Reproductive Technology: A Feminist Critique," 361. 2. Somer Brodribb, "Off the Pedestal and Onto the Block? Motherhood, ~eproductiveTechnologies and the Canadian State," 408.
3. Annette Burfoot, "From Cow Shed to Clinic: Veterinary Science and the New ~eproductiveand Genetic TechnologiesIN113-17. 4. Patricia Spallone and Deborah Lynn Steinberg, Made To Order: The Myth of ~eproductive and Gene tic Progress, 23 . 5. Thomas Stephens and Associates, Highlights from Survey of Canadian ~ertility Programs, 5. 6. Bartha Knoppers, "Women and Reproductive Technol~gies,~212-3. 7. McComack, "public Policies and Reproductive TechnologyIu361- 2. 8. Janice G . Raymond, Women as Wombs: Reproductive Techno1ogiss and the Battle over Women's Freedom, 3. See also, RCNRT, Proceed with Care, Vol.1, 192.
9. RCNRT, Proceed with Cdre, Vol. 1, 180. 10. Canadian Research Institute for the Advancement of Women (CRIAW), Our Bodies ...Our Babies?; DES is a synthetic hormone that was prescribed to pregnant women for a variety of symptoms. ~t was removed from use when adverse effects, including cancer, infertility and pregnancy problems, were discovered in the mothers and their children. See, Harriet Simand, "Fifty Years of D.E.S. - ~iftyYears Too Many," in The Future of Human Reproduction, C. Overall, ed. Toronto: The Women s Press, 1989. 95-104. 13. Abby Lippmann, "Prenatal Diagnosis: Reproductive Choice? Reproductive Control?" 187. 14. See for example, Gwynne Basen, Margrit Eichler and Abby Lippmann, eds . Misconceptions: The Social Construction of Choice and the New Reproductive and Gene tic Techno1ogies. 15. Ruth Hubbard and Elijah Wald, "The Eugenics of Normalcy: The politics of Gene Research," 185-89. 16. R.C. Lewontin, "The Dream of the Human Genome," 33-4. 17. See for example, "21st century cure: a jolt from the gene gun," Globe and Mail. 30 June 1992, Al; "Science upends Pandora1s box," Globe and Mail, 24 July 1993, Al. Also, Ruth Hubbard and Elijah Wald, "The Eugenics of Normalcy: The Politics of Gene Research," 185.
18. Varda Burstyn, "Breeding DiscontentIn 182-3. 19. Thelma McCormack, "When in Biology Destiny?" 83. 20. See McCormack, "When is Biology Destiny?" 86-91; Heather Menzies, "Test Tube Mothers Speak," 8-11. 21. Diana B. Dutton, "Medical Risks, Disclosure and Liability," 51.
22. RCNRT, Proceed with Care, Vol.1, 33. 23. Jocelynne A. Scutt, "The Politics of Infertility counsell ling,'" 251-2.
24. Andrea L. Bonnicksen, In Vitro Fertilization: Building Policy from ~aboratoriesto Legislatures, 29-36; Deborah Lynn Steinberg, "The ~epersonalizationof Women through the Administration of In Vitro ~ertilisation," 90-92.
25. See for example, Jan Rehner, Infertility: Old Myths/New Meanings; Heather Bryant, The Infertility Dilemma. 26. Sandra A. Goundry, "The New Reproductive Technologies, Public Policy and the quality Rights of Women and Men with Disabilities," 160. 27. Maria ~arile,!!New ~eproductiveTechnology: My Personal and political Dichotomy," 61-2; Goundry, "The New Reproductive Technologies," 163-4. 28. Annette Burfoot, "The Normalization of a New Reproductive Technology," 60-1. 29. New York Times 19 April 1992, sec. F.
30. Varda Burstyn, "Breeding Discontent," 186. Notes for Chapter 3.2
1. Bartha Maria Knoppers and Elizabeth Sloss, "Legislative Reforms in Reproductive TechnologyIfi666. 2. Margrit Eichler, "Some Minimal Principles Concerning the New Reproductive TechnologiesIn227.
3. RCNRT, Proceed wi th Care, Vol . 1, 1- 2.
4. Liora Salter and Debra Slaco, Public Inquiries in Canada, 21; and John Childs, "Canadian Royal Commissions of Inquiry, 1946 to 1962: An Investigation of an Executive Instrument of Government," 26-7. 5. Canadian Coalition for a Royal Commission on New Reproductive ~echnologies,Correspondence to Coalition supporters, June 27 1987 to November 1988; and "Royal commission on reproduction sought, Globe and Mail, 29 March 1988, AS. 6. Sue Cox, personal interview. 7. ~ouiseVandelac, "From Bird to Baird: Les commissions royales se suivent mais ne se ressernblent pas."
8. ~anadianCoalition for a Royal Commission on New Reproductive ~echnologies. "Proposed Mandate," February 1988. 9. Connie Clement and Diana Majury, "Interview: Visions for Women's Reproductive Care," 19. 10. Canadian Coalition for a Royal Commission on New Reproductive Technologies, Correspondence to supporters, 14 December 1987. 11. Patricia Spallone, "Reproductive Technology and the State: The Warnock Report and its ClonesIn 166-83. 12. Spallone, "Reproductive Technology and the State," 168-9.
13. "~nquiryto look at reproductive te~hnology,~Globe and Mail, 4 April 1989. Notes for Chapter 3.3
1. RCNRT, Proceed with Care, Vol. 1, 22.
2. Liora Salter and Debra Slaco, Public Inquiries in Canada, 205.
3. Connie Ozawa, Recasting Science: Consensual Procedures in Public Policy Making, 82 - 4.
4. Harry A. Wilson, Commissions of Inquiry: A Handbook of Operations, 10.
5. '~ilson,Commissions of Inquiry, 6,
6. RCNRT, Proceed with Care, Vol. 1, 3. 7. Salter and Slaco, Public Inquiries in Canada, 34.
8. Salter and Slaco, Public Inquiries in Canada, 137.
9. John B. ~cKinlay,"From 'Promising Report1 to 'Standard Procedure1: Seven Stages in the Career of a Medical Innovation," 385.
10. RCNRT, Proceed with Care, Vol.1, 3. 11. National Action Committee on the Status of Women, "A Handmaid's Tale," Brief to the Royal Commission on New Reproductive ~echnologies. 12. ~bbyLippmann, member of the Coalition, cited in Heidi Walsh, "Tight Lips Sink Ships."
13. "Reproduction Study called chance to learn," Vancouver Sun, 26 October 1989, B6. 14. The Coalition for a Royal CO~~~SS~O~on New Reproductive Technologies, "Proposed Mandate." 15. Adam Ashforth, "Reckoning Schemes of Legitimation: On Commissions of Inquiry as Power/Knowledge FormsIu 14. 16. Wilson, Commissions of Inquiry, 6. 17. Alan C. Cairns, "Reflections on Commission Research," 92.
18. Ashforth, "~eckoningSchemes of Legitimation," 9.
19. RCNRT, "~iographicalNotes on commissioner^,^ ~ugust1990. Notes for Chapter 3.4
1. RCNRT, Proceed with Care : Final Report of the Royal Commission on New Reproductive Technologies, Main Topics, 2 8.
2. Canadian Press, "Commissionlscost rises," Vancouver Sun, 25 February 1994, A8.
3. RCNRT, Proceed with Care, Vol . 1, 8 - 9. 4. RCNRT, Proceed with Care, 137-9; RCNRT, Update (August 1992): 1.
5. Innis Christie and A. Paul Pross, MIntroduction,M7.
6. Maureen McTeer, Martin Hebert, Louise Vandelac and Bruce Hatfield vs. the Queen, the Attorney of Canada and Patricia Baird. Federal Court Statement of Claim (T303591), 6 December 1991.
7. McTeer et al. vs. the Queen, Schedule 3 (letter from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac to P. Baird). 8. McTeer et al. vs. the Queen, Schedule 9 (Order-in-CouncilP.C. 1990-1801). 9. McTeer et al. vs. the Queen.
10. "Feminists' bias cited in firings," Vancouver Sun, 17 December 1991, Al. 11. Barbara uteck, Director of Operations, Privy Council Office, cited in Heidi Walsh, "Tight Lips Sink Ships." 12. "Willing to hang in there, Baird says in wake of lawsuit- end," Vancouver Sun, 25 February 1993, A3. 13. M. Eichler, ranken en stein meets Kafka: The Royal Commission on New ~eproductiveTechnologies," 204-5; "Royal Commission researcher calls experience a nightmare," Globe and Mail, 12 November 1993, A2; "Critics doubtful about report on technology," Vancouver Sun, 13 November 1993, A4. 14. Eichler, ranken en stein Meets Kafka," 210,
15. Coalition for a Royal Commission on New Reproductive Technologies, "~riefingPaper on the Research Program of the Royal Commission on New Reproductive Technologies." The conflict of interest concerned Burson-Marsteller, a public relations firm that represents pharmaceutical companies, being contracted to do research on the commercial involvement in NRGTS. 16. nCommission criticism based on out-of-date information," Letter to editor from P. Baird, Vancouver Sun, 8 February 1992, B4.
17. National Action Committee on the St3tus of Women, "NAC Calls for Disbanding and Boycott of Royal Commission on New Reproductive Technol~gies,~press release, 4 February 1992.
18. Dr. Robert Stebbins, President of the Social Science Federation of Canada, cited in a SSFC press release, 22 June 1992.
19. Carmen Lambert and Marcel Lauziere, vCommission Baird: Jusqulou science et secret peuvent-ils faire bon menage?" 6.
20. RCNRT, Update (August 1992).
21. Eichler, "Frankenstein meets Kafka," 212.
22. Eichler, "Frankenstein Meets KafkaIn 215-17.
23. Walsh, "Tight Lips Sink Ships."
24. Anonymous, "Inside the Royal Commi~sion,~227-32.
25. Alan Cairns, "Reflections on Commission Research," 91.
26. RCNRT, "Royal Commission on New Reproductive Technologies Announces Appointment of Director of Research and EvaluationIn press release, 15 August 1990.
27. "~eproductionpanel lashed over spending," Vancouver Sun, 24 December 1991, X2.
28. Eichler, "Frankenstein Meets KafkaIN 205-6.
29. McTeer et al. vs. the Queen, Schedule 16 (Workplan for Working Group IV). Notes for Chapter 3.5
1 . RCNRT , Proceed wi th Care, Vol -1. 88 .
2. A.L. Cochrane, cited in John B. MacKinlay, "From 'Promising Report' to 'Standard Procedure: Seven Stages in the Career of a Medical Innovation," 376. 3. RCNRT, Proceed with Care: The Final Report of the Royal Commission on New Reproductive Technologies, Main Topics, 34. 4. RCNRT, Proceed with Care, Vol. 1, 72.
5, RCNRT, Proceed with Care, Vol. 1, 72-88. 6 . RCNRT, Proceed wi th Care, Vol -1, 47. 7. Canadian ~dvisoryCouncil on the Status of Women, Brief to the Royal Commission on New Reproductive Technologies, 28 - 9.
8. RCNRT, Proceed with Care, Vol. 1, 94. 9. Don ~arquis,"An Ethical Problem Concerning Recent Therapeutic Research on Breast Cancer," 140-53; Helen Bequaert Holmes, "Can Clinical Research Be Both Ethical and Scientific?" 154-65.
10. RCNRT, Proceed with Care, Vol.1, 93.
11. RCNRT, Proceed with Care, Vol.1, 93-6.
12. Patricia Baird, "New Reproductive Technologies: Implications for Canada's Health Care System," 6.
13. Sue V. Rosser, "Revisioning Clinical Research: Gender and the Ethics of ~xperimentalDesign," 135.
14. Rosser, "~evisioningClinical Research," 135.
15. ~bbyLippman, "Prenatal Diagnosis: Reproductive Choice? Reproductive Control?" 68.
16. Lippman, "Prenatal Diagnosis," 68.
17. "National forum on breast Cancer 'watershed event'" Globe and Mail, 17 November 1993, A3; "Breast-cancervictims given voice," Globe and Mail, 16 November 1993, A4. 18. Lippman, "Prenatal Diagnosis," 68. 19. "La Commission Baird stattire les foudres de nombreux specialistes," La Presse, 2 December 1993, A4; "Proceed with care indeed," Globe and Mail, 2 December 1993, A20; "Personne ne sfentend" Le Devoir, 1 December 1993, Al.
20. Lippman, "Prenatal Diagnosis," 68. 21. RCNRT, Proceed with Care, Vol.1, 111-23. 22. Liora Salter and Debra Slaco, Public Inquiries in Canada, 210. 23. Salter and Slaco, Public Inquiries in Canada, 210.
24. Salter and Slaco, Public Inquiries in Canada, 210. 25. Salter and Slaco, Public Inquiries in Canada, 210.
26. See for example, Robert E. Babe, Canadian Television Broadcasting Structure, Perf~manceand Regulation, Ottawa : Economic Council of Canada, 1979; Herschel Hardin, Closed Circuits: The Sellout of Canadian Television, Vancouver: Douglas & McIntyre, 1985. 27. Adam Ashforth, "Reckoning Schemes of Legitimation: On Commissions of Inquiry as Power/Knowledge FormsIn 8. Notes for Chapter 4.1
1. Charlotte Gray, "Studying reproductive technologies: IWe1ll never please everybodyI1"1258. 2. organisation for Economic Co-operation and Development, Technology on Trial : Public Participation in Decision -Making Related to Science and Technology, 70.
3. RCNRT, Proceed with Care, Vol.1, 23-5. 4. RCNRT, Proceed with Care, Vo1.1, 25. 5. Louise Vandelac, llFrom Bird to Baird," 6. 6. M. McTeer, M. Hebert, L. Vandelac and B. Hatfield vs. the Queen, Schedule 12, (Memo from L. Vandelac to P. Baird, commissioners and RCNRT senior staff, quote from a memo from D. Michols, 7 May 1989) p.21.
7. McTeer et al. vS. the Queen, Schedule 8 (Letter from Hatfield, Hebert, McTeer and Vandelac to Baird, 9 June 1990) p.5.
8. See Le Droit, 20 September 1990, 36-7; The Gazette, 19 September 1990, B4; Toronto Star, 16 October 1990, DI. 9. For a critique of polling techniques and their abuse, see Benjamin Ginsberg, The Captive Public: How Mass Opinion Promotes State Power, New York: Basic Books, 1986; Claire Hoy, Margin of Error: Pol 1 sters and the Manipulation of Canadian Poli tics, Toronto: Key Porter Books, 1989. 10. McTeer et al. vs. the Queen, Schedule 12 (memo from L. Vandelac to commissioners, P. Baird and RCNRT senior staff). 11. Stephen J. Genuis, et al., "Public attitudes in Edmonton towards assisted reproductive technologyIN Canadian Medical Association Journal, 149,2 (15 July 1993) : 160. 12. McTeer et al. vs. the Queen, Schedule 12 (letter from B. Hatf ield, M. Hebert, M. McTeer, L. Vandelac to P. Baird) . 13. McTeer et al. vs. the Queen, Schedule 8 (letter from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac to P. Baird, 9 June 1990), p.6-7. 14. Connie Clement and Diana Majury, "Interview: Visions for Women's ~eproductiveCare," 18-22. 15. For discussion see Janice G. Raymond, "The Marketing of the New Reproductive Technologies: Medicine, the Media and the Idea of Progress," 253-61; Sarah Franklin, uDeconstructing Desperateness: The Social Construction of Infertility in Popular Representations of New Reproductive Technologiesfn200-29. For an example see, "The Way We Live: The brave new world of babymaking has given many more families the chance to experience the miracle of birth," Life, 1 December 1993. 16. McTeer et al. vs. the Queen, Schedule 12 (memo from L. Vandelac to commissioners and RCNRT staff) p.14-6. 17. Toronto Star, "Few favor government funding for test-tube babies, study shows," 16 October 1990, Dl. 18. RCNRT, Proceed with Care, Vol.1, 179.
19. RCNRT, Update, (January 1991) : 2. 20. McTeer et al. vs. the Queen, (Statement of Claim) p.12-3. 2 1. RCNRT, Proceed wi th Care, Vol . 1, 2 6.
22. RCNRT, Update, (August 1992) : 1.
23. RCNRT, Update (November 1992); RCNRT, Proceed with Care, Vol.1, 135. 24. RCNRT, "Agenda: Search Conference on New Reproductive Technologies," 4.
25. Christine Overall, "Report on the Search Conference Held by the Royal omm mission on New Reproductive TechnologiesIn 1.
26. RCNRT, Proceed with Care, Vo1.2, 1198-1201.
27. Overall, "Report on the Search Conference," 1.
28. RCNRT, "Agenda", 4.
29. RCNRT, "Agenda,"4. 30. Overall, "Report on the Search Conference;" and RCNRT, "Agenda," 2 - 3. 31. Personal correspondence between RCNRT and the author.
32. McTeer et al. vs. the Queen, Schedules 6 and 8. 33. Margrit Eichler, "Frankenstein Meets Kafka: The Royal Commission on New ~eproductiveTechnologies, 206. 34. Overall, "Report on the Search Conference," 4.
35. Eichler, "Frankenstein Meets Kafka," 215.
36. Overall, "Report on the Search Conference,lf 3.
37. RCNRT, "Agenda," 4. Notes for Chapter 4.2
1. RCNRT, "Royal Commission takes 'total society' approach to new reproductive technol~gies,~press release, 1990. Also, RCNRT, "Royal Commission Undertakes Extensive Consultations Program to Seek Views and Experiences of all Canadians," press release, 29 May 1990; RCNRT, "Royal Commission Begins Extensive Series of Consultations this Fall to Listen to Views of more than 500 Groups and Individuals," press release, 4 September 1990.
2. Infertility Awareness Association of Canada, "Royal Commission Brief," 18 September 1990. 3. Connie Clement and Diana Majury, "Interview: Visions for Women's Health Care," 19-22. 4. Jasmin Habib and Lorna Weir, "A Feminist Alternative Policy Framework for ~eproductiveTechn~logies,~ 3. 5. London Status of Women Action Group, "Brief to the Royal Commission on New Reproductive Technologies,~1990, 7. As cited in Habib and Weir, "A Feminist Alternative Policy FrameworkIu15.
6. Liora Salter and Debra S~~CO,Public Inquiries in Canada, 71.
7. Salter and Slaco, Public Inquiries in Canada, 85. 8. Salter and Slaco, Public Inquiries in Canada, 71. 9. M. McTeer, M. Hebert, L. Vandelac and B. Hatfield vs. the Queen, Schedule 8, (letter from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac to P. Baird) p.8. 10. Personal interviews with intervenors in the public hearings. 11. Women's Health Clinic, "Brief to the Royal Commission on New Reproductive ~echnologies,"24 October 1990, 1. 12. RCNRT, A Guide to Public Participation in the Work of the Royal Commission on New Reproductive Technologies, September 1990. The Commission published two later versions of the pamphlets in January and June 1991. Revisions were not substantial and comments in this section can apply to each edit ion.
13. McTeer et al. vs. the Queen, Schedule 21 (Letter from M. Hebert to D. ~ichols)p.2. 14. RCNRT, Guide pour la participation du public aux travaux de la Commission royale sur les nouvelles techniques de reproduction, September 1990, 11; McTeer et al. vs. the Queen, Schedule 21, (letter from M. Hebert to D. Michols) p.2, 5. 15. RCNRT, A Guide to Public Participation, September 1990, 10. 16. Canadian Research Institute for the Advancement of Women, Our Bodies, Our Babies? Women Look at New Reproductive Techno1ogies. (At the time of writing, this kit was still being distributed by CRIAW. ) 17. McTeer et al. vs. the Queen, Schedule 21, (letter from M. Hebert to D. Michols) p.4-5. 18. McTeer et al. vs. the Queen, Schedule 21 (letter from M. Hebert to D. Michols) p.2.
19. RCNRT, Guide pour la participation du public, September 1990, 6. 20. RCNRT, A Guide to Public Participation, September 1990, 5. 21. RCNRT, Proceed with Care, Vo1.1, 136. 22. ll~n Ethic of Care, The Citizen, 13 January 1993, A9.
23. RCNRT, Proceed with Care, Vol.1, 136. 24. 111t has been released to the Citizen exclusively as a rebuttal to articles by Maureen McTeer," in .An Ethic of Care," Citizen 13 January 1993, A9. McTeer articles included: "McTeer mistrusts commission: reproductive technology study excluding ethics," Calgary Herald 13 December 1992, A2; I1McTeer tackles the tangled web of the ethics of genetics," Vancouver Sun, 18 December 1992, D12; "McTeer examines politics of high tech reproduction,fl Toronto Star, 10 December 1992, ~1. 25. RCNRT, Update (August 1992) , 11; RCNRT, "Addressing the Issues: New Reproductive Technologies," flyer for September 11, 1991 panel discussion; RCNRT, Proceed with Care, Vol.1, 135 and Vo1.2, 1206, 1211, 1214, 1220. 26. Citizens' Forum on Canada's Future, Report to the People and Government of Canada, 13-29. Notes for Chapter 4.3
1. Rene Parenteau, Public Participation in Environmental Decision -making, ix. 2. RCNRT, "Royal Commission takes 'total society' approach to new reproductive technologiesInpress release, 1990.
3. RCNRT, Update (January 1991) : 1.
4. RCNRT Public Notice, Vancouver Sun, 16 my 1990. 5. M'. McTeer, M. Hebert, L. Vandelac and B. Hatfield vs. the Queen, Schedule 8 (letter to P. Baird from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac) p.6. 6. Letter from the Vancouver Women's Reproductive Technologies Coalition to P. Baird, 18 July 1990.
7. McTeer et al. vs. the Queen, Schedule 22 (letter from L. Vandelac to P. Baird) .
8. Letter from the Vancouver Women's Reproductive Technologies Coalition to P. Baird, 18 July 1990. 9. Letter from P. Baird to the Vancouver Women's Reproductive Technologies Coalition, 25 July 1990.
10. McTeer et al. vs. the Queen, Schedule 20 (memo from D. Michols to commissi~ners)p.2. Also, Correspondence from P. Baird to Vancouver Women's New Reproductive Technologies Coalition, 25 July 1990.
11. Barry Checkoway, "The Politics of Public Hearings," 567.
12. RCNRT, "Public ~otice,"Vancouver Sun, 16 May 1990.
13. McTeer et al. vs. the Queen, Schedule 8 (letter from B. Hatf ield, M. Hebert, M. McTeer and L. Vandelac to P. Baird) p. 8.
14. Correspondence from the V~ncouverWomen's New Reproductive Technologies coalition to P. Baird, 25 July 1990.
15. Russell J. Anthony and Ahstair R. Lucas, A Handbook on the Conduct of Public Inquiries in Canada, 51-3.
16. Jasmin Habib and Lorna Weir, "A Feminist Alternative Policy Framework for ~eproductiveTechnologiesIN 9.
17. personal interviews with intervenors at the public hearings. 18. Catherine Martell, personal interview. Sue Cox, personal interview. 19. Canadian Research Institute for the Advancement of Women, Our Bodies, Our Babies? Women Look at New Reproductive Technologies.
20. Anthony and Luc~~,A Handbook on the Conduct of Public Inquires, 63-6. 21. Louise Vandelac, "From Bird to Baird," 10.
22. Checkoway, "The Politics of Public Hearings,!! 567. 23. McTeer et al. vs. the Queen, Schedule 10 (letter from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac to P. Baird) p.3. 24. McTeer et al. vs. the Queen, (Statement of Claim, Article 51.) 25. McTeer et al. vs. the Queen, Schedule 20 (memo to commissioners from D. Michols, Director, Consultations and Coordinations) p. 2. 26. McTeer et al. vs. the Queen, Schedule 20 (memo to commissioners from D. Michols, Director, Consultations and Coordinations) p .2. 27. RCNRT, "Royal Commission undertakes extensive consultations program to seek views and experiences of a11 Canadians," press release, 29 May 1990-
28. McTeer et al. vs. the Queen, Schedule 10, (letter from B. Hatfield, M. Hebert, M. McTeer and L. Vandelac to P. Baird) p.5. 29. "Une question dlargent divise les commissaires et la presidente de la Commission royale d'enquete," Le Soleil, 26 September 1990, A13. 30. McTeer et al. vs. the Queen, Schedule 22, (Letter from L. Vandelac to P. ~aird). 31. Personal interviews with intervenors in the public hearings. 32. McTeer et al. vs. the Queen, Schedule 20 (Memo from D. Michols to commissioners) p.1. 33. McTeer et al. vs. the Queen, Schedule 20 (Memo from D. Michols to commissioners). 34. Organisation for Economic Co-operation and Development, Techno1ogy on Trial : Public Participation in Decision -making Related to Science and Technology, 71. 35. Liora Salter and Debra Slaco, Public Inquiries in Canada, 71. 36. For a discussion, see Sue Cox, "Strategies for the Present, Strategies for the Future: Feminist Resistance to New Reproductive Technol~gies,~87; Heather Menzies, IfTest-Tube Mothers Speak," 8-11. For media coverage, see for example: Toronto Star 29 October 1990, A2 and 30 October 1990, A3. Globe and Mail 29 October 1990, A5 and 30 October 1990, A4. Also Montreal Gazette 22 November 1990, A6. Toronto Star 20 November 1990, All, Globe and Mail 21 November 1990, A10 and 23 November 1990, A2. 37. Menzies, "Test Tube Mothers Speak," 9.
38. NACIS response: Globe and Mail 24 November 1990, D7. 39. Vancouver Women's Reproductive Technologies Coalition, "Brief presented to the Royal Commission on New Reproductive Technologies.
40. National Action Committee On the Status of Women, "The New Reproductive ~echnologies:A Technological Handmaid's Tale," A Brief presented to the Royal COI~U~~SS~O~on New Reproductive ~~~hnologies;Infertility Awareness Association of Canada, "Royal Commission Brief." 41. See for example, Checkoway, "The Politics of Public Hearings;" Margaret Sinclair, "The Public Hearing as participatory Device: Evaluation of the IJC Experience." 42. Adam Ashforth, "Reckoning Schemes of Legitimation: On Commissions of Inquiry as Power/Knowledge Forms," 12. 43. Sinclair, "The Public Hearing as Participatory Device," 106.
44. Anthony and Lucas, A Handbook on the Conduct of Public Inquiries, 67. 45. Timothy OIRiordan, "Citizen Participation in Practice: Some Dilemmas and Possible Solutions," 164.
46. Checkoway, "The politics of Public Hearing, 575. Notes for Chapter 4.4
1. RCNRT, Update (August 1992) : 8-11.
2. RCNRT , Personal Experiences wi th New Reproducti ve Technologies: Report from Private Sessions, iii - 1. 3. RCNRT, Personal Experiences, iii .
4. See for example, Linda S. Williams, "No Relief Until the End: The Physical and Emotional Costs of In Vitro Fertilization," in C. Overall, ed. The Future Of Human Reproduction; Cristine Crowe, frWhoseMind Over Whose Matter? Women, In Vitro Fertilisation and the Development of Scientific KnowledgeID in M. McNeil, I. Varcoe and S . Yearley, The New Reproductive Technologies; Gena Corea, The Mother Machine. London: The Women's Press, 1989. 5 . RCNRT, Personal Experiences, 8. 6. RCNRT, Personal Experiences, 6, 16,
7. RCNRT, Personal Experiences, 6 ; Heather Menzies , "Test-Tube Mothers Speak," 9. 8. RCNRT, Personal Experiences, 6. 9. Louise Vandelac, personal interview.
10 . RCNRT, Personal Experiences, 13 - 7. 11. RCNRT, Proceed with Care, Vol.1, 136.
12. RCNRT, Update (January 1991) : 2. Notes for Chapter 4.5
1. M. McTeer, M. Hebert, L. Vandelac and B. Hatfield vs. the Queen, Schedule 20 (memo from D. Michols, Director, Consultations and ~ommunicationsto commissioners) p.2. 2. RCNRT, Update (August 1992): 10. 3. RCNRT, Guide to Public Participation in the Work of the Royal Commission on New Reproductive Technologies, September 1990, 11- 2.
4. McTeer et al. vs. the Queen, Schedule 20 (memo from D. ~ichols to commissioners) p.2. 5. McTeer et al. vs. the Queen, Schedule 20 (memo from D. Michols, Director, Consultations and Communications to commissioners p. 2. 6. McTeer et al. vs. the Queen, Schedule 20 (letter from L. Vandelac to D. Michols) P.2.
7. RCNRT, Proceed with Care, Vo1.2, 1205-28.
8. RCNRT, Proceed with Care, Vo1.2, 1205-28. 9. McTeer et al. vs. the Queen, Schedule 20, (letter from L. Vandelac to D. Michols) p.2. 10. NNAC attacks commission over researchIftGlobe and Mail, 4 February 1993, A8.
11. RCNRT, Update (August 1992) : 10. 12. RCNRT document #91-C-060,contract dated 1 October 1991 between the Royal C~~missionon New Reproductive Technologies and Burson-Marsteller, p.2. 13. Margrit Eichler, "Frankenstein Meets Kafka: The Royal Commission on New Reproductive Technologies," 217; Varda ~urstyn, cited in "Panel too close to pharmaceutical firms, groups says," Vancouver Sun, 4 February 1992, A6.
14. Canadian Coalition for a Royal Commission on New Reproductive Technologies, "~riefingPaper On the Research Program of the Royal commission on New Reproductive Technologies," 2. 15. Correspondence from RCNRT to author; RCNRT, "The Impact of New Reproductive ~echnologieson WOmen's Reproductive Health and Well-Being," 2. 16. RCNRT, Proceed with Care, Vol -1, 136. 17. McTeer et al. vs. the Queen, Schedule 20 (Memo from Michols, Director, consultations and Coordinations to commissioners) p.1.
18. RCNRT, Update (August 1992) : 11. 19. RCNRT, Proceed with Care, Vo1.2, 1197-1228. 20. RCNRT, Proceed with Care, Vo1.2, 1201-2.
21. RCNRT, Update (August 1992): 11. 22. RCNRT, "The Impact of New Reproductive Techn~logies,~~37, 42- 44,47. 23. RCNRT, Proceed with Care, Vo1.2, 1197-1228. 24. McTeer et al. vs. the Queen. Schedule 20 (memo from B.M. Knoppers to ~llCommissioners, 3 August 1991).
25. RCNRT, Proceed with Care, Vol. 1, 135. 26. RCNRT, Proceed with Care, Vo1.2, 1219-20. 27. RCNRT, Proceed with Care, Vo1.2, Appendix C. 28. ~atherineMartell, personal interview. Notes for Chapter 5.0
1. Adam Ashforth, "Reckoning Schemes of Legitimation: On Commissions of Inquiry as Power/Knowledge FormsIfl13-4.
2. RCNRT, press release, 29 May 1990.
3. RCNRT, Proceed wi th Care, Vols 1 and 2. 4. RCNRT, Proceed with Care: The Final Report of the Royal Commission on New Reproductive Technologies, Main Topics, 2. 5. RCNRT, What we Heard: Issues and Questions Raised During the Public Hearings, 7; RCNRT, Update (January 1991) : 1.
6. Louise Vandelac, "From Bird To Baird," 10. 7. "~eproductionPanel lashed over spending," Vancouver Sun, 24 December 1991, X2. 8. Itone couple in 14 infertile, Survey finds," Globe and Mail, 13 November 1993, A4.
9. "$28 million cost of report queried," Vancouver Sun, 1 December 1993, A4; RCNRT, "Summary of Recommendations, Executive Summary. It 10. AS cited in L. Christopher Plein, "Popularizing Biotechnology: The Influence of Issue Definition," 474.
11. Richard Simeon, "Inside the MacDonald Commissi~n,~171-3.
12. Simeon, "Inside the MacDonald CommissionIn 173-5. 13. RCNRT, Proceed with Care, Vol.1, 133-4. 14. Linda S. Williams, "Legislation, Inquiries and Guidelines on ~nfertilityTreatment and ~urro~acy/~reconcepti~nContracts: A Review of Policies in Seven countries;" Patricia Spallone, "Reproductive Technology and the State: The Warnock Report and I~S Clones. " 15. Anonymous, "Inside the Royal Commission," 234.
16. Anonymous, "Inside the Royal commission,^ 234.
17. Jasmin Habib and Lorna Weir, "A Feminist Alternative policy Framework for Reproductive Technol~gies,~6 (ms). 18. M. McTeer, M. Hebert, L. Vandelac and B. Hatfield vs. the Queen, Schedule 16. 19. l1Feminist ideologues get in the way of progress," Financial Post, 4 January 1992, S31; Feminists' bias cited in firings," Vancouver Sun, 17 December 1991, Al; "Feminist bias dismissed as cause of split in panel,I1 Vancouver Sun, 18 December 1991, A4; 20. Ruth Hubbard, "Of Genies and Bottles: Technology, Values and Choices," 82. 21. Habib and Weir, "A Feminist Alternative Policy Framework." 22. Habib and Weir, "A Feminist Alternative Policy Framework," 4-5 (ms). 23. Brian Wynne, "Public Understanding and the Management of Science," 145.
24. Habib and Weir, 'A Feminist Alternative Policy ~ramework," 28 (ms). 25. Habib and Weir, "A Feminist Alternative Policy ~ramework," 28 (Ins) . 26. Habib and Weir, 'A Feminist Alternative Policy ~ramework," 4 (ms). 27. Ashforth, "Reckoning Schemes of LegitimationIM7-16.
29. Alan Cairns, ~~eflectionsof Commission Research," 105.
31. Innis Christie and A- Paul Pross, "Introdu~tion,~12. 32. Michael Gismondi and Mary Richardson. "Discourse and Power in ~nvironmental Politics: Public Hearings on a Bleached Kraft Pulp ill in Alberta, Canada," 49-50.
3 3. Maureen McTeer, The Tangled Womb: The Poli tics of Human Reproduction, 2 0. 34. Sheila Jasanoff, "Contested Boundaries in Policy- Relevant Science," 225- Notes for Chapter 6.0
1. Margrit Eichler, "Frankenstein Meets Kafka: The Royal Commission on New Reproductive Technol~gies,~214-17; Anonymous, "Inside the Royal Comrnis~ion,~223-36 . 2. Richard Simeon, "Inside the MacDonald Commis~ion,~169.
3. Alan Cairns, "Reflections on Commission Research," 98.
4. Eichler, "Frankenstein Meets Kafka," 215.
5. Heather ~enzies,"Test-Tube Mothers Speak," 8. 6. See for example, Thomas Hurka, "If feminists are pro-choice, why don't they honour women's choices consistently?~ Globe and Mail, 4 May 1991; "Fighting infertility: please respect my choice," Globe and Mail 5 November 1990; "Fertility clinics defended," Globe and Mail, 30 October 1990.
7. See for example the following briefs: Women's Health Clinic (~innipeg);Vancouver Women's Reproductive Technologies Coalition; National Action C~ItIttIittee on the Status of Women; DAWN Canada. 8. ~ut-hHubbard, "Of Genies and Bottles: Technology, Values and Choices," 84. BIBLIOGRAPHY
Anonymous. "Inside the Royal Commis~ion.~in Misconceptions: The Social Construction of Choice and the New ~eproductiveand Genetic Technologies, G. Basen, M. Eichler and A. Lippman, eds. Hull, Que.: Voyageur, 1993. 223-36. Anthony, Russell J. and Ahstair R. Lucas. A Handbook on the Conduct of Public Inquiries in Canada. Toronto: Butterworths, 1985. ~rstein,Sherry. "A Ladder of Public Participation." Journal of the American Institute of Planners. 35, 4 (July 1969) : 215-24. Ashforth, Adam "~eckoningSchemes of Legitimation: On omm missions of Inquiry as Power/Knowledge Forms,~ ~ournalof Historical Sociology. 3,1 (March 1990) : 1- 22. Baird, ~atricia."New Reproductive Technologies: ~mplications for Canada's Health Care System." Speech delivered to the Genesis Foundation 3rd Annual Awareness Breakfast, Toronto, 3 March 1993. ~arile,Maria. "New Reproductive Technology: My Personal and political Dichotomy. " Canadian Woman Studies/Les Cahiers de la Femme. 13.4:61-2. Basen, Gwynne, Margrit Eichler and Abby Lippman, eds. ~isconceptions:The Social Construction of Choice and the New ~eproductiveand Genetic Technologies. ~~11, QU~. : voyageur, 19 9 3. Bashevkin, Sylvia "Does public opinion matter? The adoption of federal royal omm mission and task force recommendations on the national question, 1951-1987," Canadian public Administration. 31,l (Fall 1988) : 390- 407. Benston, Margaret "Feminism and the Critique of Scientific Method. in Feminism: From Pressure to Poli tics, Angela R. MIles and Geraldine Finn, eds. Montreal: Black Rose Books, 1989. 57-76. Blank, Robert H. Regulating Reproduction. New York: Columbia university Press, 1990. Bonnicksen, Andrea L. In Vi tro Fertilization: Building Policy from Laboratories to Legislatures. New York: Columbia University Press, 1989. Brodribb, Somer. "Off the Pedestal and Onto the Block? Motherhood, Reproductive Technologies and the Canadian State." Canadian Journal of Women and the Law. 1,2 (1986): 407-23. Bryant, Heather. The Infertility Dilemma: Reproductive ~echologiesand Prevention, Background Paper. Ottawa : Canadian Advisory Council on the Status of Women, 1990. Burfoot, Annette. "From COW Shed to Clinic: Veterinary Science and the New Reproductive and Genetic ~echnologies." in Misconceptions: The Social construction of Choice and the New Reproductive and Genetic Technologies, G. Basen, M. Eichler and A. Lippman, eds. Hull, Que: Voyageur, 1993. 113-21. Burfoot, Annette. "The Normalization of a New Reproductive Technology. " in The New Reproductive Technologies, Maureen McNeil, Maureen, Ian Varcoe and Steven Yearley, eds. London: ~acmillan,1990. 58-73. Burstyn, Varda. "Breeding Discontent. " in Misconceptions: The Social ~onstructionof Choice and the New ~eproductiveand Genetic Technologies, G, Basen, M. Eichler and A. Lippman, eds. Hull, Que.: Voyageur, 1993. 171-92. Cairns, Alan C. "Reflections On Commission Research." in Commissions of Inquiry. A. Paul Pross, Innis Christie and John A. Yogis, eds. Toronto: carswell, 1990. 88- 108. Canadian ~dvisoryCouncil on the Status of Women. Brief to the ~oyalCommission on New Reproductive Technologies. Ottawa: CACSW, March 1991. Canadian coalition for a Royal Commission on New Reproductive Technologies. "Briefing Paper on the Research Program of the Royal Commission on New ~eproductiveTechnologies." 3 February 1992, Mimeo. Canadian Coalition for a Royal Commission on New Reproductive ~echnologies,Correspondence to Coalition supporters, June 27 1987 to November 1988. Mimeo. Canadian Research Institut5 for the Advancement of Women, Our Bodies, Our Babies? Women Look at New Reproductive ~echnologies.Ottawa: CRIAW, 1989. Checkoway, Barry. "The Politics of Public Hearings.ll Journal of Applied Behavioural Science. 17 (1981): 566-82. Childs, John. "Canadian Royal Commissions of Inquiry, 1946 to 1962: An Investigation of an Executive Instrument of Government," PhD disseratation. Ann Arbor Michigan: Duke University, 1964. Christie, Innis and A. Paul Pross. "Introduction. in Commissions of Inquiry, A. Paul Pross, Innis Christie and John A. Yogis, eds. Toronto: Carswell, 1990. 1-18. Citizens' Forum on Canada's Future. Report to the People and Government of Canada. Ottawa: Minister of Supply and Services, 1991. Clement, Connie and Diana Majury. "Interview: Visions for Women s Reproductive Care. I' Heal thsharing 9 :2 (Spring 1988): 18-22. Corea, Gena. The Mother Machine: Reproductive Technologies from Artificial Insemination to Artificia1 Wombs. London: The Women's Press, 1985. cox, Sue. llstrategies for the Present, Strategies for the Future: Feminist Resistance to New Reproductive Technologies. If Canadian Woman Studies. 13,2: 86 - 9 .
Daneke, Gregory A. "Introduction," in Public involvement and Social Impact Assessment. Gregory A. Daneke, Margot W. Garcia and Jerome Delli Priscoli, eds. Boulder, CO: Westview Press, 1983.
Doern, G. Bruce and Richard Phidd. Canadian Public Policy: Ideas, Structures and Processes. Toronto: Methuen, 1983. ~olby,R.G.A. "On the Autonomy of Pure Science: The construction and Maintenance of Barriers Between Scientific Establishments and Popular C~lture.~~in Scientific ~stablishmentsand Hierarchies, Norbert Elias et all eds. Boston: D. Reidel Publishing CO., 1982. Dutton, Diana B. "~edicalRisks, Disclosure and Liability: Moving toward Infomed Consent. " Science, Technology and Human Values. 12,3/4:48-59. Eichler, Margrit. "Frankenstein Meets Kafka: The Royal Commission on New Reproductive Technologies." in Misconceptions: The Social Construction of Choice and the New Reproductive and Genetic Technologies, G. Basen, M. Eichler and A. Lippman, eds. Hull, Que.: Voyageur, 1993. 196-222. Eichler, Margrit. "Some Minimal Principles Concerning the New ~eproductiveTechnologies." in The Future of Human ~eproduction,Christine Overall, ed. Toronto: The Women's Press, 1989. 226-35. Fischer, Frank. Technocracy and the Politics of Expertise. Newbury Park: Sage, 1990. ~rankenfeld,Philip J. "Technological Citizenship: A Normative Framework for Risk Studies." Science, Technology & Human Values. 17,4 (Autumn 1992) : 459-84. ~r~nklin,Sarah. fl~econstructingDesperateness: The Social construction of Infertility in Popular Representations of New Reproductive Technologies.~in The New ~eproductiveTechnologies, Maureen McNeil , Ian Varcoe and Steven Yearley, eds. London: MacMillan, 1990. 200- 29. Genuis, Stephen J, Wei-Ching Chang and Shelagh K. Genuis. "public attitudes in Edmonton toward assisted reproductive technology." Canadian Medical Association journal 149,2 (15 July 1993): 153-61. Gismondi, Michael and Mary Richardson. "Discourse and Power in ~nvironmentalPolitics: Public Hearings on a Bleached Kraft Pulp Mill in Alberta, Canada." capita1ism/Nature/Socialism 2,3 (October): 43 - 66. Godschalk, David R. and Bruce Stiftel, "Making Waves: Public participation in State Water Planning." The Journal of Applied Behavioural Science. l7,4 (1981): 597-614. Goundry, Sandra A. "The New Reproductive Technologies, Public Policy and the Equality Rights of Women and Men with ~isabilitie.9,I' in Misconceptions: The Social construction of Choice and the New Reproductive and Genetic ~echnologies,G. Basen, M. Eichler and A. Lippman, eds. Hull, Que: Voyageur, 1993. 154-66. Gray, Charlotte. "Controversial 'reprotech' royal commission faces growing criticism. " (XAJ. l45,lO (15 November 1991) : 1371-2- Gray, Charlotte. "Studying reproductive technologies: 'Well1 never please e~erybody.'~~CMAJ. 141 (15 December 1989): 1258-9. Habib, Jasmin and Lorna Weir. "A Feminist Alternative Policy ~rameworkfor Reproductive Technologies." Draft, September 1993. Holmes, Helen Bequaert and Laura M. Purdy, eds. Feminist perspectives in Medical Ethics. Bloomington: Indiana university Press, 1992. Holmes, Helen Bequaert "Can Clinical Research Be Both Ethical and Scientific?'' in Feminist Perspectives in Medical Ethics, H. Bequaert Holmes and L.M. Purdy, eds. ~loomington: Indiana University Press, 1992. 154-65. Hubbard, Ruth. "Of Genies and Bottles: Technology, Values and Choices." Canadian Woman Studies 13, 2 (Winter 1993): 82-4. Hubbard, Ruth and Elijah Wald. "The Eugenics of Normalcy: The politics of Gene Research.'' The Ecologist 23,5 (~eptember/October1993): 185-91. Infertility Awareness Association of Canada. "Royal Commission Brief." Ottawa, Ont. 19 September 1990. Jasanoff, Sheila. "Public participation in science policy." Chemistry in ~ritain.25,4 (April 1989) : 368-70. asa an off, Sheila. "Contested Boundaries in Policy-Relevant Science. " Social Studies of Science 17 (1987): 195-230. Kasperson, Roger E. "Six Propositions on Public participation and Their Relevance for Risk Communication." Risk Analysis 6,3 (1996): 275-81. Knoppers, Bartha Maria. "Women and the Reproductive ~echnologies. " in Family Law in Canada: New Directions, Elizabeth Sloss, ed. Ottawa: Canadian Advisory Council on the Status of Women, 1985. 211-25. Knoppers, Bartha Maria and Elizabeth Sloss, "Legislative Reforms in ~eproductiveTechnology. I' Ottawa Law Review. 18 (1986): 663-719. Krimsky, Sheldon and Alonzo Plough. Environmental Hazards: communicating Risks as a Social Process. Dover, Massachusetts: Auburn House, 1988. Kuhn, Thomas. The Structure of Scientific Revolutions. Chicago: University of Chicago Press, 1970. Lambert, Carmen and Marcel Lauziere. "Commission Baird: ~usqu'ouscience et secret peuvent-ils fair bon menage?" Interface. 14, 1 (January/~ebruary1993): 5-7.
~eiss,William. Under Technology's Thumb. Montreal & Kingston: McGill-Queen's University Press, 1990. ~ewontin,R.C. "The Dream of the Human Genome." The New York Review of Books (28 May 1992): 31-40.
~ewontin,R. C. Biology as Ideology. Concord, Ont . : Anansi, 1991. Lippman, Abby. "Prenatal Diagnosis: Reproductive Choice? ~eproductiveControl?" in The Future of Hwnan Reproduction, Christine Overall, ed. Toronto: The Women's Press, 1989. 182-94. Lippman, Abby. "Prenatal Diagnosis: A Chance for Action- Research?" Resources for Feminist Research 15, 3 (November 1986): 67-8. MacKay, Wayne A. "Mandates, Legal Foundations, Power and Conduct of Commissions of Inquiry." in Commissions of ~nquiry,A. Paul Press, Innis Christie and John A. yogis, eds. Toronto: Carswell, 1990: 29-47. Marquis, Don. "An Ethical Problem Concerning Recent Therapeutic Research On Breast Cancer.ll in Feminist perspectives in Medical Ethics, H. Bequaert Holmes and L.M. Purdy, eds. Bloomington: Indiana University Press, 1992. 140-53.
McComack, Thelma. "Public Policies and Reproductive Technology: A Feminist Critique." Canadian Public policy. 14, 4:361-75-
McTeer, Maureen. The Tangled Womb: The Politics of Human Reproduction. Toronto: HarperCollins, 1992. McTeer, Maureen, Martin Hebert, Louise Vandelac and Bruce Hatfield vs. the Queen, the Attorney of Canada and patricia Baird. Federal Court Statement of Claim (T303591), 6 December 1991. Menzies, Heather. "Test-TubeMothers Speak." Canadian Forum. (July/August 1993). Miller, Jon D. The American People and Science Policy: The Role of Public Attitudes in the Policy Process. New York: Pergamom Press, 1983. Mintz, Morton. At any Cost: Corporate Greed, Women and the Dalkon Shield. New York: Pantheon Books, 1985. ~ulkay, Michael. Science and the Sociology of Know1 edge. London: Allen & Unwin, 1979. National Action CoRUnittee on the Status of Women. "The New ~eproductiveTechnologies: A Technological Handmaid's Tale: A Brief Presented to the Royal Commission on New ~eproductiveTechnologies." Toronto, Ont. 29 October 1990. pJelkin, Dorothy. "Controversies and the Authority of Science," in Scientific Controversies: Case studies in the resolution and closure Of disputes in science and technology. H-Tristam Engelhardt Jr and Arthur L. Caplan, eds. Cambridge: Cambridge University Press, 1987. 283-93. Noble, David. "Present Tense Technology: Part Threen. Democracy (Fall 1983b) : 71-93. organisation for Economic Co-operation and Development. ~~cmologyon Trial : Public Participation in Decision - making related to Science and Technology. Paris : OECD, 1979.
Overall, Christine, ed. The Future of Human Reproduction. Toronto: The Women's Press, 1989. Overall, christine. "Report on the Search Conference Held by the Royal Commission on New Reproductive Technologie~.~ july 1990. Mimeo. Ozawa, Connie. Recasting Science : Consensual Procedures i.n Public Policy Making. Boulder: Westview Press, 1991. Parenteau, Rene . Public Participation in Environmental Decision-making. Ottawa: Federal Environmental Assessment Review Office, 1988.
Perrow, Charles. Normal Accidents: Living with High -Risk Technologies. New York: Basic Books, 1984. Plein, L. Christopher. "Popularizing Biotechnology: The Influence of Issue Definition." Science, Technology and Human Values 16,4 (Autumn 1991): 474-90. Plough, Alonzo and Sheldon Krimsky. wThe Emergence of Risk Communication Studies: Social and Political Context." Science, Technology and Human Values 12,1/2: 4 - 10. Pollack, Michael. "Public Participation." in ~egulating Industrial Risk, H. Otway and M. Peltu, eds. London, Butterworths, 1985. 77-93. Pross, A. Paul, Innis Christie and John A. Yogis, eds. Commissions of Inquiry. Toronto: Carswell, 199 0.
Raymond, Janice G. Women as Wombs : Reproductive Technologies and the Battle over Women Is Freedom. San Francisco: HarperSanFranciso, 1993. Raymond, Janice G. "The Marketing of the New Reproductive Technologies: Medicine, the Media and the Idea of Progress. l' Issues in Reproductive and Genetic Engineering 3,3 (1990): 253-61.
Rehner, Jan. Infertili ty: Old ~yths/NewMeanings. Toronto : Second Story Press, 1989, Rodger, John J. "Natural justice and the big public inquiry: a sociological perspective. Sociological Review 33,3 (August 1985): 409-29. Rosser, Sue V. "~evisioningClinical Research: Gender and the Ethics of Experimental Design." in Feminist Perspectives in Medical Ethics, H. Bequaert Holmes and L.M. Purdy, eds. Bloomington: Indiana university Press, 1993. 127-39. Royal Commission on New Reproductive Technologies. Proceed with Care: Final Report of the Royal Commission on New Reproductive Technologies Volumes 1 and 2. Ottawa: Minister of Government Services Canada, 1993. Royal Commission on New Reproductive Technologies. Proceed with Care: Final Report of the Royal Commission on New Reproductive Technologies, Main Topics. Ottawa, November 1993. Royal Commission on New Reproductive Technologies. Update January 1991, January, August and November 1992, December 1993. Royal Commission on New Reproductive Technologies. Personal Experiences wi th New Reproductive Technologies : Report from Private Sessions. May 1992. Royal Commission on New Reproductive Technologies. What We Heard: Issues and Questions Raised During the Public Hearings. September 1991.
Royal Commission on New Reproductive Technologies. A Guide to Public Participation in the Work of the Royal Commission on New Reproductive Techno1ogies. September 1990, January 1991, June 1991. Royal Commission on New Reproductive Technologies. "Biographical Notes on commissioner^.^ August 1990, December 1991. Mimeo. Royal Commission on New Reproductive Technologies. "Agenda: Search Conference on New Reproductive Technologies." 18-20 June 1990. Mimeo. Royal Commission on New Reproductive Technologies, "Royal Commission takes 'total society' approach to new reproductive technologie~,~press release, 1990. Royal Commission on New Reproductive Technologies. "Royal Commission undertakes extensive consultations program to seek views and experiences of all Canadians," press release, 29 May 1990. Royal Commission on New Reproductive ~echnologies. "Royal Commission Begins Extensive Series of Consultations this Fall to Listen to Views of More Than 500 Groups and individual^.^ press release, 4 September 1990. Royal Commission on New Reproductive Technologies. "The Impact of New Reproductive Technologies on Women's Reproductive Health and Well-Being." 1 August 1990. Unpublished conference transcript. Salomon, Jean-Jacques. "Une Evaluation de llEvaluation Sociale des Technologies." in Les Pratiques de 1 Evalua tion Sociale des Technologies: Bilan e t Perspectives, Camille Limoges, ed. Sainte-Foy, Que: Conseil de la science et de la technologic, 1991. 17- 32. Salter, Liora. "The Two Contradictions in Public Inquiries." in Commissions .ofInquiry, A. Paul Pross, Innis Christie, and John A. Yogis, eds. Toronto: Carswell, 1990. 173-95. Salter, Liora and Debra Slaco. Public Inquiries in Canada. Ottawa: Science Council of Canada, 1981. Schatzow, Steven. "The Influence of the Public on Federal Environmental Decision-making in Canada.N in Public Participation in Planning, W.R. Derrick Sewell and J.T. Coppock, eds. London: John Wiley & Sons, 1977. 141-58. Science Council of Canada, Regulating the Regulators: Science, Values and Decisions. Ottawa: Science Council of Canada, 1982. Scutt, Jocelynne A. nThe Politics of Infertility Counselling. Issues in Reproductive and Genetic Engineering. 4,3 (1991): 251-56. Sewell, W.R. Derrick, and J.T. Coppock. Public Participation in Planning. London: John Wiley & Sons, 1977. Short James F. Jr. "The Social Fabric at Risk: Toward the Social Transformation of Risk Analysis. l1 Sociological Review. 49: 711-25. Simeon, Richard. urnside the MacDonald Commission." Studies in political Economy 22 (Spring 1987) : 167-79. Sinclair, Margaret. "The Public Hearings as Participatory Device: Evaluation of the IJC Experience." in Public Participation in Planning, W. R. Derrick Sewell and J.T. Coppock, eds. London: John Wiley & Sons, 1977. 105-22. Slovic, Paul. "Perception of Risk. " Science 236 (17 April 1987) : 280-5. Spallone, Patricia. "Reproductive Technology and the State: The Warnock Report and its Clones.ll in Made to Order: The Myth of Reproductive and Genetic Progress, P. Spallone and D.L. Steinberg, eds. Oxford: Pergamon Press, 1987. 166-83. Spallone, Patricia and Deborah Lynn Steinberg, eds. Made To Order: The Myth of Reproductive and Genetic Progress. Oxford: Pergamon Press, 1987. Steinberg, Deborah Lynn. "The Depersonalization of Women through the Administration of In Vitro Fertilisation. in Made To Order: The Myth of Reproductive and Genetic Progress, P. Spallone and D.L. Steinberg, eds. Oxford: Pergamon Press, 1987. 74-122. Stephens, Thomas and Associates. Highlights from Survey of Canadian Fertility Programs. Ottawa: Royal Commission on New Reproductive Technologies, April 1993. Vancouver Women's Reproductive Technologies Coalition. "Brief presented to the Royal Commission on New Reproductive Technologies." Vancouver, B.C. November 1990. Vandelac, Louise. "From Bird to Baird: Les commissions royales se suivent mais ne se ressemblent pas." Paper presented at the Tenth Biennial Conference of The National Association of Women and the Law, Vancouver, 19-21 February 1993. Walsh, Heidi "Tight Lips Sink Ships.I1 Kinesis February 1992, 12-3. Williams, Linda S. "Legislation, Inquiries and Guidelines on Infertility Treatment and Surrogacy/Preconception Contracts: A Review of Policies in Seven Countries." in Research Volumes of the Royal Commission on New Reproductive Technologies, Vol 9. Ottawa: Minister of Government Services Canada, 1993.
Wilson, Harry A. Commissions of Inquiry: A Handbook of Operations. Ottawa: Privy Council Off ice, 1983. Women's Health Clinic. ''Brief to the Royal Commission on New Reproductive Techn~logies.~Winnipeg, Man. 24 October 1990. Wynne, Brian. I1Knowledges in Context." Science, Technology and Human Values. 16,1:111-21. Wynne, Brian. "Public Understanding and the Management of Science. " in The Management of Science, British Association for the Advancement of Science, ed. London: MacMillan, 1991. 143-69. APPENDIX A Notice of Public Hearings As Published in the Vancouver Sun, 16 May 1990
CANADA Royal Commission on New ReproductiveTechnologiesl li Commission Royale sur les nouvelles techniques ;i 1 de reproduction PUBLIC NOTICE. . . The Royal Commission on New Reproductive Technolog~es *'. has been established by the Government ol Canada with a man- . date b'inquire into and report on CUrrent and potentialmedical and .:: xientrfic developments relatedto new reproductive technoloq~es. . considering in particular their social, ethical, health, research, legal :,: and economc implications and the public Interest, recommending ,;I what policies and safeguards should be applied: -4: . . . Througnout the next year, the Commlsslon will be conducting ' I an extencve public consultAtion program to hear the vtews and *-: I experiences of Canadians from all walk; of Ide. 0 Public hearings will be held across Canada beginningin September 1990. To be invited lo appear, a group or lndiv~dual must submtt ashorl brtef or position paper by July 31.1990. 0 Consultative meetings on spec~ficIssues are bemg organtzed lo provide those wtlh a specilic interest in one or more areas involving Ihe new reproductive technologies to share their wews on the development, impact and implications ol new reproduc- live technolog~es. 0 lndlvidual sessions can be arranged with those wishing to relate a personal experience, relevanl to our mandale, In a private setting. The CommissronIS particularly interested In hearing a full range of views on the following issues: lhe impl~catlons01 new -3 reproductive technologies for womenk reproductive health and well-being; the causes, treatment and prevention of male and ;.?: ,."' female infertllily; all new reprodudrve technolog~es,Including "", reversals 01 sterilization procedures, artificial insemmation, in wrro . fertilization, embryo transfers, prenatal screening and diagnoste 1 techniques, genetic manipulatton and therapeutic intervenlions to : correct genetlc anomalies, sex selection techniques. embryo experimentation and fetal trssue transplants; social and legal arrangements, such as surrogale childbearing, judicial inlerven- tions during gestation and birlh, and ownership of ova, sperm, embryos and fetal tissue: the status and rights ol people using or contributing to reproductive services such as access to procedures. nghts to parenthood and informed consent; and the economic rami- - fications of these technologies, such as the commercial markettng , of ova, sperm and embryos and the application of patent law and lhe lunding of researchand procedures induding inlertllily treatment. , You are encouraged to dlscuss these Issues from a soc~al. I elheal, health, research, legal and economc perspectwe. I Your views and experiences are important! I To find out more aboul the Royal Commlsslon and how you can parllopate, call our toll-lree ~nformat~onhe: 1-800-668-7060, . or wnte: ' I ROYAL COMMISSION ON NEW REPRODUCTIVETECHNOLOGIES PO. Box 1566, Slat~on'8' Otlawa, ON KIP 5R5 APPENDIX B List of Interviews (Alphabetical Order) NB: Names have been withheld wherever requested. Anonymous researcher for the Royal Commission on New Reproductive Technologies by correspondence, June-July 1993 Anonymous researcher for the Royal Commission on New Reproductive Technologies 3 June 1993 Joan Bercovitch Status of Women Canada 27 May 1993 Dawn Black, MP Intervenor in public hearings on behalf of NDP and constituency of New Westminster-Burnaby 15 April 1993 Johanna Braden researcher, Royal Commission on New Reproductive Technologies by telephone, 14 November 1993 Annette Burfoot Intervenor in public hearings 25 May 1993 Denise Cole Deputy Director, Consultations, Royal ~ornrnission on New Reproductive Technologies Sue Cox Member, Coalition for a Royal Commission on New ~eproductive Technologies Intervenor in public hearings on behalf of the Vancouver Women's Coalition on New Reproductive Technologies 22 September 1993 Tina Head Canadian Advisory Council on the Status of Women by telephone, 10 June 1993 Suzi Kram Intervenor in public hearings on behalf of South Surrey/White Rock Women's Place 29 April 1993 Catherine Martell Intervenor in public hearings on behalf of the Vancouver Women's New Reproductive Technologies Coalition Observer, Royal Commission on New Reproductive Technologies Theme Conference on Women's Health and Well-Being. 9 November 199 3 Christine Overall participant in Royal commission on New Reproductive Technologies Search Conference and Colloquia. 25 May 1993 Sunera Thobani Intervenor in the public hearings on behalf of the Immigrant and visible Minority Women of British Columbia 20 April 1993 Louise Vandelac commissioner, Royal Commission on New Reproductive ~echnologies,October 1989-December 1991. 19 February 1993