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The Public Participation Program of the Royal Commission on New Reproductive Technologies: an Evaluation

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The Public Participation Program of the Royal Commission on New Reproductive Technologies: an Evaluation 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
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