The Councils have taken the initiative in developing a policy on ethics that, if implemented, would have an impact on and effectively govern all research conducted by Canadians that involves human beings. It would require research ethics boards (REBs) to screen all such research for both quality and adherence to ethical principles as specified by the TCWG on behalf of the Councils.
Although any individual or group can generate a code of principles that espouses their beliefs about the principles that should govern their own behaviour, having one group create a set of principles that will govern another group is another matter. As a university researcher who has the possibility of being so affected, I welcome the opportunity to comment on the March 1996 draft Code prepared by the Tri-Council Working Group (TCWG). After having read the document, and having attended a discussion and information session at the University of British Columbia (on 5 June 1996) hosted by members of the Working Group, there are several considerations regarding the March 1996 draft Code on which I would like to comment.
The Councils, through the Working Group, have engaged in a policy-making exercise. In doing so, they enter an arena that has been the subject of thoughtful consideration by the universities and disciplines for decades. In my own disciplines of Psychology and Sociology, for example, I recall ongoing discussions about ethical issues in the late 1960s and throughout the 1970s, and recall when universities began creating REBs on a voluntary basis during that same decade. Since then, disciplinary Codes have been refined on the basis of experience, and research ethics continues to be a topic in every social science research methods course from the most introductory to the most advanced.
It is important to acknowledge that history of involvement for two main reasons. First, the decades of discussion and education regarding ethical issues, and the construction and implementation of ethical codes show that concerns about ethics are clearly not new to the universities or the disciplines within them, and their voluntary pursuit of such codes is itself testimony to their individual and collective commitment to ethical considerations in research. Indeed, the earliest formal efforts in this domain by the universities and disciplines pre-date any efforts by the research councils by at least a decade. Second, the history of responsibility and commitment evinced by the universities and disciplines show that they are not some band of renegades who require an external authority to come reign them in for their own good. For the Councils to usurp decision-making authority over the universities and disciplines is thus clearly an interventive action that is unwarranted by any appeal to university or disciplinary neglect.
It is also not unimportant that the particular policy to be implemented is a code of ethics for research involving humans. Codes of ethical conduct express the highest standards of conduct to which individuals in a profession should aspire, and, in this instance, assert those standards that the Councils believe should characterize relations between researchers and those who participate in their research. Given that the universities and the disciplines within them have not been derelict in their concern regarding ethics, then what are some of the considerations that should be addressed by those who would intervene by formulating policy in this realm?
I would suggest the minimal standard one should expect from any code of ethical conduct is that it be formulated in an ethical manner. Any code of ethical conduct whose method of creation does not meet its own high standards of desirable relationships among humans can hardly expect to be treated seriously by those on whom it is imposed, or be implemented other than through coercion. To do otherwise would be tantamount to the Councils saying they are somehow above the very principles they espouse. If the ethical principles contained in the TCWG's draft Code are valid and generalizable, then substituting "policy maker" for "researcher", and so on, mutatis mutandis, in the draft document, provides a way to address whether the Councils and TCWG have exemplified the ethical standards they espouse. Several portions of the draft Code are relevant to this consideration.
In its discussion of informed consent, the TCWG asserts that
Competent subjects, those capable of self-determination, have the fundamental right to decide whether or not to participate in particular research projects. To meaningfully exercise that right, potential research subjects have to give their free and informed consent. Such consent is the lynch-pin of ethical research on human subjects in almost all cases, for it is only with such consent that procedures that would otherwise be invasive or unwarranted can become justified.
The relationship seems a model one, and one should expect no less in the relationship involving the Councils, the universities, the professional associations, and individual members of the research community. In the words of the draft Code, to do less would seem coercive, invasive, unwarranted, and hence unethical.
The notion of informed consent comprises two major elements: whether and to what extent the prospective research participant or policy subject is informed, and whether he/she/they freely consent(s) to participation under those terms. It seems clear that the TCWG has done its best with respect to the first element of that phrase: copies of the draft Code have been made available, information and discussion sessions have been held, and the language of the draft Code makes its expectations of researchers and research ethics boards (REBs) fairly clear.
On the second element of the phrase, however, the TCWG would seem to fall short. Though there is mention made that the members of the Working Group will engage in revision of the document during the fall of 1996, the TCWG gives itself no obligations regarding the extent to which commentaries by members of the academic community will be considered, nor is there any indication that the research community will ever have an opportunity to express its consent to be governed by the principles espoused in the TCWG's final draft. Quite the contrary, the only persons to be consulted regarding the final document are "the Councils", who will offer their "ultimate approval", apparently on behalf of those they command. Such a choice hardly seems to embody the spirit of power-equality and emphasis on "human dignity and respect" that the TCWG's draft Code espouses as an ideal. One can only wonder why those on the Councils are not subject to the same high standards that are expected of researchers.
The only instance where dispensing with final consent might be justifiable is where the persons who are authors of the final document, and those who give final approval, are representative of the full diversity of communities who will be affected by the final policy. This does not appear to be the case with either the TCWG or the Councils, as I will consider in a later section (see pp.10-12).
Although informed consent is considered the "lynch-pin of ethical research" in all situations, and hence may also be considered the "lynch-pin of ethical policy-making", the draft document also notes particular situations in which issues of informed consent become somewhat more complex. One of these involves situations in which the prospective participants are "under discipline". The TCWG explains that
Research with populations who are under discipline is an area of great sensitivity. ... [Such populations] share the characteristic of being within an institutional context where the potential for coercion exists, in the sense that their continued well-being depends on the continued good will of those with authority over them. The major issue in their participation as research subjects is ensuring that consent is freely given and not the result of coercion. The offer of benefits in such contexts ... might amount to undue inducements. Such inducements could limit the freedom of such populations who may perceive such offers as a way to gain favour or improve their situation within their institutional setting.
Stated differently, the section asserts that those who hold power behave ethically when they do not exploit that power to secure the involvement of the person(s) under discipline, and are sensitive to the idea that actions in their own self-interest may not be in the best interest of those who are affected by their actions. Adapted to the policy process, the section might read:
Formulating policy that will affect populations who are under discipline is an area of great sensitivity. ... [Such populations] share the characteristic of being within an institutional context where the potential for coercion exists, in the sense that their continued well-being depends on the continued good will of those with authority over them. The major issue in making their activity the subject of policy is ensuring that their consent is freely given and not the result of coercion. The offer of benefits in such contexts ... might amount to undue inducements. Such inducements could limit the freedom of such populations who may perceive such offers as a way to gain favour or improve their situation within their institutional setting.
Certainly the case could be made that the Canadian scientific community is "under discipline." Although there are many and diverse funding sources for research in Canada and beyond, there are few whose business involves recognition of the value of basic research, and traditionally have extolled the virtues of freedom of inquiry. This means the Councils play a significant role in the life of the research community, and places the Councils in a position of significant influence, such that "the potential for coercion exists, in the sense that their continued well-being depends on the continued good will of those with authority over them." In such situations, Article 12.23 of the draft Code asserts that
Individuals under discipline must be accorded their right to give free and informed consent to participate in research. Researchers must not make or rely on threats or 'coercive offers' to potential research subjects to participate in their research. REBs must be satisfied that no such coercion has occurred.
Once again, to do otherwise would seem unethical, and one should expect no less in the formulation of a code of ethics than in its implementation. Adapted to the policy-making process, we can read that
Individuals under discipline must be accorded their right to give free and informed consent to be the subject of policies in relation to them. Policy makers must not make or rely on threats or 'coercive offers' to the potential recipients of those policies. Those who evaluate the policy recipients' activities in relation to the newly formulated policy must be satisfied that no such coercion has occurred.
This does not appear to be the case in the present context, where the Councils nominate themselves as appropriate authors of a new ethical code, and yet do not perceive the major research institutions (e.g., the universities), major research practitioners (university faculty), and professional associations as equal partners in the process. Offering opportunities for "input" are not the same as involving these others in ongoing engagement on the issue, or in the building of final-draft consensus. It seems ironic that the Councils require REBs to obtain informed consent, and encourage collegial relationships and even "partnerships" between researcher and researched, but never require themselves to formally obtain consent for their directives; they reserve final decision-making authority for themselves, in matters that concern not only them. Imposing a procedural and policy burden without informed consent would seem highly coercive, and beneath the principles that should govern, of all things, the formulation of a code of ethics.
It can also be affirmed that "science" is a "collectivity" in the terms of the draft ethics document, and hence deserves the unique considerations that are due such social entities. According to the TCWG,
Collectivities can be differentiated from other kinds of groups. When a group is not a collectivity, it is likely to be a construct of the research to be undertaken. For the purpose of this Code, a group defined in solely "demographic or statistical terms, with neither leaders nor representatives" is not a collectivity: it is simply a way to delimit a group of otherwise unconnected people for the purpose of the research project. Examples might include people whose only common identity is that they have the same disease or who belong to a certain age group.
This definition misses a key ingredient - that a collectivity is one that recognizes itself as one, or comes to recognize itself as such as a result of social processes that may or may not have been initially constructed in research. Statistical aggregation or de-aggregation may well be the beginning of an identity transformation that results in the aggregation taking on a "personality" in the eyes of the general public, and having experiences that are constructed on the basis of that perceived collective personality. To follow one of the TCWG's examples, it may well be true that "persons with Alzheimer's disease" are "otherwise unconnected people...whose only common identity is that they have the same disease". In contrast, while "persons with AIDS or HIV" at one time might have fallen into the same "unconnected" category, the circumstances and severity of the disease, social reaction to persons who have it, and the efforts of those who have contracted the disease to show leadership in heightening social awareness and sensitivities regarding AIDS sufferers, all combine to suggest that those with AIDS or HIV now comprise a socially recognized grouping of persons that might well be considered a "collectivity".
Whether science is a collectivity as defined by the TCWG is more a test of the adequacy of the Working Group's definition than of the truth of the assertion. Research methods texts, including my own (Palys, 1992, 1997), invariably begin by asserting a belief in academe as comprising "communities of scholars", who are organized in certain pockets and niches, thrive on diversity and the free exchange of information, but are otherwise resistant to, and become less efficient and more myopic under, centralized control. The actions of the Councils - to create a draft Code of Ethics for the Canadian collectivity of researchers who engage in research with humans - only further reaffirms the authenticity of considering the research community a collectivity in the meaning of the draft Code, since the policy assumes the existence of a research community to whom the policy is directed. If there were any equivocation on that recognition, Article 13.2 of the draft Code asserts that
Except where it is self-evidently not the case, the researcher, regardless of the nature of the research to be undertaken, must consider the group to be researched a 'collectivity' as defined above. Therefore, if such a researcher does not wish to follow the Code of Conduct respecting 'collectivities', it is incumbent upon her or him to explain how the group to be researched is not a collectivity as it has been defined above.
Since the claim that "science" is a collectivity is not an unreasonable one, and the TCWG says nothing in the draft Code to suggest that it is not, there are numerous ethical considerations which, according to the TCWG, require attention. Most generally,
In situations where there is cross-cultural difference, or a significant difference in power relations between the researcher and the community to be researched, the researcher has a special responsibility to ensure that the collectivity is willing to participate in the research.
Power differences between the Councils and researchers are evident at least in the realm of funding, where the Councils are a significant source not so much in the amounts but in the types of research they have supported, which have been uniquely consistent with the university's overall mission, and hence on which the universities have been highly dependent. The quote is no less true in the policy domain being considered here, and one would hope that the Councils would be sensitive to differences in culture when formulating policies that will affect those they can coerce.
The TCWG goes on to articulate numerous Articles that reflect what an ethical research relationship guided by the principle of cultural sensitivity would look like, and these are easily adapted to the policy-making context. Rather than proceeding through these Articles one-by-one, I will examine them in sets corresponding to the following three themes: (1) the obligation to acknowledge one may not understand the culture of the collectivity for whom policy is being formulated; (2) the necessity of ensuring full and equal participation by members who represent the diversity of views held in the collectivity, as well as by representatives of the collectivity as a whole; and (3) the responsibility to avoid deleterious effects to the collectivity. In each case, I shall simply assert the policy adaptation of the relevant principle (see my Appendix A for original and policy-adapted wordings of each principle).
Article 13.4 asserts that one should treat any collectivity with respect and dignity, while the remaining Articles of section 13 help to operationalize what showing respect and dignity might entail in the research and policy-making processes. The first step in this regard, may be found in Article 13.3, which encourages us to put professional bravado on hold and approach any research or policy-making task with humility. The warning is against assuming we always "know best" or even thoroughly "understand" those with whom we have dealings. The Article calls on policy-makers to recognize that, although we are all "Canadians", in our midst are many collectivities whose "cultural values and institutions" can differ in significant ways from those of the policy-maker. Ethical policy-making that affects those groups requires that policy-makers be sensitive to the existence of such differences, and take steps to ensure that power differentials that favour the policy-maker are not used in a manner that is destructive of the cultural groups or collectivities who are affected by the policy formulations.
Articles 9, 14 and 17 of section 13 elaborate on those ethical obligations. They assert:
13.9 The policy maker has an obligation to learn about, understand and observe all protocols of conduct and communication that are appropriate to the collectivity.
13.14 When generating policy, policy makers must always try and uncover the various (and potentially conflicting) viewpoints held by the collectivity members regarding the policy proposals and the way they might be implemented.
13.17 It is incumbent upon the policy maker to ensure that differences in cultural understandings are not used to exploit the collectivity, especially in a cross-cultural situation.
The general message is that policy-makers should make every effort to understand the putative policy dilemma from the perspective of the collectivity that will be affected by the policy. Neither the TCWG nor the Councils seem to have engaged that task, with the result that they have not fully considered the breadth of culture that is science.
For example, the mere fact that the Councils have taken on the task of setting an ethical agenda for all researchers in the country suggests they see themselves as a central character in the empirical universe. This is understandable if the perspective one adopts is that of the Councils, whose existence revolves around issues of research funding, and who, notwithstanding their dwindling budgets and waning role in the research funding process, remain an important and valued source of research funding in Canada. Similarly, the federal government that gives the research councils their life no doubt perceives itself as the center of this funding process, and has beliefs about how the research infrastructure of the country might be harnessed in the service of important national objectives.
But if one is open to the perspective of members of the research community, as an ethical policy-making process requires, then the centrality of the Councils, and even of government, disappears. Researchers do not do research because they are interested in obtaining funding from one the Councils. They pursue an area of inquiry because they are curious about some aspect of the world and want to understand it better, believe it is important to do so, and are passionate in their quest. It is the questions that drive the research, not the funding. Although issues of funding are important for many researchers, for many they are not, and there are many sources available for those who wish to pursue it. Similarly, my experience is that researchers believe their work contributes to their own definition of important national objectives, but the bounds of their contacts and work are not defined by national boundaries. Linkages are by way of ideas and shared interests, not because of geographical identification. Indeed, one of the consequences of specialization is that people with similar interests are highly unlikely to be found in one's own backyard (since having many persons with the same specialty creates redundancy in pedagogy), and are far more likely to be found at the other end of the country, or spread across the world.
Members of the TCWG may cast aspersions toward persons who view the Councils' efforts in the domain of ethics as yet another set of "hoops", as did one of the members at the information/discussion session I attended at UBC. Nonetheless, from a researcher-oriented perspective, the three granting councils' efforts to dictate the ethical agenda with respect to all research in Canada involving human participants seems coercive, at best, and a self-aggrandizing and control-centered effort to use their position to place themselves in the research management business, at worst.
A second theme to run through section 13 concerns the important role that members of the collectivity have to play throughout an ethical policy formulation process. Articles 6, 11, 12, 14, and 15, cast in parallel policy language, all bear on this issue:
13.6 When generating policy relevant to a collectivity, the policy maker may not begin until permission has been obtained from the appropriate authorities for that collectivity. Furthermore, obtaining group and individual consent before beginning any policy-making involving a collectivity, or its members, must be regarded as a minimum requirement.
13.11 In proposing policy so that it will best meet the needs of a collectivity, the policy maker should ensure that the collectivity has the opportunity to participate in the design of the policy.
13.12 The policy maker needs to provide the collectivity with an opportunity to react and respond to preliminary drafts of the policy before completion of the final draft, in the final draft and in all relevant articulations that are made of the policy
13.14 When generating policy, policy makers must always try and uncover the various (and potentially conflicting) viewpoints held by the collectivity members regarding the policy proposals and the way they might be implemented.
13.15 In principle, the process of policy generation with collectivities ought to be conceptualized and actualized as a partnership between the policy maker and the collectivity.
Examination of these articles again serves to highlight discrepancies that exist between the ethics the Councils advise, and those they practice. The assertion in Article 13.6 that ethical policy makers will seek the permission of authorities of the collectivity before they begin engaging in policy formulation that will affect that collectivity seems a reasonable one in several respects. Most importantly, it serves as the basis for meeting the principles espoused in Articles 13.11 and 13.15, i.e., ensuring that the collectivity has an opportunity to participate in the policy design process (Article 13.11), and thereby also ensuring that the desideratum of the policy-making process as a "partnership" (Article 13.15) is more than a pro forma add-on. It is only when policy "partners" are brought in early in the process that three crucial questions can be addressed.
First, it is only if permission is sought at the beginning of the process that one can ever meaningfully ask the question "Is this policy really necessary?". Otherwise, once the decision to make a policy has been undertaken, working groups have been appointed, and the machinations have begun, bureaucratic inertia virtually guarantees that the policy-agent will do its work, and seek whatever justification it needs to do so.
Certainly this is evident in the TCWG's draft policy in section 1, where the need to derive a new Code of ethics is addressed. In the very first paragraph of that section, the draft document asserts that the creation of the document "rests on the principle that in a democratic society our relationships with one another must rely on standards of conduct which have to be justified." (section 1, page 1). This statement seems quite reasonable, although the draft document notes this is particularly so because cases of research fraud and conflict of interest "have made headlines" and, notwithstanding that these are "isolated cases", it seems "people are asking whether the scientific community is able to police itself" (section 1, page 4). Just which "people" are asking is not specified, making it sound suspiciously like the rather ubiquitous "they" who are a convenient citation when the point is perceived by its author as more important than the fact that ostensibly justifies it.
Such empirically barren justifications undermine the integrity of the Councils' draft Code. Would it not have been more forceful to be able to assert that "A joint body comprised of representatives of the Councils, the universities, professional associations, faculty associations, research institutes, and those who most commonly participate in research involving human participants have agreed that both the scientific community and the general public would be well-served by the development of a single ethical code that would govern all research involving human participants in Canada."? Indeed it would be more forceful, but the TCWG cannot make that statement because it has not followed its own ethical principles.
In contrast to the view of these "people," a more balanced consideration might have resulted from a more ethical and inclusive process from the outset. Such a process might have noted the fact these are "isolated cases" suggests that the scientific community has done a good job of policing itself. In large part, I would suggest this has been accomplished through the development of discipline-specific and university-specific codes of conduct, which have the advantage of having been generated by members of those collectivities and, as such, involve principles relevant to the unique situations in which researchers of that discipline or group find themselves, and to those groups or persons with whom they normally interact.
Even if we grant the first point, i.e., that creation of a mega-code of ethical conduct is useful, questions remain regarding who is the most appropriate authority to lead the process of developing that code. The three granting councils, by fiat, have declared themselves the appropriate authority, apparently for two major reasons. First is simply that they took the initiative: "In 1994 the Medical Research Council of Canada (MRC), the Natural Sciences and Engineering Council of Canada (NSERC) and the Social Sciences and Humanities Research Council (SSHRC) undertook the development of common guidelines for the ethical conduct of research involving human subjects" (p. ii). The second motivation was the Councils' apparent belief that it was their duty to do so: "The Councils are accountable to the Parliament of Canada for the use of research funds, and consequently have an obligation to ensure that the research which they support meets ethical standards acceptable to the Canadian public." (p. xi).
Although I accept that the Councils have an obligation to ensure such standards are met, it does not necessarily follow that they have to invent yet another set of standards in order to meet that obligation. A simple statement that all researchers who seek funding from the Councils must first ensure their proposals have undergone ethical review would seem sufficient, given that there is no absence of codes in the disciplines already.
The putative objective of the Councils is to generate a code of ethics that is relevant to all researchers in Canada who engage in research with human participants. Though they have already violated their own principles by not including formal representation from universities, research institutes, other funding agencies, and representative research participants from the outset, we can still ask whether, in the absence of all of that required input at the design stage, the Councils have nonetheless managed to formulate a process that somehow compensates for their earlier negligence. Of particular interest here is the process by which members of the TCWG achieved their positions and why they, among the diverse research community of this country, have been chosen to represent that community in this policy formulation process.
Unfortunately, the draft document only names the members of the Working Group (in Appendix A), but is silent with respect to how and why they were chosen. Were members chosen on the basis of their ongoing subscription to the idea of the three Councils' centrality to the research process in Canada, and their continued success at obtaining tri-Council funding? Were such criteria mixed with other typical federal government representational criteria of gender, regional, and linguistic representation? Article 13.14 asserts that
13.14 When generating policy, policy makers must always try and uncover the various (and potentially conflicting) viewpoints held by the collectivity members regarding the policy proposals and the way they might be implemented.
Representing the diversity of science is not so simple as ensuring there is at least one member from each of the five regions into which the federal government typically divides the country. Though geographical representation is not an unimportant criterion by which to stratify membership, surely it is at least as important to ensure adequate representation among members of the research community in terms that are meaningful to the research community.
Some anecdotal evidence on the lack of diversity among members of the working group came in the information and discussion session I attended at UBC, where one member of the group described the experience of having served as a member. The individual commented that, although "occasional disagreements" arose during group discussion, the process of developing the draft Code was, by and large, quite a cordial one. The member observed that a definite spirit of "family" developed, and any matters of disagreement were resolved fairly quickly. Though the experience may well have been an idyllic one, we should consider whether such conviviality reflects any more than a relative homogeneity of opinion among the members. Such a consensus is simply not consistent with the process of science itself, which sees everything in the universe as a potential topic of scrutiny and debate, including how scientists see science, and how researchers view research. To expect the broad range of persons represented by that diversity to get along swimmingly while putting together a draft Code that will ostensibly govern all aspects of research conducted with humans in Canada seems as likely as a meeting of Canada's First Ministers coming to a quick consensus about how Canada will be governed.
The affiliations of the members of the Working Group, listed in Appendix A of the draft document, leave considerable doubt as to whether they meet the criterion of full diversity. No member of the working group is a non-researcher from any vulnerable population that is commonly the subject of research. Six of the members have medical degrees, two have backgrounds in law, and there is one member each from Anthropology, Psychology, Philosophy, Engineering, and Applied Ethics. Disciplines such as Sociology, Criminology, Political Science, Economics, and Human Geography, have no representation at all. All the members also seem to be quite senior in their positions, which means there are no researchers representing those at lower ranks. No biographical information is given on the extent to which the members of the TCWG vary in their experience with qualitative or quantitative methods; tend to adopt more critical or agency-centered perspectives; include representatives of socially and scientifically marginalized groups such as Aboriginal, Black, Third World, or radical Feminist academics; and/or whether they have preferred and sought or avoided Council-funded research.
I have no doubt that the members of the Working Group are honourable persons who are distinguished in their fields, and who will do their very best even when challenged with a Sisyphean task. But neither their honour nor their level of achievement is the issue here. Instead, the question is whether the persons on the Working Group, as a collectivity, adequately represent the diversity of Canadian researchers and research institutions who will be affected by implementation of any eventual Code. All indications are that they do not.
The Councils thus have done a disservice to members of the Working Group in two ways. First is that the members of the Working Group, in trying to execute their charge in good faith, are forced to imagine what the concerns and perspectives of those who have been denied direct participation would be. Surely it would be preferable to have that broader range of persons make their own representations and play their own parts in the discussion process. To suggest any less would be unethical. The second disservice is that it is the members of the Working Group who are saddled with the task of justifying the unjustifiable, i.e., they must somehow justify to themselves and to the Canadian research community why, for any reason other than the coercive power of the Councils, the research community should willingly receive and implement a code of ethics that has been generated through a process that is inconsistent with that same code of ethics. Would it not have been simpler for the Councils to follow an ethical policy-making process in the first place?
It is all very nice that the Councils have given persons who have no voice an opportunity to comment on the draft document, but "real" participation, as the draft Code itself espouses, involves more than "input". It requires an approach that aspires to a "partnership" in more than just words (Article 13.15). This involves notification and consent by all affected collectivities at the outset of the process before any commitments to even engage the process are made (Article 13.6). Then, if the decision is made to go ahead, it requires ensuring that the participation of those affected is real and material at every step from preliminary design (Article 13.11), through interim drafts, to the final product (Article 13.12).
The Councils' commitment to an ethical policy-making process would have ensured that, if the consensual will was to go ahead with the development of such a Code, the result would be something that enjoyed the full moral support of all those affected by it. It also would no doubt better meet the Councils' own criterion of "pragmatism" by ensuring that the emerging Code would be both implementable and implemented on other than a coercive basis. But, again, the Councils have fallen short in their moral imperative because they have put themselves ahead of their own ethical principles, and engaged their policy-making process without full participation and consent. It is ironic that it is exactly that same sense of self-righteousness of the "goodness" of one's cause, and the denial that goes along with it, that is so often at the source of the types of ethical violations the Councils cite as their raison d'être for engaging this process in the first place.
Articles 13.5 and 13.19 articulate the ethical policy-maker's duties with respect to ensuring the collectivity is not adversely affected by any policy generated in the policy-maker's own self-interest:
13.5 The policy maker must seek to protect the members of the collectivity, and the collectivity itself, from harm.
13.19 All policy must be generated in a manner that minimizes both inconvenience to the members of the collectivity, and disruption of the collectivity.
Harms can arise in both intentional and unintentional ways. In the case of the three research Councils, I am unwilling to believe their policy-making on matters that affect the Canadian research community are motivated through malevolence. But Canadian history has many examples of persons who have tried misguidedly to "do good," with horrendous effect. Canada's Indian policies are but one such example - generations of Ministers of Indian Affairs and Indian agents all believed they knew what was best for Aboriginal peoples, and attempted to "do good" on the basis of those beliefs, but the deleterious effects of those policies are by now so well known they are a virtual cultural truism. So much of that oppression could have been avoided had those same Ministers only followed the ethical principles now espoused by the TCWG for researchers, a fundamental part of which would have involved the participation of Aboriginal peoples in that process, and their full and informed consent to be so engaged. For the research Councils to repeat these mistakes of history, when the draft document they have prepared shows they clearly understand what an ethical policy-making process with a collectivity under their influence would entail, is nothing short of travesty.
The Councils have a unique and positive history when it comes to their role in helping the Canadian research community foster and nourish a research infrastructure. One might affirm the obligation is virtually fiduciary, and a part of its basic mandate. It would seem beneath the Councils to ignore their own ethical dicta in the policy formulation process. Doing so would seem not only a disservice to the Councils and their reputation but, because of the lack of the more comprehensive cultural understanding that should have been brought to the process, also places the long term health of the research community at risk. Just how this might occur is the subject of the next section. In every case, the deficiencies of the current draft have emerged from the Councils' failure to follow the ethical principles discussed above.
The Councils have paid a price for having made the choices they did. Though they aspired to generate a document that would pertain to all who do research with human participants, they were negligent in meeting the ethical criteria that would ensure participation of all affected persons and groups from the outset. The apparently narrow criteria used in making their choices for membership on the Working Group has resulted in a draft Code that has strengths that reflect the expertise of the membership, but is flawed by its lack of inclusion of those who practice other forms of research, and who adopt other perspectives. The end result is a draft Code that would be unjust if it were implemented, since those who do not see themselves and their work addressed with empathy and understanding are left to the margins of the research enterprise, and may be adversely affected by rules and principles that assume contexts other than those in which they work.
With respect to the strengths of the draft Code, I would note it is superior in many respects to previous Codes generated by the former Canada Council and inherited by the Social Sciences and Humanities Research Council. The current draft Code goes a long way toward recognizing and rectifying the considerable power imbalance that exists in situations that involve a powerful researcher and vulnerable research participant, for example. It is also gratifying to see the TCWG address some of the unique considerations that come into play when engaging in research with collectivities such as First Nations peoples, who have been as misunderstood and oppressed by insensitive science as they have been by colonial regimes. Notwithstanding these strengths, the weaknesses of the draft document are legion.
Would it be offensive to begin by saying that "The problem in Canada these days is that we have too much cultural diversity in our population"? I believe it would be, and assume the reader shares that belief. I wonder, therefore, why the Tri-Council Working Group would extol cultural diversity in the broader society, but lament it in the realm of research methodology, when it states that:
In the human sciences ... there appears to be an increasing problem of diversity of methodological models. (section 1, p.3).
Such a statement belies a group with narrowly defined membership criteria, which has resulted in exclusion of those who exemplify the "problem" by engaging methodological models other than those practised by the Working Group.
In contrast, many researchers beyond the Working Group see such diversity as a sign of strength and positive growth in social science, particularly to the extent it signifies a growing perspectival pluralism. Indeed, support for cultural diversity virtually requires similar support for methodological diversity. Expressions of cultural tolerance are empty if they are not accompanied by respect for the epistemological variation that accompanies it. Conversely, methodological antipathies can hardly be the basis for inter-cultural respect and understanding. If the TCWG intends to develop a code of research conduct that is relevant to the full range of research that involves human participants, then it should begin by embracing the plurality of methods and methodologies that will involve. Anything less shortchanges the very science it seeks to serve.
Further manifestations of the Working Group's limited range of experience is evident at page 8 of section 1, where the draft document offers an assertion for the first time that is repeated many times thereafter:
The people who take the risks in research are the subjects, not the researchers and their teams, or the financial supporters.
The statement is true in those situations where a powerful researcher deals with a vulnerable research participant - such as in clinical trials and manipulative experimental research of the type practiced by the medical researchers and experimental psychologists who are represented on the Working Group - but there are many other situations in which researchers do encounter risks, e.g., where a vulnerable academic is dealing with a powerful government, corporation, or agency. Two examples that occurred recently in my department are illustrative.
The first example concerns a former Master's student in my department, George Rigakos, who did his thesis research with a Lower Mainland police department (see Rigakos, 1994, 1995). The study examined police response in situations where battered women who had received protection orders and injunctions from the courts notified police (often in emergency situations via 911) that their former partners had violated the terms of the orders. How often did the police come to their aid? How often were violators arrested and charges laid? And what was the climate of attitudes and beliefs among police officers that would help explain the data? These were among the questions George addressed in his research.
The two of us who supervised his research, and all those on his examining committee, felt that George had shown exemplary ethical form in the design, execution, analysis and write-up of his thesis. He had fully informed the Chief Constable of his research plans in writing, and the police department had agreed to cooperate in the research. The course of George's research followed the protocol he had outlined in his proposal. A copy of the penultimate draft of the thesis was sent to the police department so that they might comment on any inaccuracies and/or offer alternative interpretations. The department was also informed about the defense date for the thesis, was invited to attend, and had the opportunity to ask questions and make comments after the examining committee had exhausted its own inquiries.
The police department did not make any response to the penultimate draft. A member of the police department did indeed attend the thesis defense, but did not ask questions or make any comment, and joined us all in congratulating George after the defense's successful conclusion to a job well done. The study ended up being quite critical of the police department's practices in the domain studied, but was offered, and seemed to have been received, as useful criticism by the police. The general feeling at the time was that the study had shown how a responsible researcher could engage in potentially critical research with a responsible police department willing to engage in reflection regarding its practices, to their mutual interest and benefit. End of story; or so we thought.
Nothing much further happened until about six months later, when Mr. Rigakos was chosen as the recipient of the Dean's Gold Medal for graduate studies in the Faculty of Arts, which is given to the graduating student who best combines high academic achievement, excellence of research in the thesis, and timeliness in the completion of his or her programme. The University newspaper did a story on George and his research as part of its build-up to the Convocation at which he was to receive both his degree and his award, and the larger local newspapers picked up on the story and ran it in their dailies. That was when the proverbial feces hit the fan, and George (who by then was in Toronto engaged in doctoral study) began to receive phone calls from a member of the police department demanding that he retract his findings, or face a possible law suit.
George phoned me, and the tension in his voice was quite evident. He had followed ethical protocols, acted in good faith at every point of the process, and was now being harassed by a powerful social agency that seemed prepared to make his life miserable if he did not retract the findings they had been given every opportunity to comment on before. My reaction was to suggest that the police department had no legitimate grounds on which to sue, and that their self-serving actions were probably little more than temporary bluster that would subside as soon as George's research became "yesterday's story", and the police were no longer receiving phone calls from the media. Fortunately, I was correct in this latter prediction, and the phone calls George was receiving ended once the media attention died down, without him having retracted his conclusions. In contrast to the TCWG's assertion that only research subjects face risks, I would suggest that, in this instance, the researcher did as well.
By addressing in the draft Code only the subset of research situations in which the researcher is powerful and the human research participant is vulnerable, the Working Group not only correctly empowers the vulnerable participant, but also incorrectly creates an even greater power imbalance in situations that involve a powerful research participant and a vulnerable researcher. Is there any point in the process when research participants can no longer withdraw their data, or could the police department have used the TCWG's draft Code to assert their desire to withdraw participation if the data revealed a state of affairs that was not flattering to the police? Given that the police have "social structures, common customs, and an acknowledged leadership" (see Article 13.1), can they assert the unique sets of rights that are specified for collectivities, and use those sections as a way to constrain possibilities for more critical research? Finally, can results that are critical of the police, and hence potentially seen as "tarnishing" their reputation be construed as "adverse consequences" for which the researcher can be held liable?
One would hope that mutual respect and civility would be the standard operative research climate when researcher and social agency meet. Nonetheless, Rigakos's experience with that one police department suggests participant self-interest can create problems for the researcher notwithstanding the fact his or her behaviour is "ethical" at every stage of the process, since what is contentious is not the behaviour, but the researcher's findings and potentially the point of view involved in interpreting them. This is particularly alarming given the increasingly litigious proclivities we seem to be absorbing from our American neighbours. Arming already powerful research participants with section after section that can be used exploitatively against researchers who act in good faith, but who produce the "wrong" data from the perspective of research participants, can only serve to undermine possibilities for critical social research, and is anathema to every principle regarding the integrity of data and freedom of inquiry that science holds dear.
The best the researcher can hope for in such situations is to be supported by his or her ethical review board and/or the TCWG, but the TCWG gives no indication that it is concerned with the rights of researchers and/or will support them in such a situation. As for university ethics review boards, the case study below suggests that researchers who count on support from the university boards that examine their proposals may be in for a rude awakening.
Another of our former Master's students, Russel Ogden, did his thesis research on assisted suicides, an action that is currently illegal in Canada (see Ogden, 1994). His data involved interviewing persons with HIV or AIDS regarding their attitudes about assisted suicide, as well as interviewing others who had been in attendance when assisted suicides had occurred. Ogden felt it important to go beyond the "othering" that often occurs with the socially marginalized, and to give a voice to persons who were intimately associated in one way or another with the phenomenon. His proposal to the SFU ethics committee indicated he felt it was paramount that he offer guaranteed confidentiality to his participants. Without such guarantees, it is unlikely he would ever get the detailed information he sought, since participants would be highly unwilling to reveal their presence at or participation in illegal activities for fear of prosecution. Such research is not unusual in criminology where the social dynamic involved in constructing the boundary between legality and illegality is of particular interest, and the same can be said of much research in sociology and anthropology where processes of social definition and censure receive frequent attention. In order to do the research in the first place, and to ensure its scientific integrity, Ogden's guarantees of confidentiality to his research participants had to be unequivocal, and he indicated to the ethics committee that he was prepared to live with any consequences that might arise from standing by that guarantee. The SFU ethics review committee approved his proposal.
Ogden's research went well, but it so happened that the period during which he was writing his thesis coincided with the period in which Sue Rodriguez was generating national headlines for her efforts to change the law in anticipation of her own assisted suicide. An even greater coincidence came about when a newspaper article concerning Ogden's thesis research appeared, and Sue Rodriguez died in an assisted suicide, on the same day. As one of the few experts in the area, Ogden was often called upon by the media for comment. Not long thereafter, Russel received a subpoena to appear in Coroner's Court, where he was asked to give testimony regarding the circumstances of a death about which it was believed he had gathered relevant information during his thesis research. Doing so clearly would have violated the confidentiality guarantees Ogden had given his research participants. He refused to give that testimony, and was immediately held in contempt of court by the coroner.
My hope is that any university would see this as a situation in which an argument of "participant rights" and "researcher privilege" for a "greater good" would be compelling, but I am embarrassed to say that the response of my university was to tell Ogden he was on his own. They offered no moral, advisory, financial, or legal support whatsoever. After some internal pressure, the University president eventually gave him $2,000 toward legal costs for purely compassionate reasons, but otherwise left it to others (most notably his senior supervisor and two researchers from the University of British Columbia) to come to his aid. Notwithstanding the very real prospect that he might end up in jail, Ogden stood his ground, and proceeded pretty much on his own. His legal argument was that a recognition of "researcher privilege" in this instance served a "greater good" and hence deserved "public interest privilege." Presenting this defense involved incurring $11,369.38 in legal costs. In the end, Ogden's defense was recognized and accepted by the court, and Russel Ogden became the first researcher in Canada to establish a common law precedent of "researcher privilege" in a Canadian court, albeit a fairly low level one. Since then, the university has refused to pay the rest of his legal costs (for which Ogden is now suing them), and has done nothing more than to insert a new clause on the first page of its ethics form that "red flags" any proposal in which the researcher might hear about illegal activities engaged in by research participants.
Once again, I would ask where the location of the threat was in this research. Certainly Russel Ogden was threatened; he placed his liberty in the hands of the court. And his research participants were also threatened, though not because of Ogden, who safeguarded their interests in a manner that showed what I believe is considerable ethical responsibility, and with a maturity and determination far beyond his years. Indeed, the main threats to the rights of the participants in this instance came from the Coroner, who exerted the power of the state by invoking the contempt of court charge, and from Simon Fraser University, who did nothing to support a researcher whose proposal they had approved, and whose willingness to pursue an important ethical and methodological principle should have been lauded. Where in the draft Code is there any indication that the researcher who follows his or her conscience should and can expect support from the REB who approved the proposal, and the TCWG for formulating the principles on which that approval was based?
Perhaps again because of limitations with their familiarity with the literature in the area of sociology of science, the TCWG repeatedly treats as straightforward many matters that are in fact contentiously debated. For example, the TCWG offers what, in most cases, would be the apparently unproblematic idea that researchers must
pay attention to the consequences of their research (whether positive or negative) for the people who participate in it. Research is a complex social activity; it entails some social responsibilities for the bodies which fund it or which help carry it out" (section 1, p.9).
Later, in section 11, the following Articles of the draft Code are espoused, which manifest that principle:
Article 11.1 There is a collective and ethical responsibility on the part of the sponsor, the institution, the REB and the researcher to ensure that provisions are in place to meet legal liabilities for injuries or losses suffered by research subjects (including liabilities/compensation to the subject's dependents).
Article 11.2 If an adverse outcome occurs and research subjects suffer harms or losses, they must be informed of their rights. The REB must be satisfied that appropriate information about indemnification or compensation will be provided to the subject at the appropriate time if such an event occurs.
These Articles ignore the very complexity that the TCWG ostensibly began by recognizing. What if, in the process of doing research, it is clear that a "problem" that arises is a product of the way the agency is doing its work? What if empowering some means that others lose their monopoly on power? Can a respondent or group of respondents label the research "unethical" because there are negative impacts on their formerly unchallenged position of power, or because it brings them some degree of disrepute? Certainly that appears to have been the situation in the case of Rigakos and the police cited earlier.
In another example, a colleague of mine engaged in a long term research project in which he followed persons who were assessed in a forensic therapeutic setting for their degree of "dangerousness" ( e.g., see Menzies, 1989). In addition to observation of the initial assessment process, extensive records were maintained that allowed follow-ups over a period of many years concerning the extent to which the clients actually exhibited "dangerous" behaviours in accordance with psychiatrists' predictions. The results indicated not only that the psychiatrists who made these evaluations did so with a rate of success that was scarcely better than chance, but also that the best predictor of whether someone was declared "dangerous" was the comments made by the police when they first brought the person in. This led Menzies to ponder just how much the processes he observed were actually evidence of "decisions" that emerged from the evidence, as opposed to comprising little more than psychiatric "justifications" of judgments by the arresting officer.
It is interesting to note that, although his monograph has fared well over time in reviews done by experts in his field, Menzies' research also was roundly chastized by members of the psychiatric profession who believed it was "unethical" to the extent it questioned the efficacy of psychiatric assessments of dangerousness, thereby bringing the profession into perceived disrepute. Menzies asked whether it was not even more ethical for the researcher to alleviate an apparent injustice in an effort to bring about change.
Menzies's research also begs the question of who exactly the "participants" and "stakeholders" are whose concerns should be safeguarded in his research - The funders? The psychiatrists whose decision-making he observed? The clients who were assessed and followed over time? The forensic centre that provided access? The taxpayers who fund such institutes and assessments? All of the above? Menzies attempted to consider all those actors, but was particularly cognizant of the huge power differential that exists between those who bring in and assess the clients, versus the highly vulnerable clients who have no choice but to be subjected to such assessments, and whose lives are hugely affected by the outcome. Because the TCWG's draft Code is founded upon a highly constrained view of what is recognized as "research", it is silent with respect to what issues might be considered when resolving competing claims among respondent groups.
Near the beginning section 2, the TCWG appears to recognize the limitations of law. The draft Code states:
The law provides some practical guidance insofar as it reflects ethical values. While the law has the advantage of being definite, detailed, and authoritative, it can also be slow to respond to new developments and evolving moral sensibilities. Furthermore, the law is in general concerned with what is enforceable by legal authorities. The situation is compounded by legal and jurisdictional differences. (section 2, p.1).
Though my years in SFU's School of Criminology would lead me to question most of the TCWG's assertions - particularly the extent to which law is "definite", "authoritative" and primarily concerned with "enforceability" - the TCWG's sense of the limitations of law regarding ethical issues is well-taken. There are other instances where the TCWG reaffirms its sensitivity to the idea that "ethics" and "law" are not synonymous. For example, the TCWG notes that
Justice is the ethical principle the law aims to serve. Conduct is not necessarily ethical because it is legal. Similarly, conduct that can be justified ethically is not necessarily legal... (section 2, p.3)
However, when it later discusses "privacy and confidentiality", the TCWG seems to give that fallible law paramount status when it suggests that
Subjects should be told of any significant shortcomings in privacy and confidentiality safeguards (including, for example, the right of authorities to subpoena research records)." (section 2, pp.12-13)
Elsewhere, in a segment dealing with "compulsory reporting," the TCWG repeats that
Subjects must be made aware during the consent process that information will be kept confidential except when required by law. (section 6, p.2)
These assertions are similar to SFU research policy R20.01, which was formulated immediately following the controversy over Russel Ogden's M.A. thesis. Those researchers whose proposals are now flagged because they deal with "deviant" subcultures who might report having been involved in illegal activities are now required to tell research participants that
Any information that is obtained during this study will be kept confidential to the full extent permitted by law. ... However, it is possible that, as a result of legal action, the researcher may be required to divulge information obtained in the course of this research to a court or other legal body. (SFU Policy R20.01)
It is unclear to me how either SFU policy R20.01 or the TCWG's assertions in sections 2 and 6 help to promote a healthy exchange of information between researcher and participant. Indeed, one could argue they serve only to undermine validity, which, in turn, according to the TCWG, is a prerequisite for a study to be ethical, so that the policy itself creates a catch-22 that makes such critical research "unethical". The policy also turns an egalitarian relationship into an adversarial one, which hardly seems consistent with the spirit of the draft ethical Code.
That both the TCWG and SFU would seem to make ethical desiderata subservient to law suggests the TCWG might have joined SFU in advising Russel Ogden to cooperate fully with the court, even though doing so clearly would have put Ogden's research participants at risk, would have undermined the trust that respondents have for researchers in general, and effectively would have closed the door for such marginalized persons ever to have a voice through the medium of research. Do persons who court the edges of legality have lesser rights to have their voices heard in a confidential setting whose integrity is inviolate? Do ethical researchers never question or challenge the law? And, if, in the best interests of his or her research participants, a researcher is willing to be held in contempt of court to preserve the confidentiality of records that are subpoenaed, is it not possible for that to be an entirely ethical stand?
A broad vision of the research process requires recognition that well-meaning persons will not always engage in research that reflects status quo views, and any Code of Ethics should explicitly allow for well-intentioned, well-designed, and thoroughly "ethical" research by those who do not share dominant points of view. Failing to do so requires one to question the ethics of ethics, since ethical Codes thereby become just another tool for those whose objectives are to impose a point of view. That is anathema to the noblest traditions of science, which, as a self-appointed guardian of quality and ethics in research, one would have hoped the TCWG would seek to uphold. Allowing it to proceed is contrary to the TCWG's own ethical principles regarding the need to understand, respect, and create no adverse consequences for collectivities by their actions.
The researcher also should be able to count on the support of his or her Ethics Review Board and the TCWG for his/her defense of the rights of participants. Yet, like SFU, the TCWG draft Code is silent when it comes to articulating its support for researchers who engage in behaviour they sincerely believe is "ethical," and which has undergone a process of ethical review. It seems ironic that the draft Code goes into such detail outlining the many obligations that researchers have to protect the welfare of and empathize with the perspective of those vulnerable humans who participate in their research, yet the TCWG and universities like SFU have no similar obligations to protect the welfare of and empathize with the sometimes vulnerable researchers whose work they have a mandate to facilitate.
On page 1 of section 3, the draft Code states: "It is essential that members of the REB avoid individual and institutional conflicts of interest." I wondered how the TCWG intended that to be interpreted. Though it deals primarily with researcher conflicts of interest, "conflict of interest" is later defined as
A situation in which the researcher has or appears to have a private or personal interest sufficient to appear to influence the objective exercise of his professional judgment towards his/her official duties. (section 9, p.1)
This definition of conflicts of interest seems overly narrow, particularly insofar as it addresses only personal/private interests that might conflict with REB members' proper ethical considerations of proposals that come before it, and does not address professional role conflicts that might lead members to give matters other than the welfare of research participants and researchers their primary consideration.
My worries emerge particularly from my university's handling of the Russel Ogden affair, though they are not limited to that incident. Over time, my confidence in the REB at my university has waned considerably. There was a time when I believed their primary concern was the welfare of vulnerable research participants, in the context of a general mandate that the role of the university was to do research in an ethical manner. I recall a case, for example, that occurred during the one year I served on SFU's ethics review committee, in which an individual had been injured during a physiological experiment that involved the administration of electrical impulses to a particular muscle group. I was curious how my colleagues would respond to the case, and was impressed to see their foremost concern was to ensure that the individual received the best of medical care and to minimize any repercussions that arose from the injury. Although there was some discussion that a litigious person might make the case that our actions comprised an admission of liability, and there was some ambiguity whether the experiment itself was the source of the injury, the view was unanimous that concern for the individual's health came first, and that considerations of liability would sort themselves out later.
My university's more recent handling of the Russel Ogden affair gives me concern that fair and ethical treatment have now taken a back seat to concerns about liability, and it is easy to imagine situations where liability concerns and ethical treatment might be in conflict. In the physiological experiment described above, for example, Canada's system of medical care ensures that the injured research participant would have had access to appropriate treatment whether the ethics review committee intervened or not. Could an ethics committee more concerned with liability issues have convinced itself that the more prudent course would be to deny liability and wait for the research participant to take the legal initiative? Before Russel Ogden, I thought not. Now I am less sure.
Just as worrisome is that an REB with liability concerns in the forefront may be more likely to engage in "safe" decisions when asked to examine proposals, in order to protect the university from possible financially untoward consequences. Though one should obviously err on the side of safety when it comes to protecting the rights and health of vulnerable research participants, there are other instances where significant advances require bravery and leaps of faith in order to gain the knowledge or to enable changes in a society that has an imperfect record in the area of social justice. It takes considerable sense of purpose and courage, for example, to stand in front of a judge and, for the sake of a perceived greater good, refuse to divulge sources to whom confidentiality has been guaranteed. It takes a similar sense of purpose and courage for a university administration or their designated REB to stand behind that researcher in court and affirm that it is important, for a perceived greater good, to defend participant rights in a situation that involves protection of a vulnerable and socially marginalized group.
Beyond Russel Ogden's case, I am particularly worried about the impact a liability-oriented decision-making bias would have for more critical social research in general, since the easiest way to manage liability is to engage in preventative decision-making that is obstructive of research that is "too controversial" or has the potential of "rocking the boat". At its most direct, this may involve saying "no" to a project, but may also involve more subtle control regimens as more forms that need to be filled out in greater detail, longer turnaround times, a more complex set of rules to abide by, greater scrutiny during the research process, and fewer rights for their often marginalized research participants, which makes it just that much more difficult for the latter's voice to be heard.
When viewed in this manner, it becomes an interesting question whether senior university administrators are appropriate heads of REBs, since, in my understanding of "conflict of interest," many of the constraints of their roles (such as risk management) may well conflict with the appropriate execution of their ethical responsibilities broadly defined. My own suggestion is that there be some separation of roles in which REBs and their members are separate and apart from the university administration, with the sort of independent decision-making status that is accorded offices such as Ombudsperson.
The TCWG also could help matters by acknowledging such issues and the legitimacy of a broader array of research from the start, which would require a broader vision of research than guides the current draft document. By adopting the narrower view, social scientists who adopt a more critical perspective are given the same deviant status as their often more marginalized research participants, since those whose model of research is more directly addressed by the draft Code face fewer questions, less surveillance, and minimal restraint.
For example, experimental psychologists, who are fond of employing deception in their research, are clearly addressed by section 5 of the draft Code, which considers exactly that situation. Similarly, in section 18, the draft Code addresses the unique dynamics of research involving clinical trials, which has produced several contentious examples that were instrumental in the formulation of codes of ethics in the first place. But the TCWG has embraced both those empirical traditions, included at least one representative of them in its membership (or 6 in the case of clinical trials), with the end result that practices that many of us view as ethically problematic are made a matter of bureaucratic routine with clearly delineated standards, and which takes for granted the right of those researchers to engage in that type of research. The lesson should be apparent: an appropriate Code would more adequately embrace the full range of epistemologies and practices that are a part of contemporary social research, and more fully incorporate representatives of those varying traditions in the process of formulating any ethical Code.
On pages 3-4 of section 3, the TCWG specifies the membership of REBs, which requires that at least one member without affiliation to the institution (or 20% of the minimal REB membership) is to be appointed through recruitment from "the community served by the institution and/or potential research subjects". As I have argued elsewhere (Palys, 1992), this is clearly a positive development, since too much of the ethical review process has relied on the participation of elites, those who are essentially "insiders" to the research process, and those, like governments and their delegates, who often have other agendas that are incompatible with development of a truly diverse research strategy. Participant pools are not without their own agendas, but, as an integral part of the research process, deserve a place at the discussion table.
I am less enthused about the way that the TCWG has worded that particular section, however, since it is clear that someone from the research division of Merck Frosst (a multinational pharmaceutical firm), for example, could be construed as a person without affiliation to the university and a "member of the community served by the institution", but the presence of such a person does nothing to address the basic concern that ideally would have motivated inclusion of that element in the draft Code in the first place. My own preference would for REBs to be encouraged to include representation from persons solicited from among the vulnerable populations who are most commonly the subjects of research by that institution. That would more clearly address the ongoing problem of decisions being made by elites for elites, would bring an important and often neglected perspective to the ethical review process, and would provide a firm foundation for a process of mutual education.
Under the heading of "coherence, prudence, and pragmatism", the TCWG states:
This ethical Code of Conduct for Research Involving Humans attempts to reformulate, to specify, and to define more closely certain moral limits and certain procedures in research involving human beings, with a view to coherence in principles, to prudence in the safeguarding of persons involved in research, and to pragmatism in the application of principles (section 1, page 8).
I would suggest the need for another principle, which is to use as light a touch as is necessary and as minimal an intervention as possible when formulating ethical dicta. To do otherwise provides opportunities for self-interested control of the research process by centralized authorities in an area that traditionally has been governed by, and thrives best in an atmosphere of, freedom of inquiry.
Surely one role of the three councils is to help promote a healthy national research environment, part of which involves ensuring the preservation of those freedoms. Modelling such desiderata by intervening in the research process only to the extent that is demonstrably necessary, should be a primary consideration of the Working Group. It was disappointing, therefore, to see no consideration of those issues in the draft document. At one point, the TCWG soft-pedals the control issue when it asserts:
This Code of Conduct would be used inappropriately were it considered merely a blueprint, checklist or a recipe to be followed. Rather, it provides an opportunity for the researcher to think through, re-evaluate and engage in resolving ethical issues respecting research with collectivities" (section 13, page 10).
This is consistent with the message that was delivered at a discussion and information session I attended at the University of British Columbia on 5 June 1996. One of the members of the Working Group asserted that the intent of the draft Code was "educational"; that it was "not to be interpreted literally"; and that its intention was merely to "sensitize" researchers to issues that warranted their "reflection and judgment". Several members of the audience suggested the member was being optimistic, i.e., that the verbiage of the draft Code is far more prescriptive than she intimated, and hence promotes its use in such a manner.
Since that meeting, I have done a word count based on the Articles of the Code. My interest was in comparing the relative frequency with which more "guidance"-oriented verb and adverb forms were used in the draft Code, as opposed to more "prescriptive" (ad)verb forms. I reasoned that if the TCWG's intention was to create a document that was more "educational", "sensitizing", and that intended to promote "reflection and judgment", then we could expect a greater frequency of more guidance-oriented (ad)verbs. If, on the other hand, the TCWG was intentionally or inadvertently creating a more control-oriented document, then a greater frequency of prescriptive (ad)verbs would be observed.
The three more "guidance"-oriented words I counted were "should" (e.g., as in "Researchers should consider..."), "normally" (e.g., as in "Researchers normally will consider ..."), and "balance" (e.g., as in "Researchers are expected to balance ..."). Such verbiage is consistent with the intention of sensitizing researchers to issues that should be considered, while still recognizing researcher discretion. The three words appeared 37, 9 and 2 times, respectively, i.e., for a total of 48 guidance-oriented words.
The only more prescriptive word I looked for was "must", which allows no room for researcher discretion. It appeared 138 times. Whether the TCWG intends it or not, this indicator is consistent with the perception that the document they created is indeed far more prescriptive than educational in tone, and, no doubt, will be used that way when implemented. For the sake of science, I would urge the Working Group to reconsider its heavy-handed approach.
The evidence elsewhere in the draft document is again that the TCWG has used anything but a "light touch" in its intervention. Decisions that were formerly seen as researcher-based are now treated as non-discretionary matters that are more appropriately considered by the REB and TCWG. On page 2 of section 1, under "terms of reference", the draft Code asserts that REBs are "to ensure adherence by researchers to the Tri-Council Code of Conduct for Research Involving Humans". Is the TCWG saying that all research done in every university, regardless of whether that research is funded by any of the three councils or not, is to be done in a manner dictated by the TCWG? If it wishes to ensure compliance with its own ethical code among those who seek their funding from one of the three granting councils, then that is its right. But why, and on what basis, does the TCWG believe it has the right to impose such adherence across the board?
On page 3 of section 1, under "models of review mechanisms", the TCWG asserts that a comprehensive ethical review involves consideration of both the science and the ethics of all proposals, and bases this on the assertion that any research which is not scientifically valid cannot be ethical. This assertion is problematic for several reasons. First, it ignores the extent to which "scientific validity" is itself a term that is a site of scientific debate - although perhaps this gets back to the supposed "problem" of diversity that the TCWG alludes to in section one. Second, there is much research that gets done - by students as part of course requirements - which often is not particularly strong on validity, but where the whole intention of the exercise is for them to try out their ideas and learn from their mistakes, in an environment in which the costs to participants (often family members or friends) are minimal (e.g., completing a questionnaire; observing a naturally occurring behaviour). Third, this requirement that the TCWG be let into the "quality" arena is an insult to the university faculty who do and supervise state-of-the-art research that is regularly published and otherwise disseminated throughout the world. As such, it is hard to see this move by the TCWG as little more than an effort that provides the basis for control over the kinds of research that are done in Canada, and is a threat to those engaged in critical research that challenges the boundaries to existing understandings.
Near the bottom of page 3 in section 1, the TCWG notes how government granting agencies are no longer the "prime mover" in many areas of funding, and that "the laws of the market and considerations of profit" are entering more and more into the research process. By leaving it as a general commentary, the TCWG would appear to be putting its de facto seal of approval on that trend. Personally, I lament it.
The issues for me are ones of balance and diversity. As I have argued elsewhere (e.g., see Palys, 1988, 1997), an over-reliance on funding from those driven by "the laws of the market and considerations of profit" undermines the diversity of research conducted, and thereby undermines what should be a core principle of a healthy overall national research strategy. In particular, it represents an ethical problematic to the extent that greater reliance on those who emphasize market and profit-driven motives serves to undermine critical research, and may diminish accessibility to information. If the three granting councils are to remain a voice for all researchers, and continue their important role as one of the few venues that promotes the benefits of more basic research, then I would advise the Working Group to express greater caution regarding these "recent trends" in their document, if the issue is to be addressed at all.
Free science is part of a healthy research strategy to the extent it emphasizes long term objectives, the open exchange of information, and values understanding for its own sake. In contrast, the market emphasizes shorter term objectives, takes a narrower view of which aspects of life are worth understanding, and is covetous of discovery, which is seen as patentable and profitable through monopoly and/or royalty. But surely one of the core principles of science is that scientific knowledge should be free and accessible to all. This is so not only for reasons of social justice, but because (a) taxpayers and consumers are the ones ultimately footing the bill, and hence deserve full participation in whatever rewards accrue from scientific exploration and understanding; and (b) public dissemination of knowledge is the primary means of quality control in science, through such mechanisms as opportunity for replication, and independent peer review. The TCWG should be more cautious about embracing trends that may undermine the open exchange of information by which scientific activity flourishes.
If the destiny of our time is to go through a period where knowledge for its own sake is undervalued, and the three granting councils see their budgets dwindling away with myopic promises about how economically driven entities are a progressively more common source of research funding, then my preference would be for the three councils to get into some line of employment other than the research management business, and limit its interventions so as not too overly constrain those of us who are in it for the long haul. Not all the research in Canada is done with tri-council funding, nor even all the most important research. For it to move and start dictating the terms on which everything will happen is beyond its historical and moral mandate.
The first question I posed in this analysis was to ask whether the TCWG followed its own guidelines in the construction of the March 1966 draft Code of Ethics, since surely the formulation of a Code of this sort should be done in a manner that is beyond ethical reproach. The obvious conclusion, bordering on nolo contendre, was that it failed that test.
To construct a Code of Ethics using an unethical process is to assert that the end justifies the means, which is most certainly contrary to any ethical code that I have ever read. That this would be done on a coercive basis with (1) a university community whose every methods text and every methods course, in the social sciences at least, includes discussion about ethics in research; (2) university ethics review boards that were voluntarily set in place decades ago; and (3) professional associations whose involvement in drafting Codes of Ethics and educating their members regarding ethical issues predates the Councils' efforts by at least a decade, is a reprehensible practice that represents paternalism at its worst. That the process would be engaged with such flimsy justifications as "people are asking..." and a few headlines is insulting in the extreme.
It is fascinating observing the amount of time the TCWG spends scrutinizing, questioning, and in many cases dictating the motives, practices and procedures of researchers and REBs in the draft document, without ever once considering its own role in this venture. The idea that a set of government agencies would give itself the power to band together and formulate a code of ethics that it coercively asserts will be used to evaluate every single research project involving human participants that is conducted in Canada or by a Canadian elsewhere involves an amazing and unprecedented centralization of authority and responsibility, which should not be taken lightly. Engaging such a monolithic organism with such numerous and extensive tentacles should require no less than a Royal Commission to undertake - one which is truly representative of the breadth of research and research perspectives that are operative in Canada - in contrast to the essentially internal bureaucratic process that has resulted in the draft Code of March 1996.
The Councils' decision to move ahead in a manner inconsistent with the ethical principles they espouse for others is hypocritical, and hardly the sort of practice that will encourage respect for their limited but significant role in the scientific enterprise. The draft Code they have created is flawed in many respects, most of which would have been rectified had the Councils followed their own ethical dicta regarding informed consent, the necessity of treating the objects of our research and policy with dignity and respect, and the aspiration to settle important policy and research issues in a spirit of egalitarian "partnership" in which the full diversity of views is made an integral part of the process and neither side exploits its power at the expense of the other.
But what to do now? Let us imagine that a researcher had submitted a proposal to his or her REB and had received approval to proceed with the project. But, upon engaging in the research, came to realize that s/he clearly did not anticipate some crucial aspects of the situation, which now made him/her question the ethics of the study. What should the researcher do?
(a) Continue because the project was already approved; or
(b) Put a halt to the study, go back to the drawing board, and reconsider the research on the basis of the new information.
I would hope the answer is as obvious to the reader as it is to me. The same should be true in the current situation; Canada's research community deserves no less.
Menzies, R.J. (1989). Survival of the sanest: Order and disorder in a pre-trial psychiatric clinic. Toronto: University of Toronto Press.
Ogden, R.D. (1994). Euthanasia and assisted suicide in persons with acquired immuno-deficiency syndrome (AIDS) or human immunodeficiency virus (HIV). Master's thesis, School of Criminology, Simon Fraser University.
Palys, T.S. (April, 1988). The Profs and profits picture. Canadian Business, pp. 157-158.
Palys, T.S. (1992). Research decisions: Qualitative and quantitative perspectives. Toronto: Harcourt Brace Jovanovich.
Palys, T.S. (1997). Research decisions: Qualitative and quantitative perspectives. (Second edition). Toronto: Harcourt Brace & Company.
Report of the Consultative Group On Ethics. (1988). Ethics. Ottawa: Ministry of Supply and Services. (Originally published in 1977 by the Canada Council).
Rigakos, G. (1994). The politics of protection: Battered women, protective court orders, and the police in Delta. Master's thesis, School of Criminology, Simon Fraser University.
Rigakos, G. (1995). Constructing the symbolic complainant: Police subculture and the nonenforcement of protection orders for battered women. Violence and Victims, 10(3), 227-247.
Article TCWG Wording Policy Wording 13.3 While a collectivity may be a While a collectivity may be a family, a community or any other family, a community or any group from within the other group from within the researcher's own culture, the policy maker's own culture, the researcher must be aware that policy maker must be aware that the collectivity to be the collectivity, even in researched, even in Canada, may Canada, may have cultural have cultural values and values and institutions institutions different from different from those of the those of the researcher. Under policy maker. Under certain certain circumstances, the circumstances, the collectivity collectivity may also be fairly may also be fairly described as described as a 'captive' or a 'captive' or 'dependent' 'dependent' population; or as a population; or as a group in a group in a relationship where a relationship where a power power differential between group differential between group and and researcher could operate to policy maker could operate to the disadvantage of the group. the disadvantage of the group. 13.4 Treat the host family, community Treat the host family, or collectivity with respect and community or collectivity with dignity. respect and dignity. 13.5 The researcher must seek to The policy maker must seek to protect the members of the protect the members of the collectivity, and the collectivity, and the collectivity itself, from harm. collectivity itself, from harm. 13.6 When undertaking research with a When generating policy relevant family, community or other to a collectivity, the policy collectivity, the researcher may maker may not begin until not begin until permission has permission has been obtained been obtained from the from the appropriate appropriate authorities for that authorities for that collectivity. Furthermore, collectivity. Furthermore, obtaining group and individual obtaining group and individual consent before beginning any consent before beginning any research involving a policy-making involving a collectivity, or its members, collectivity, or its members, must be regarded as a minimum must be regarded as a minimum requirement. requirement. 13.8 It is the obligation of It is the obligation of policy researchers to ensure that makers to ensure that collectivities, and their collectivities, and their individual members, understand individual members, understand that it is legitimate to that it is legitimate to withdraw from the study at any withdraw from the policy time. formulation process, and governance by the policy thereafter, at any time. 13.9 The researcher and the REB have The policy maker has an an obligation to learn about, obligation to learn about, understand and observe all understand and observe all protocols of conduct and protocols of conduct and communication that are communication that are appropriate to the collectivity. appropriate to the collectivity.
Appendix A cont'd 13.11 In proposing research so that it In proposing policy so that it will best meet the needs of a will best meet the needs of a collectivity, the researcher collectivity, the policy maker should ensure that the should ensure that the collectivity has the opportunity collectivity has the to participate in the design of opportunity to participate in the project. the design of the policy. 13.12 The researcher needs to provide The policy maker needs to the collectivity with an provide the collectivity with opportunity to react and respond an opportunity to react and to the findings before the respond to preliminary drafts completion of the final report, of the policy before completion in the final report and in all of the final draft, in the relevant publications that arise final draft and in all relevant from the research. articulations that are made of the policy. 13.13 Where appropriate, the Where appropriate, the policy researcher should provide maker should provide opportunities for research opportunities for training in training to members of the the policy to members of the collectivity as part of the collectivity as part of the research agenda. policy implementation process. 13.14 In conducting research, a When generating policy, policy researcher must always try and makers must always try and uncover the various (and uncover the various (and potentially conflicting) potentially conflicting) viewpoints held by the viewpoints held by the collectivity members regarding collectivity members regarding the research proposal and the the policy proposals and the way it is being conducted. way they might be implemented. 13.15 In principle, research with In principle, the process of collectivities ought to be policy generation with conceptualized and actualized as collectivities ought to be a partnership between the conceptualized and actualized researcher and the collectivity. as a partnership between the policy maker and the collectivity. 13.17 It is incumbent upon the It is incumbent upon the policy researcher to ensure that maker to ensure that differences in cultural differences in cultural understandings are not used to understandings are not used to exploit the collectivity, exploit the collectivity, especially in a cross-cultural especially in a cross-cultural situation. situation. 13.19 All research must be conducted All policy must be generated in in a manner that minimizes both a manner that minimizes both inconvenience to the members of inconvenience to the members of the collectivity, and disruption the collectivity, and of the collectivity. disruption of the collectivity.
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