Dilemmas are Good
As Donald Polkinghorne (1983) described the human sciences at the end of an appendix to Methodology for the Human Sciences, “[a]t the broadest level, [they] investigate all of the experiences, activities, constructs, and artifacts that could not exist, or would not ever have existed, if human beings had not existed” (p. 289). This is a broad definition, and while we may think of human science as incorporating the humanities, social sciences, and behavioral sciences in an amalgam, my exposure to systems theory leads me to view it as something more, as possessing emergent properties (which, it must be admitted, could also mean something less), than the sum of its parts (Capra, 1996; Macy, 1995; Morin, 2008). That recognition leads me in a completely different direction from seeking a code of ethics for human science in any of its “component” disciplines, or even, as I suspect many of my peers will do, attempting some form of synthesis of multiple codes of ethics that exist for many of those disciplines.1
I am inclined instead to look at what human science is, how relationships should be constructed between, to use an outdated dichotomy, researchers and their subjects, and to contemplate how ethical behavior should be determined. As an anarchist, I am perhaps too quickly and instinctively suspicious of codes. I would rather have an agreement among equals with the people I am working with, principally meaning those people who would classically, and should not be called “subjects,” as to how we should treat each other. And as I look at what human scientists do, and the history of what human scientists (in their component disciplines) have done, I am seeing such an agreement as exceedingly important. Preconceived notions, whether they take the shape of a “code of ethics” or in some “role model,” prejudice the quest for such an agreement. Instead of dictating or imposing, I need to listen.
I could not, of course, really go back to the beginning of human science or even the beginning of my program in human science in my quest for this understanding, but in the course of writing this essay, I have found myself referring not only to the books and articles with which I began this program, but in some cases copying and reworking text I wrote at that time, for assignments at that time, and published informally on my research journal,2 and I found myself turning, once again, to writing as a method of inquiry (Richardson & St. Pierre, 2008).
This essay, therefore, will not attempt to explicate a single code of ethics or to choose an exemplar, a “role model” as some sort of messiah leading us to a promised land of ethical research, but rather to problematize the “Common Rule” that underlies many institutional efforts to regulate research conduct, to tease out its assumptions, and to explore how those assumptions prejudice an attempt to ethically research the “other.” In this, I focus mostly on indigenous people; for me, they are a convenient proxy for a number of subaltern groups because the materials I happen to have at hand expose some of their well-developed thinking about how research should be conducted, what forms of knowledge are acceptable, what methods are acceptable, and what relationships should exist between, still not softening the dichotomy enough, “researchers” and “participants.” It also happens that as a white male living on stolen land, traded by white people, but stolen from Red (indigenous) people, that I share a debt to the many who have been genocidally displaced and annihilated and who live with that legacy often on the margins of a colonizing society that far from honoring the cooperative traditions it sought to wipe out (Bodley, 2008; Fear-Segal, 2007), allows them to build and run casinos that exalt individual winnings as often the only hope to a materially decent life, both for indigenous people and, all too often, the gamblers themselves. That has to humble me further. In such a condition, who am I to lecture on ethics?
I am also remembering the way that Richard Shapiro teaching a class at California Institute of Integral Studies, entitled “Secular/Post-Secular? Emancipatory Jewish Thought,” in Spring 2011, spoke of justice, as an aspirational end that would never be achieved, but should never be abandoned, and as an end that if ever thought to be achieved, would in fact have been missed entirely. How indeed should I satisfy myself with the pretense that a “code of ethics” has achieved that very end?
So let us begin at what I am choosing as a beginning. The first, most central, and probably most problematic source of ethical standards is the Belmont Report, which itself was inspired by a Nuremberg Report on concentration camp “doctors” who performed so-called “research” that appears to have been more about torture than about science. This was by no means an isolated case and Nazi Germans are far from the only offenders. As horrific as the Tuskegee syphilis experiments were, they comprise a tiny portion of a vast and sickening history of medical “research” in the United States on people of color. An updated version of the Belmont Report standards adopted by these same United States, known as the “Common Rule,” forms the basis for most, if not all, institutional review board reviews in the country (National Science Foundation, n.d.; Plattner, 2003; Robson, 2011; Thomson, Elgin, Hyman, Rubin, & Knight, 2006; Washington, 2006).
At first blush, the “Common Rule” seems benign enough. According to the National Science Foundation (n.d.), “The fundamental principle of human subjects protection is that people should not (in most cases) be involved in research without their informed consent, and that subjects should not incur increased risk of harm from their research involvement, beyond the normal risks inherent in everyday life.” The parenthetical clause in that statement, though worrisome for its possible recklessness in its phrasing, in reality hints at a softening of these standards that both allows for sometimes dubious methods if sufficiently justified and for greater methodological flexibility than my entirely too brief summary suggests. Entirely too briefly, these provisions call 1) for preservation of individual subjects' autonomy, that they should sign an informed consent form that they understand, declaring they have been accurately informed as to the purpose of the research, as to available alternatives to participation (this will be elaborated below), and as to risks and benefits of participation, and that they voluntarily accept those risks; 2) for their privacy and confidentiality to be protected; 3) that they should not be coerced or unduly influenced to participate and that they may withdraw at any time without penalty; 4) that any risks to subjects should be minimized and justified by the benefits of the research; 5) that an adequately representative sample of subjects should be selected; 6) that a properly constituted institutional review board should review any proposed research before it is conducted and have power to demand changes or to veto projects that appear inadequately protective; and 7) that the institution, the institutional review board, and researchers are jointly responsible for conducting research according to these standards. Further, researchers should report any changes in approved projects or any difficulties in protecting the subjects to the IRB (National Institutes of Health Office of Extramural Research, 2011; National Institutes of health Office of Human Research Protections, n.d.).
As brief as it is, such a summary should not pass without notice of its relationship with positivist, quantitative research. First, the language on alternatives, suggesting that participants may be able to find treatment without participating in the research suggests first that such participants have a condition which it is desirable should be treated. It thus invokes the methodology of biomedical experimentation, the method that was abused in concentration camps, with the Tuskegee subjects, and in other “experiments” with people of color. Such a method divides participants—here, the term subjects is appropriate—into experimental groups, comparison groups, and control groups in a controlled setting in which the researcher seeks to limit the number of variables that could influence the income. One might note that as exemplified in the infamous Milgram experiments, this is not a relationship among equals, but an authoritarian relationship with the researcher as dominant. The ideal outcome establishes, disproves, supports, or fails to support one or more hypothesized cause and effect relationships. This is the positivist ideal and however dubiously, it necessarily assumes that results obtained in a laboratory have application outside the laboratory (Mazlish, 2007; Schutt, 2006).
Second, the discourse of representation, indeed that a research project should accurately sample across gender, race, age, and other categories (National Institutes of Health Office of Extramural Research, 2011), invokes the concept of statistical sampling, in which it is held that a sample should accurately represent the population it is drawn from, and thus that results can be generalized back to that population (Howell, 2004; Utts & Heckard, 2004; Yin, 2011). The ethical intent goes beyond this to a quest for justice for affected groups who have too often been omitted from biomedical trials, and seeks to ensure that no group needing a cure of some sort should be excluded from development of that cure (National Institutes of Health Office of Extramural Research). Unfortunately, this discussion also omits Robert Yin's notion of analytic generalizability, which is the form of generalization that qualitative research can do, and which seeks to improve understanding of a carefully defined set of concepts that can be applied across multiple situations with similar conditions (Yin). It thus dichotomously reinforces this sensed relationship between the “Common Rule” and positivist, quantitative research.
This association between the “Common Rule” and positivism is problematic, but before I go further, I should acknowledge a dubious distinction between positivism and post-positivism—Valerie Bentz and Jeremy Shapiro (1998) note that would-be post-positivist researchers are still trained with positivist ideals and it is clear that positivists and post-positivists share numerous values even as they both claim to eschew values (Guba & Lincoln, 2008, p. 260), which as Colin Robson (2011) observes more graciously, both enables numerous ethical abuses and is self-delusional. An example of purported difference is that while positivism assumes a “'real' reality but apprehendible” (Guba & Lincoln, 2008, p. 260), post-positivism is, we are to understand, “more critical, acknowledging that 'reality [is] only imperfectly and probabilistically apprehendible' (Guba & Lincoln, 2008, p. 260)” (Benfell, November 8, 2011).
Both positivism and post-positivism essentially depend upon a correspondence theory of truth that embodies a subject-object relationship (Dowden & Swartz, September 17, 2004; Guba & Lincoln, 2008) and makes no allowance for tradition or for spirituality, making some, notably indigenous, societies appear irrational by refusing to admit evidence those societies consider important; indeed, as Rauna Kuokkanen (2000) put it, even indigenous people being separated from their own cultural heritage in residential schools have been taught “the fragmentation of human knowledge and the distancing of oneself both physically and mentally from the research object” (p. 413). At least as profoundly, human “relationships are not observable phenomena” (Mazlish, 2007, p. 13), which will be especially troubling in community-oriented cultures and in communities that emphasize human relationships rather than, as so often in the individualistic West, design housing arrangements so as to enable and encourage neighbors to ignore each other (McKibben, 2007; Wood, 2004).
Finally, as Bruce Mazlish (2007) observes, “the heart of the human sciences is interpretation, not positivist observations, experiments, verifications and predictions” (p. 25). The reduction of human reality to what is quantifiable leads positivism to miss what is, at least in many research projects, what is most important about humans, meaning that quantitative methods are not as benign as Robson (2011) would have us believe in his advocacy of mixed methodology, but rather that they to some degree produce a misrepresentation which can only be remedied through intensive qualitative work. Worse, what gets lost as institutions and IRBs continue to privilege positivism and quantitative methods, as numerous authors have argued, is too often a claim that many subaltern groups have to justice (Bishop, 2008; Christians, 2008; Denzin, 2008; Foley & Valenzuela, 2008; Greenwood & Levin, 2008; Kincheloe & McLaren, 2008; Ladson-Billings & Donnor, 2008; Lincoln, 2008; Smith, 2008).
In the epistemological domain, white, male, class elitist, heterosexist, imperial, and colonial privilege often operates by asserting the power to claim objectivity and neutrality. Indeed, the owners of such privilege often own the “franchise” on reason and rationality. (Kincheloe & McLaren, 2008, p. 408).
IRBs are problematic even for “mainstream” researchers. A report prepared for the American Association of University Professors, which criticizes IRBs for obstructing academic freedom, observes that apparently no appeal processes have been established at any institution (in the U.S.) for what may be arbitrary or capricious—the AAUP committee chooses the term “heavy handed”—IRB decisions. The report cites a list of “familiar horror stories” which suggest that IRB review is not always a thoughtful consideration of ethical considerations in proposed research but rather appears sometimes to be a mechanical check-off-the-box approach or a capricious process that may be unduly influenced by non-ethical considerations (Thomson, et al., 2006).
The conclusion seemingly must be that while the regulatory agencies that promulgate the “Common Rule” allow for IRB discretion, the exercise of that discretion may be arbitrary. And as Colin Robson (2011) makes even more clear, the ideals listed above do not amount to actual prohibitions on ethically dubious research practices; instead, there are practices which should draw greater scrutiny. In practice, it appears this means that even benign qualitative methods often draw greater scrutiny than even the most dubious quantitative methods. Robson provides a service by fleshing out the “Common Rule” approach, and highlighting a number of practices, too many to enumerate here, that may not be ethical.
I am forced to differ, however, with Robson (2011) when he claims that any illegal behavior or behavior suspected to be illegal must be reported to authorities, regardless of confidentiality agreements. This appears clear-cut when a researcher becomes aware that someone is about to murdered, but would obviously foreclose research with, among others, illegal drugs users or many sex workers who could not, if Robson was correct, be protected from unreasonable risk of disclosure. Several U.S. government agencies—I found the National Institutes of Health (2011), the Centers for Disease Control and Prevention (2011), the National Institute of Justice (2011), and Agency Healthcare Research and Quality (Merewitz, April 16, 2001)—have recognized this dilemma and have statutory authority to protect research subjects at the federal, state, and local levels, enabling just such research. A residual question here is whether such research into illegal or stigmatized conduct or into communities which routinely engage in such conduct requires the blessing—often meaning funding—of a U.S. government agency to be ethical. On the one hand, a researcher acting without such a blessing cannot offer the guarantees of a certificate of confidentiality offered by many of the agencies mentioned above. On the other hand, the government has no exclusive claim on ethical standing.
Another point Robson (2011) makes leads circuitously to our discussion of indigenous views on research. He notes a conflict of interest “where the sponsor of a project may seek to forbid publication of some inconvenient results” (p. 220). The expectation that results can be suppressed seems not to be limited to sponsors. Just this year, editors at four peer-reviewed journals report having received legal warnings against publishing data from a “$11.5-million health study into whether diesel exhaust damages the lungs of miners” (Kean, February 17, 2012). Woods Hole Oceanographic Institute researchers have had to turn over private emails to BP relating to their research on the Deepwater Horizon oil spill and in 2010, the company apparently offered a contract to scientists at a college in Alabama that would have suppressed their data and their findings relating to the spill for three years, possibly long enough to reduce the penalties BP might be required to pay the federal government (Peterson, June 6, 2012). Chris Reddy and Richard Camilli, who had to turn over their emails, reportedly fear that “[i]n future crises, scientists may censor or avoid deliberations, and more importantly, be reluctant to volunteer valuable expertise and technology that emergency responders don’t possess” (quoted in Peterson, June 6, 2012).
More relevant to human scientists, Robson (2011) writes that “Participants . . . may well be concerned with how they appear in the report and whether their interests, individually or collectively, are affected by publication” (p. 496). Robson does not seem to recognize that some of these participants have considerable reason to worry. Much research has justified colonization by casting indigenous and colonized “societ[ies] in a pathological light because they have not developed according to Western norms (Bishop, 2008)” (Benfell, November 21, 2011). Compounding the offense, corresponding notions of inferiority have been taught to colonized children in their own schools (Bishop, 2008; Denzin & Lincoln, 2008; Fear-Segal, 2007; Kuokkanen, 2000; Said, 1994). This is an example of an apparently obvious ethical principle which is too easily generalized and we shall return to it. For now, it is enough to say that Robson would have done better to acknowledge that many communities around the world have had profoundly evil experiences with the research paradigm that underlies the “Common Rule” approach; that one must consider the motivations for any action, such as research suppression, rather than to simply proscribe it; and that some of the conflicts that these communities have with the “Common Rule” approach arise from the duties these communities perceive—I believe justifiably—that researchers have to them.
Unsurprisingly, IRBs, or their counterparts elsewhere in the world, have not always been sympathetic to these considerations. Lynn Frances Lavallée (2009) reports that for research leading to her doctoral degree,
The greatest challenge I had . . . came at the ethical review stage at the university. At the outset, the Ethical Review Board (ERB) took a mainstream approach, questioning my relationship with the community and raising the possibility of a conflict of interest. I was able to satisfy their concerns by referencing community-based literature, specifically Minkler and Wallerstein (2003). A second challenge arose around project funding because I elected to have the funding flow through the Native Canadian Centre as opposed to the university. I pointed out that the funding was part of a community-based research initiative and that the funder supported having funds flow through the community agency. I was able to get support from members of my research committee and the research funder to address these concerns, and, after much effort, both the project and the funding mechanism were approved. (Lavallée, 2009, pp. 26-27)
Lavallée (2009) does not, to my mind, adequately explain why the funding source was such a concern to the ERB, but her approach to the communities was grounded in participatory action research methodology which explicitly requires the very sort of relationship that the ERB initially objected to (Kemmis & McTaggert, 2008), suggesting a bias against participatory action methodology. Having initially objected to this approach, the ERB presumably could have gone on to object to her use of indigenous methodology within that framework, which at least sometimes, perhaps more often than not, departs from a “mainstream approach” in its epistemology—empirical, traditional, and spiritual ways of knowing are all considered valid—and in its ontology, which “accept[s] both the physical and the nonphysical realms as reality. In accepting the nonphysical, one must accept that reality cannot always be quantified” (p. 23). One can suspect that Lavallée's experience could have been much worse, but it is also important to recognize the importance of her approach to the community she worked with:
My point is that if we acknowledge the importance of the decolonization process of Indigenous societies on the way to empowerment and full-self determination, it is also crucial that we reconnect ourselves to our cultural concepts, values and knowledge systems in order to also be self-governing intellectually. Therefore, an "Indigenous paradigm" would be a culturally specific discourse based on Indigenous peoples' premises, values and world view. (Kuokkanen, 2000)
It is not possible for this essay to survey all or even a large number of indigenous views on research, but among the indigenous peoples of Scandinavia (Kuokkanen, 2000), among the people Lavallée (2009) worked with in Ontario, and among indigenous peoples of New Zealand (Bishop, 2008; Smith, 2008), we find a certain similarity of views about epistemology, ontology, and research. There is some evidence that this epistemology and ontology, at least in their outlines, are not uncommon and some researchers have extrapolated from these views to assume that humans in the Paleolithic held similar views (Bodley, 2008; Burroughs, 2008; Oelschlaeger, 1991). Kuokkanen amends this slightly as she advocates an “indigenous paradigm” rooted both in traditional cultural values and, with important qualifications, in the challenge of “various theories related to poststructuralism” (p. 414) to positivism. In the process, she also exposes how embedded ethical concerns are in human science:
For Indigenous peoples, there is a need to go further than poststructuralist or postmodern objectives since, first and foremost, Indigenous peoples cannot remain apolitical in their struggles. This is a criticism that can be leveled against poststructuralism and postmodernism. Even if Indigenous peoples and poststructuralist theorists share similar aspirations, the ultimate objective of Indigenous peoples is, through the deconstruction of the consequences of colonialism, a true self-determination where intellectual self-determination has a significant role. Some feminist theories and practices also aim at social and political changes in a society, yet their approaches often exclude notions of collectivity as well as land rights which are central elements for Indigenous peoples. Second, to a large extent, poststructuralist theories remain within the very framework and forms of knowledge they criticize; that is, they do not exceed some of the fundamental Western world views, value systems or notions of the other (Smith, 1999:43). Third, there is a need for Indigenous peoples to become independent from Western intellectual structures since a significant part of colonialism is being dependent on modes, structures, epistemologies, and approaches of the West. (Kuokkanen, 2000, p. 415)
Several interrelated conclusions follow from this: 1) There are other, non-positivist, well-developed views about research, epistemology, and ontology. 2) Despite a circularity in which positivism claims a monopoly on rationality, and in which rationality is therefore exclusively associated with positivism, positivist ideology that dictates how relationships between researchers and communities should be constructed, what methods are acceptable, and what forms of knowledge are acceptable is by no means universally accepted and should not be presumed to be superior. 3) There are some “subjects” who interpret their condition as “subjects” as within a paradigm that conflates rationality with imperialism as a manifestation of colonization itself and who therefore justifiably insist upon an entirely different research paradigm. 4) There are some researchers working in areas such as feminism and critical race theory as well as those who work with indigenous people who also associate positivism with patriarchy in all the latter's insidious forms and therefore also choose alternative approaches (Bishop, 2008; Denzin & Lincoln, 2008; Kincheloe & McLaren, 2008; Kuokkanen, 2000; Ladson-Billings & Donnor, 2008; Minnich, 2005; Mohanty, 2003; Smith, 2008). Finally, 4) setting aside preconceptions about the validity of various research approaches, indigenous people, like all others, have a right to personal autonomy that is recognized by the “Common Rule” approach and therefore have a right to refuse mainstream approaches (assuming, apparently, the relevant IRB or local equivalent chooses to recognize that right) and an implicit right to demand alternative approaches. In this vein, the Kaupapa Māori express
concern about 1) who is empowered to initiate research, 2) who benefits from or is harmed by the research, 3) whose research is perceived as authentic and who is perceived as authoritative, 4) whose cultural knowledge is privileged or devalued, and 5) who controls all of these choices epistemologically and procedurally and who must be answered to for the choices made. (Benfell, November 21, 2011, but see Bishop, 2008)
In so doing, the Kaupapa Māori are asserting ownership and control at all stages over research that involves their community (Bishop, 2008), and it appears that they also assert a right to hold research products within the community—to suppress research results and data—when wider release may prove harmful to that community. Another reason for such a move, as Kuokkanen (2000) writes of the Sami, is that traditional knowledge may be subject to “cultural appropriation”:
We have to be careful, however, with the distribution of our traditional knowledge so it will not "run away" from us; so that it will not be stolen or appropriated by those who still have better and wider access to publicity and power and who may use it as their own. We have to bear in mind that cultural appropriation (including knowledge) is another form of neocolonialism which continues to exist in our societies (e.g. Kailo and Helander, 1998:4). (Kuokkanen, 2000, p. 420)
Kuokkannen's (2000) references to neocolonialism remind us that in the “traditional,” that is, first half of the twentieth century, “mainstream” paradigm, “the researcher-as-author” was authorized to “represent the subject's story” (Denzin & Lincoln, 2008, p. 21), that is,
The observer went to a foreign setting to study the culture, customs, and habits of another human group. Often this was a group that stood in the way of white settlers. Ethnographic reports of these groups were incorporated into colonizing strategies, ways of controlling the foreign, deviant, or troublesome Other. (Denzin & Lincoln, p. 2)
This observer, this researcher-as-author's account was, of course, more authoritative than any account offered by the indigenous people themselves, after all, colonization depends for its rationalization upon an imagination of the “other” as inferior and needing guidance from “superior” Western civilization, therefore, the colonizer must obviously understand the colonized better than they, the colonized, do themselves (Bishop, 2008; Minnich, 2005; Said, 1994). Not only is this problematic as an almost-certain misrepresentation, but given any awareness of 1) the history that connects “mainstream research” to colonization which undermines the right of indigenous people to personal autonomy as promised by the “Common Rule” and of 2) continued exploitive economic and political practices toward the low income world and much of the high income world (Mohanty, 2003; Roy, 2009; Sernau, 2006) that are anything but affirming of the dignity of human beings promised under the guise of “human rights” as incorporated into international law with the International Covenant on Economic, Social and Cultural Rights (1966) and with the International Covenant on Civil and Political Rights (1966), one might conclude that indigenous people would opt for a change in the relationship as a matter of self-defense.
The prospect that indigenous people should have to defend themselves against researchers should alarm any honest researcher:
Linda Tuhiwai Smith (2008) . . . emphasizes an equality between “researchers” and “participants” with mutual caring, respect for dignity, and an emphasis on face-to-face meetings (p. 130). She points out that traditional Western ethics codes protect individuals but offer communities no voice, enabling researchers to “pick off” individuals “even when a community signals it does not approve of a project” (p. 132). (Benfell, November 21, 2011)
Smith is asking for what should be immediately recognizable as fundamental human rights, universally applicable without prejudice (Office of the High Commissioner for Human Rights, n.d.) and it is ironic that an ethical paradigm, the “Common Rule,” which arose partly in response to horrors perpetrated by the Nazi regime has itself been implicated in, to borrow Kincheloe and McLaren's (2008) phrasing, “white, male, class elitist, heterosexist, imperial, and colonial” oppression. Yet for the foreseeable future, many projects of many human scientists will remain subject to IRB review on “Common Rule” paradigmatic premises and many in academia will continue to view the “Common Rule” paradigm as sufficient.
This will not do. As we have seen, the domain of ethical considerations to which a human scientist is subject also includes epistemological and ontological questions that are both basic to human science itself and inseparable from the mutual respect that a researcher should hold in common with the communities s/he would research with. Human scientists must also consider harm, not just to individuals but to the innumerable communities they may work with. They must consider how ownership and benefit of the research impacts not just individuals but those communities. In a great many respects, these diverse ethical stances may contradict each other, but just as clearly, these conflicts also reach to the core of human science. And because we should not view the involved humans, communities, or contexts as static (Kincheloe and McLaren; Kuokkanen, 2000), the pat answers of a unitary “code of ethics” cannot suffice; rather, human scientists need to sharpen their sense of harm and benefit for individuals and communities and to negotiate ethical issues with all concerned any time they venture into the field. (In adopting this position, I am indeed expressing considerable doubt as to the legitimacy of “covert research,” which functions little differently towards its subjects—some might say its victims—than the traditional first half of the twentieth century mainstream research that legitimated researchers' practices of collusion with colonization by superseding the observed's understandings with their own “authoritative” understandings.) A human scientist needs to embrace these ethical dilemmas as a part of her or his recognition, respect, and compassion for fellow humans.
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