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Chapter Eight: Conclusion
“We are much less Greeks
than we believe. We are neither in the amphitheatre, nor on the stage, but
in the panoptic machine … is it surprising [then] that prisons resemble
factories, schools, barracks, hospitals, which all resemble prisons?”
Michel Foucault, Discipline and Punish: The Birth of the Prison, p.
217, 228
Regulation is, inherently yet relatively, restrictive, cumbersome, and
myopic. Pursuant of “ideal” forms; focused on standardization. One-best-way
absolutism. Bars.
“Every historical period has probably had its particular equivalences of
traditionalists, modernists, critical theorists, and postmodernists, those
who lament the passing of a purer time, those instrumentally building a
future, those concerned with disadvantaged segments and the direction of
the future, and those seeing fragmentation and decay mixed with radical
potential” (Alvesson & Deetz, 1996, p. 193).
The IRB regulatory system has reached and passed any possible point of
diminishing returns, and moved to the creation of detrimental effects. How
important is it that we stop participating in our own subjugation,
marginalization, and domination, in, at least, the IRB system? It appears
that (in this little IRB slice of the world) if we wish to continue to
observe the natural world and report what we see in it (i.e., to
continue with qualitative methods, it is of critical importance to
dismantle major portions of this system, including local “more rigorous”
interpretations of federal rules (see p. 181 and 198). We must re-focus on
“real” concerns that involve “real” and rapidly expanding risks such as
conflicts of interest.
IRB Purpose, and Mine
What are IRBs “really” doing for the benefit of human subjects of
qualitative and survey (non)treatments? My experience (not that much of it
can be mentioned here in any specific way; in lieu, see quote from AAUP,
2001, p. 241 herein.) suggests that local IRBs convolute the process for
researchers, infringe on their rights to conduct free inquiry, and contaminate
the natural world. Further, IRBs are not offering “protections” to human
subjects of these treatments, mostly because none are needed.{253}*
Informed consent, for example, has no bearing when the (qualitative)
researcher and participant are necessarily “being ordinary people” as Sacks
(1970, as compiled by Jefferson, and included in Atkinson & Heritage,
1984) might put it.
The pursuit of process (regulation) has surpassed the pursuit of purpose
(protection). My purpose here is to deconstruct the (many) regulatory
apparatuses via the illumination of the self-regulatory behaviors present.
I believe this is the most expeditious route to deconstruction and eventual
deregulation. Regulators won’t deconstruct themselves; they need our
encouragement and assistance. And, we must first see what it is they
do to us (the SINS) before we will muster much effort to stop it.
Qualitative Research Issues
Long-term as well as immediate effects of both federal and local
regulatory decisions are important to consider. To think about, write
about, and act about. Science is, as is religion, politics (see
Forester, 1989, p. 3-4). Like religion before it, positivistic science
became and both have mostly remained, to use Marx’s words, the opiates of
the intellectual and marketing masses for the past few hundred years.{254}*
“Common” sense may be coming back into vogue (Alvesson & Sköldberg,
2000), and if it is, situations (including regulations) that “seems odd” to
people may begin (or continue) to matter more. Positive connotations of
terms such as “grassroots” and “town hall meetings” are evidence of
this possible regaining of respect for the local, the “common knowledge” or
“common sense.”{255}*
It would appear the programs designed to enhance self-respect (especially
trusting and acting on one’s own knowledge and judgment) might be working
to enhance the social capital of skepticism and dissention. To
demarginalize, de-objectify critics. To embrace and enjoy (rather than only
sometimes tolerate) diversity.
Many investigators, particularly students and faculty with whom I’ve
spoken from 1999 to 2002, have said there is something more interesting
they would explore if they “could get it past the IRB” or they are breaking
the rules occasionally, or circumventing the process in order to do
something of greater interest and importance to them, and, at least
perhaps, to all of us (suggesting for a moment that some findings are
useful!). The “need” for these regulatory processes that control many types
of minimal risk studies is rarely if ever supported. But, it isn’t
questioned in meaningful ways, either. If the need exists, we don’t know
it. Participants need no protection from unobtrusive researchers.
Researchers need protections to their entitlements: they are entitled to
their values, their perspectives, and (most all) their pursuits. But,
according to the rules, researchers are required to alter the normal
experience (the lifeworld, as described by Husserl, Dilthey, Schutz, and
others) of the people being studied (by telling them they are being
studied, and in other ways) even though those people are not at risk in any
significant way or number. Extremely few participants in social scientific
studies are in need of protection at all, as protection already
exists when considering the remedies available in criminal and civil
courts. And for those who are at risk, it is, I argue, the decisions of
researchers that are critical, and not the rules or lack of them.
In explaining to participants that a study is being conducted, the
explanation alters the researcher and the researched, i.e., the
“real world.” Once they are affected, researchers are, simply, no longer
studying the “real” world, but an altered research environment—an
artificial world comparable to those of the social psychological experiment
and the social survey. And it is altered for no good purpose: not
the fear of harming humans, but the fear of harming the rules, the process.
I’m skeptical about changing, affecting, manipulating the natural
environment and referring to the data gathered in that environment as
“empirical” data. This situation is the result of what I have called
“required but unnecessary” regulatory requirements (see p. 36, 48, 185, and
202 herein; also GAO, 2001; AAUP, 2001). Along with every layer of federal
regulation also come the attendant local interpretations, often described as
(virtuously) “more rigorous.”{256}*
The treatments qualitative researchers ask for permission to inflict
include observing people in their natural world, asking people questions in
conversation, or recalling relevant aspects of one’s own life in what might
be called retro-observation, {257}*
reflexive methods (Alvesson & Sköldberg, 2000) and other activities.
This is maybe the central reason for the unmanageability, the
“unregulat-ability” of qualitative research, the lack of a priori
knowledge of what will be data, who might supply it, when the data may
become useful or how long it may remain so (see concerns about IRB rules
requiring the destruction of anthropological and other data in AAUP, 2001),
or even what the point of the studies might ultimately be.
These treatments are at least as innocuous as survey research. However,
quantitative and survey protocols are perhaps more familiar to IRB members,
and meet with less apprehension, resistance, or scrutiny.{258}*
Perhaps IRB members (most of whom demonstrate more familiarity with
quantitative methods than qualitative ones){259}*
are more comfortable with the quantitative researchers standardized,
formulaic, and precise specification of the procedures in step-by-step and
moment-to-moment detail all rendered in an explicit, articulated (if
unmakeable) promise. For example, a researcher’s local experiences,
accurately remembered, reported, and rendered relevant, are not only
adequate for use as data (see Hayano, 1979; Foucault, 1980; Crawford, 1996;
Denzin & Lincoln, 2000), but often highly desirable. And these particular
activities, along with many other qualitative research endeavors, “need” no
regulation. (Of course, having a higher ratio of qualitative researchers on
IRBs would most likely help everyone involved.)
Some of the problems with trying to regulate qualitative research are
apparent in the application form (see application form analysis in Chapter
Six, p. 174-185, herein). For example, the methods in the qualitative
approach are developed (as are the questions) as the process continues.
This “reality” considerably confounds any attempt to describe the study in
advance{260}* When a researcher is looking at, rather than
looking for, it is impossible to be precise in the same way as in a
clinical trial or other hypothesis-driven approach in an application
process. Regulation makes this type of study “undoable” (or the regulation
is undoable, as is the point here) whether it is the intent of
regulators (to be impossible) or not. The processes related to regulation
corrupt “real world” data whether that is acknowledged by regulators and
researchers or not.
Given the rules that have been in place for more than 25 years, I argue
that many “natural” settings have been (historically and continue to
be) “altered” rather than “natural,” and the degree to which this may be
true is largely dependent upon the affiliation (or lack) of the researcher
and the associated IRB regulations or lack of them, and (perhaps most
important) the interpretations of the regulations by local IRBs, i.e.,
what the IRBs required that particular researcher at that particular time
to do that may have altered the natural (“real”) environment. Even though
the treatment may not have changed significantly, if at all, the
environment did (because of the rules), and therefore the results did.
Maybe significantly. Maybe not. These rules have and continue to work
against what are perhaps the least risky forms of research (see also
Geertz, 1988). It doesn’t seem possible that qualitative researchers can
both do adequate work and follow the rules (Geertz, 1988, p. 133,
who speaks of the right to write ethnography being at risk).
Many qualitative methods involve no activity that is of any greater risk
than that found in ordinary everyday life. In many qualitative endeavors,
nothing resembling “treatment” is involved. This, I argue, is the prima
facie case for abdicating the system. Where can there be risk if there
is no treatment?{261}*
And where there is no risk, there should be no IRB involvement by
definition. Regulations may be (legitimately) viewed as required but
unnecessary by many qualitative researchers (and government researchers,
see GAO 2001, p. 6).
Concession, Circumvention, Contamination
Researcher concession. That qualitative research is not
easy to regulate is not the biggest problem. That no one has established
the need for regulation in the first place, and that very few have openly
challenged a system that doesn’t work are bigger problems, in my view.
As the AAUP (2001) suggests, social scientists were co-opted into the
regulatory system “from the beginning,” but how did it happen? Why? And why
is it that some social scientists aren’t? I believe social scientists
opted in themselves, in part, to enhance the “scientificity” of their work,
i.e., to appear more legitimate in scientific terms by succumbing to
the same scrutiny as the positivists. (Somewhat as several Indian tribes
have become “nations” to, perhaps, “appear” more valid, more sovereign.
Also, see Flyvbjerg, 2001 re: the scientificity issue.)
Some individuals (I would argue students are an especially relevant
group in this situation) are susceptible to manipulation, which can lead to
domination by a group or (an automated) structure. Given power by
individuals, driven by (SINS) STRUCTURES, INSTITUTIONALIZATIONS,
NATURALIZATIONS, SIMULATIONS including the anthem that conflict is
negative, and fueled by tendencies toward compliance and obedience,
researchers in the IRB system allow at least two forms of domination, i.e.,
localized “parental” control of the IRB itself, as well as big-picture peer
pressure, i.e., researchers are dominated by the behavior of other
researchers. So, in this case of IRB regulation, what works to
constrain and subordinate researchers may be their own concession, based on
the desire, following Schutz’ thinking, to maintain a “focus on
non-everyday problems” and to take advantage of the “stock of knowledge” as
presented by regulators (what might be called “unacknowledged knowledge”).
Relieving vital risk and responsibility, one can take solace and defense,
if necessary, in “I was just following rules” mentality.
In workplace structures, conflicts are minimized and eliminated with
managerial tactics; (SINS) STRUCTURES, INSTITUTIONALIZATIONS,
NATURALIZATIONS, SIMULATIONS of the “don’t rock the boat,” “be a team
player,” “follow the leader” (even if over the cliff) variety help create
there’s-no-problem-here illusions. Certain SINS are reinforced (notions
that conflict and rebellion are good are rarely among them, even if it is
said that they are welcomed) with doctrines including job enrichment
programs, TQM, organization as family, and dress-for-success formulas,{262}*
and even research methods classes/seminars, when the leaders
advocate/require participation in an unreasonable system, and describe it
as “inevitable” and, simultaneously, unreasonable. These models often
contribute to illusions (i.e., simulations) of well being, development,
progress, happiness, satisfaction, “rightness,” etc. More bars.
“Most members of culted organizations may have choices, but
organizational coercion keeps them from being exercised” (Arnott, 2000, p.
93). Culted employees (or conditioned researchers, I suggest) “have turned
over their right to make decisions” (p. 93; see also Schutz & Luckmann,
1973, who says, “ … the prevailing social stock of knowledge frees every
individual from finding ‘independent’ solutions to broad provinces of
typical everyday problems …” p. 298; see also Adorno, 1989a; Horkheimer
& Adorno, 1944/1972; and Habermas, 1971).
Qualitative researchers, in particular, have conceded too much for too
long. They have conceded so much in fact that they can no longer do their
work under the rules. Perhaps inventing circumventions is somehow better,
easier, involves less conflict, causes less trouble, etc. than casting off
an impotent system. I would agree that in the short term, it is. But not
overall. Eventually the “real” world must be “really” encountered, i.e.,
experienced.
However, in the IRB system, researcher assimilation, in a sense meant by
both Baudrillard and Rand, is nearly complete in that compliance is
held as equal to protection and as virtuous, or at least inevitable.
Compliance, though itself often difficult, remains the path of least
resistance, and the need for regulation is too rarely, nearly never
questioned. There is no whying. Assimilation into the regulatory system seems
inevitable, adding to the likelihood it will be. Baudrillard (1983) makes a
similar case about U.S. colonization, “At the beginning [of the process], a
moment of stupor and amazement before the very possibility of escaping the
universal law of the Gospel. There were two possible responses: either to
admit that this law was not universal, or to exterminate the Indians so as
to remove the evidence. In general, it was enough to convert them, or
simply to discover them, to ensure their slow extermination” (p. 20). So it
goes with thinkers, as with Rand’s “[people] of the mind” (Rand, 1957/1992,
particularly John Galt’s speech, p. 923).
Researcher circumvention. Circumvention, public, private,
and corporate{263}*,
occurs frequently in the face of “required but unnecessary” regulation.
Being required to gain informed consent when employing no treatment
(observations and/or involvement of non-identified [and therefore non-]
participants) is an example of the problem and informal “local” solution, i.e.,
circumvention.
Informed consent provisions require a form that specifies, among other
things, that the subject may withdraw from the research project at any
time. How does this work in research involving participant observation, for
example? And issues of sampling, i.e., people who “wish” to
participate may vary substantially from those who are simply observed. As
Weppner (1977) observes, this threatens the continued existence of much
“street-style” ethnography (p. 41). When Powdermaker (1966, and recalled in
Punch, 1998) was confronted with a lynch mob, was she supposed to ask the
participants to stop the proceedings while she delivered informed consent
forms? Or, worse in my view, was she simply to avoid writing about her
experience? Gaining consent is inappropriate because activity is taking
place that cannot be interrupted. Researchers (especially qualitative ones,
the primary focus of this analysis) may (of necessity, in order to do the
kinds of work they do and preserve the study environment) circumvent the process,
but, much more rarely, the purpose. Even if one doesn’t trust
researchers themselves to do what is “right,” there are already laws
against abusing others (research participants or not). And, there is very
little risk, if any, inherently in observational/survey/interview
methods; even if researchers using these methods wanted to, there is
little they could to do actually harm people.
Contamination of the natural world. In much fieldwork there
seems to be no way around the predicament that informed consent—divulging
one’s identity and research purpose—will “kill many a project stone dead”
(Punch, 1998, p. 171). And if it doesn’t kill the project, as it can be
argued it did in my case and countless others,{264}*
it can drastically skew the data and results. And it causes in my
estimation, a loss of “spirit” for this kind of research. As I have argued,
the study is no longer of the natural world, but of an altered research
environment. Data becomes contaminated, often with socially desirable
behaviors and explanations, accounts and attributions of participants. The
natural world becomes a much more contrived one. IRB requirements so
contaminate data that to gather it would be pointless. It could be likened to
adding a 50 percent margin of error to a quantitative venture, or finding
significance at .0000001.
Even when/if the natural world can be preserved as a place of study,
sometimes (as in my case) researchers are simply regulated out of business,
i.e., the process becomes impossible to accomplish and/or permission
is simply never granted; the application is ignored. “One need not always
be brutally honest, direct, and explicit about one’s research purpose, but
one should not normally engage in disguise. One should not steal documents.
One should not directly lie to people. And, although one may disguise
identity to a certain extent, one should not break promises made to people”
(Punch, 1998, p.172). I ask, how does this differ from “ordinary life”
values? There is no need, indeed no way to regulate these values.
People, including researchers, who have these values use them, and those
who don’t have or use them aren’t affected by rules in the way the rules
were designed to affect them.{265}*
Gans (1982) expresses:
The social scientist attempts
to describe the world as it is, and he must therefore observe people in
their normal, everyday ways. Should he hide his purpose, either by not
telling them of his participant-observation role, or by asking interview
questions which get at more than they seem to on the surface, he does so
because he has no other alternative. If he bares all his research purposes,
he may be denied access to the very society he wants to study. If he
forswears participant-observation and gathers his data solely by
interviewing, he can get only reports of behavior, but not behavior itself.
If he is completely open about his participant-observation or interview
questions, his respondents are likely to hide information from him—not
necessarily by intention—by giving him access not to behavior but to
appearances; not to what people do, but how they would like their doings to
appear publicly. (p. 405){266}*
It is “not ethically necessary, nor methodologically sound to make known
specific hypotheses, background assumptions, or particular areas of
interest” (Van Maanen, 1978, p. 334).{267}*
Further, quantitative researchers aren’t required to reveal their
hypotheses to participants. As a senior American academic at an ASA seminar
on field methods put it bluntly, “You do lie through your teeth” (quoted by
Punch, 1998, p. 173). The process of regulating qualitative non-treatment,
minimal/no risk research must be revealed as the façade (simulation) it is.
Why haven’t we abandoned it before now? SINS.
Too much regulation contributes to another “real” world phenomenon.
Unnecessary yet required rules (somewhat like “fascinating but
unpublishable” manuscripts; see Wax, 1971, p. ix) and processes
create a sort of underground arena of research activity, (what I call) “the
invention of circumvention” techniques. Researchers engaged in fieldwork
often confess to professional misdemeanors, namely the ones mentioned by
Wax (1971, p. 168-170) and Gans (1982, p. 405). Punch (1998) asks “what
sanctions should we impose for these breaches of professional standards?
Should we drum these miscreants out of the profession? That seems a rather
severe punishment for coming clean on their predicaments in the field” (p.
171){268}*. As I asked earlier, what are researchers to do? A
similar situation is explored by Manning, 1978, who discusses situationally
justified actions (i.e., what I call liquid and local) in the
field of policing, this situation being similar to what researchers (and
all of us, I would argue) face in the lifeworld. Regulations will never be
able to account for every situation, and oversight can never be complete.
It must be recognized that people must (and therefore do) decide what to
do. Again, guidelines and shared experiences, i.e.,learning
how to do things is different (and preferable and possible) from acting as
if we can control them.
Abusive institutional interpretations. As Forester (1983)
states:
When organizations or polities
are structured so that their members have no protected recourse to checking
the truth, legitimacy, sincerity, or clarity claims made on them by
established structures of authority and production, we may find conditions
of dogmatism rather than of social learning, tyranny rather than authority,
manipulation rather than cooperation, and distraction rather than
sensitivity. (p. 239-40)
The abyss between federal rules and local institutional interpretations
is often huge. For example, the federal system exempts from the process
much research that institutional interpretations make impossible under
the process (the contamination of the natural world, for example.{269}*
Lengthy application processes even when studies are exempt under
institutional rules on prima facie conditions are an example. Such prima
facie conditions might include requests to interview public officials
or to involve participants in observational situations in which the
identities of the “observed” (somehow labeled “participants” by authors of
the OUIRB handbook, Section 4.4) are not known, and obviously
therefore, cannot be recorded. Institutional interpretations do not always
accommodate federal rules.{270}*
Lawful or not, many IRB rules are created and/or followed by 10s of
organizations, 100s of regulators, 1000s of institutions (IRBs), 10s of
1000s of researchers, and 100s of 1000s of two-legged research participants
for, often, many years (also see p. 72 herein). Regardless of legality or
level or duration of conformity, it seems foolish to ask people to sign a
form that says they are being interviewed, or that they are completing a
survey. These things are obvious. It seems foolish that we as researchers
have to prepare a document that has to be scrutinized by a board, the
members of which have perhaps never participated in, much less conducted,
qualitative research. These requirements seem foolish because they are
foolish. Many rules are inadequate, ill-fitting, and/or irrelevant
when translated from medical science to social science. Some argue that
informed consent procedures are unnecessary even in some clinical trials,
and inconsistent in others (see Truog, Robinson, Randolph, & Morris,
1999; see also GAO, 2001, p. 3, regarding inconsistencies produced at the
federal level).
In my own experience, I have seen the rules constituting the process
restrict the view of the process. This is a very serious matter, and
contrary to informed interpretations of relevant law.{271}*
Legally, administrative rules are based on several tenets. Among them, at
least two are locally relevant. First, administrative rules should not
contradict higher-level law such as state and federal constitutions and
statutes.{272}* It is in no one’s best interest for local IRBs to
restrict researchers’ First Amendment privileges.
A second tenet of administrative law is that people subjected to the law
are to be treated “the same way,” however, similar to the notions of “a
greater good” or “universals in human behavior,” this is an idea with very
low correspondence to conditions in the “real” world. Even in the face of
this system flaw, many regulators persist in attempts to write
“comprehensive” rules (that pretend) to cover any situation (clinical or
social) that might arise, ensuring (in their imagination, perhaps)
that the abstract system is the “same” for any participant. Rules added to
existent ones (ones that were not the “same for all” and that did not
prevent crimes or atrocities) won’t help. Next, nothing can be done
“comprehensively” and attempts to standardize the lifeworld in such a way
is often of no great consequence in meeting the purpose for “comprehensive”
policies, rules, etc. (Attempts to be “comprehensive” similar to looking
for universals in human behavior.) Additionally, as demonstrated in at
least two situations, those with very similar proposals and requests are
not treated “the same way” by the OUIRB (student exemptions and other
situations described herein, including the lack of disposition of my own applications).
This speaks, in my opinion, more to the nature of life than the
(in)competence of the OUIRB (or others). In this regard most administrative
law is set for failure. The extent to which we ignore this failure
is the extent to which these systems work. We first build the bars, and
then put ourselves on the restricted side of them. And then, we just sit
there in Schutzian relief. An Adornological sanctuary.
The American Anthropological Association (2001, Feb 15), in addressing
proposals made by the National Bioethics Advisory Commission in their draft
report (see NBAC, 2001) states that “proposed rule changes ... could
jeopardize the future of anthropological research” (p. 1). A lawyer who
represents academic-research institutions and who sits on the National
Human Research Protections Advisory Committee, said, referring to a
Maryland Court of Appeals decision regarding the use of children in
studies, that all research involves some amount of risk, and that the
court’s decision effectively raised safety requirements for research
involving children to unprecedented heights. “It’s a no-risk standard,” he
said. “That’s certainly farther than they need to go” (quoted in Curry,
2001, Sep 7, p. A32){273}*.
Currently the Bush administration is requiring “agencies to ensure than any
scientific results they release be “capable of being substantially
reproduced” (Brainard, 2001, Sep 28, Daily News; also see description of
Bush’s plan, p. 2-3, herein). This of course is not a goal of many social
science pursuits, and, many researchers who conduct social science research
do not believe it is possible, desirable, or (as in my case) desirable to
believe it is possible (critical theorists and other anti-positivists for example).
In many ways, the regulations don’t fit, i.e., they don’t fulfill
their intended purpose, and the process often produces negative affects
associated with under- and over-regulation in a given context, and is very
prominently featured in the regulation of social science research, and
elsewhere.
IRBs, and regulatory entities generally, operate in a closed fashion
(most IRB meetings are closed, for example, and local IRBs don’t usually
solicit input when considering rule changes, we don’t vote for IRB members,
etc.). These boards issue statements rather than provide explanations, and
they do so according to their own time frame. Local IRBs are in no regulated
way accountable to the people they serve, participants nor researchers.
For example, the OUIRB makes no commitments about how long the approval
process takes (as the University of Texas at Austin does, see p. 134,
herein), the board often answers correspondence aggregately, i.e.,
“facelessly,” without a specific voice, does not demonstrate an attitude of
service to (many) students, and provides no adequate form of appeal (see OU
Policies and Procedures, Section 10, Part 5; see also p. 225, herein).
So, here and now, what are qualitative researchers to do? They are
marginalized and dominated, much like faculty members are by
administrators, doctors by insurance companies, and lots of other “real
world” horrors. I argue that qualitative researchers are a muted group,
particularly students. Muted group theory (Kramarae, 1981) utilizes
interpretivist/interactionist notion, based on Mead’s (1934) theory of
objects, that the power belongs to those who label (and not inconsistent
with Foucault’s ideas).{274}*
Label Power
Quantitative exemption-by-label. Speaking to inconsistency
in IRB regulation, given that much qualitative work takes places before
quantitative instruments are used, i.e., during the development of
instruments, much of the “real” research conducted by quantitative
researchers is not acknowledged as research, and therefore “gets past the
IRB.” This is in spite of the fact that much of what quantitative
researchers are doing (when developing instruments, for example), treats
people as “subjects” in that they are subjected to more than being watched.
This way of treating the developments of instruments constitutes what might
be called an “exemption-by-label.” In the “real” world, human subjects are
involved, but they are not labeled as subjects because the (often very
similar) activities are not labeled as research. Positivists often
do not acknowledge that asking people questions about instrument clarity,
pre-testing survey instruments, etc., is human subjects data. I’m not
advocating these activities should be regulated, but to exempt by
label rather than by treatment is a troublesome inconsistency in the
system, and, of course, evidence to support a reduction of
regulatory interference in these types of work at least as much as it
provides evidence to support an increase in scrutiny.
Because of the lack of clarity in rules, many times researchers in the
newer social sciences have not opted into the system (i.e., they
don’t realize they are “researchers”) and have not been forced to
participate thus far. I have learned in conversations with people that
certain departments doing very similar “treatments” are much less aware of
IRB regulation. Cultural geography, civil engineering, and film studies in
particular have come into my awareness in conversations during the past few
years.{275}* These departments have not labeled the IRB as
necessary or relevant; nor, it appears, has the IRB, in this case, labeled
cultural geography, civil engineering, or film studies as non-compliant.
Student exemption-by-label. With respect to student
exemptions, and just as institutions have opted in to IRB scrutiny for all
subjects, whether the study they are involved in involves federal funds or
not, where is the logic in suspending the process based on whether or not
the researcher is earning course credit, i.e., is a student? Aren’t
all human subjects of research equal in terms of deserving protection?
Don’t researchers have the right to pursue questions of interest without
unreasonable interference? We must acknowledge the dialectic between
participant rights and researcher rights exists, and there are limits to
what rules of any kind can do with respect to that tension.
Assurance-by-label. In terms of providing assurances, we
cannot predict to what uses research will be put. Who can define
“undeserved harm,” “greater than minimal risk,” even “somewhat greater than
minimal risk” and other equally vague terms often used in guidelines{276}*.
For example, when graduate students refer to a dissertation, do they
mention it will be housed in a library, indexed in a variety of places, and
open to all? The more sensitive the activity being studied, the more likely
it is that participants will fear consequences, and the “single most likely
source of harm in social science inquiry (i.e., non-medical) is that
the disclosure of private knowledge can be damaging” (Reiss, 1979, p. 73).
Professional codes (rules) and what is considered sound advice (norms) may
not be at all clear in the field, given that the “real” world is highly
liquid and local. “Real life” and, therefore, the research
environment must accommodate various degrees of impression management,
manipulation, concealment, deception, etc. It is the job of many
qualitative researchers to determine ways these activities operate (along
with other SINS). And hardly can a researcher “explain” to a participant
first what the study is about, and then gather meaningful (unaffected) data
about these same phenomena. To even explain that “research” is being
conducted adds to the level of impression management, enhanced use of
socially desirable (i.e., altered) behaviors and other
“affectations” described. There is no process and no assurance that can
make “real life” conform, no more than we can control the weather or other
aspects of the natural (i.e., “real”) world. We can offer our own
personal assurances to do the best we can. That should not be confused with
absolute assurance, and certainly not with a written form, regardless of
the title of that form, who demands it, or who signs it. It may be the best
we can do, or it may not be, but it is not assurance, regardless.
Questions as labels. Basic political issues, i.e.,
issues that many would advocate should be argued “happily ever after,” are
in this way transformed into (labeled as) technical problem-solving issues,
according to Alvesson and Deetz (1996). For example in the IRB system,
attempts to regulate how people should take care of other people via
standardized handbooks, forms, codes of conduct, etc., are not productive.
Qualitative researchers and many others should be asking “Why am I
doing this?” (i.e., the application procedure, for example) rather
than the technical (non) problem solving activity of asking, “How do
I do this?” The differences in the questions posed serve to frame (à la
Goffman) a bad system as inevitable.
Rules Aren’t Values
In the context of the protection of human subjects, procedural rules do
not replace nor work in lieu of values. As procedural rules are substantially
less salient than values, rules are most often unnecessary (often not even
known). If people have values, these procedural rules don’t matter.
Circumvention of rules may become the norm when the rules are not tied to a
purpose, have no value, cannot be understood, etc. If people don’t have
values, these procedural rules don’t matter, either.{277}*
The system—since its development, through all the debates, changes, chances
to change not taken, and under the (current and past) rules—remains only as
good as the conscience of researchers. (And sometimes rules become tools
used to perpetuate harmful situations. See Solomon, 1985, regarding
Tuskegee syphilis study; see Morley & Shockley-Zalabak, 1991, for discussion
about mature organizations and constraint on innovation.)
Researchers are, as are people in general, usually (even overwhelmingly)
humane and ethical. It seems pointless to ask them to write about their
ethical stance in dozens of nearly identical IRB applications. Ethics are
relatively stable over time, therefore this application activity is a form
of redundantly inappropriate penance (and based on SINS). The system has produced
risk in certain research areas. Especially risky to researchers. To research.
To free inquiry.
Alternatives{278}*
IRB members’ and researchers’ preconceived and perpetuated (SINS-ful)
notions of research and regulation must be altered. “Social structure
should grow from the bottom rather than be enforced from the top” Deetz
(1995, p. 170) concludes. The irrelevant, overly restricting, often
justifiably circumvented, ill-fitting, debilitating system as it relates to
qualitative methods in particular must be decentered and disprivileged,
from within or outside or both. Regulators (bureaucrats and other
cultists), who operate in deeply entrenched systems, may be “unmeltable
ethnics” (Denzin & Lincoln, 2000, p. 68), i.e., maybe they
cannot change. Where that is the case, the system’s dismantling must begin
from the outside.{279}*
The contemporary common-sense credo “It’s easier to beg forgiveness than
ask for permission” implies two pervasive ideas: first, prima facie,
permission is (at least perceived as) difficult to obtain; people
experience some degree of apprehension and/or anxiety about it. Second,
forgiveness is (again, perceived as) easier to obtain, perhaps because the
acts for which one might seek absolution (if not salvation) were great,
pretty good, worked out all right, were reasonable, at least defendable,
somehow understandable. Justifiable. As I have argued, researchers (and
others dominated unnecessarily and unreasonably), circumvent (justifiably) processes,
as distinguished from purposes.
Rather than attempting to fix the process (by abandoning rather large
portions of it in some cases), researchers have tended to avoid making
changes in the rules, as reported in GAO (2001), and DHHS OIG reports (in
particular 2000b).{280}*
In considering the IRB system (and other regulatory entities) we may
regularly see (then quickly look the other way) violations of the process
(rules), for example reports may be late and paperwork backdated, bids may
be split, etc. Much more rarely do we see violations of the purpose
(people). Even more rarely do we look away from harmful situations. This is
supported by the talk surrounding sanctions, i.e., federal sanctions
were (in no way to minimize the exceptions) overwhelmingly for
non-compliance with rules rather than “harming” people (Brainard, 2000, Mar
17; see footnote # 136, p. 117, about U. of Virginia, Duke, and Chicago).
Notably, the sanctions were nearly the same in terms of breadth, depth, and
duration, whether non-compliance with processes was alleged, or a death
reported. In other words, federal regulators don’t seem to consider the
severity of the (sometimes actual) “crime” when assessing punishment, much
like the institutional regulators don’t appear to consider treatment types
when assessing protocols (though I have heard it said that while the OUIRB
makes little distinction between asking questions and injecting drugs, they
do make a Big Deal about the details of questions, occasionally raising
opposition to questions about occupation, marital status, and general
income level on questionnaires). This opens the door to the argument that
the focus of local IRBs is the maintenance of the flow of funding or the
avoidance of litigation long before any issues of human protections. This
is, I argue, in large part to the acknowledgement on the part of regulators
including Koski, Ellis, Grob, and others quoted extensively herein who have
said even though sanctions are issued, rarely is the problem abuse of a
patient (and never in what I’ve learned has an interview or survey
participant claimed damages, certainly substantially more rare than the
already rare abuse of patients in medical trials); it is almost always a
paperwork (i.e., a process) deficiency. If, on the other hand,
abuses were frequent and severe, I do believe IRB members would be focused
on those participant concerns related to the problems (not to imply they
would devise relevant rules, but they would most likely be talking about
the problems as they relate to the abuse as they see it). And once again,
if the government or an IRB defines something as “NO RISK BEYOND THAT FOUND
IN ORDINARY LIFE” then what is it they see themselves “protecting” against?
Alternative One: Blanket Assurance for Researchers
Because there is (virtually) no direct regulatory oversight of the
research process, a blanket assurance system for researchers would more
accurately reflect what is “really” going on in the research environment (i.e.,
perpetuating a less abstract simulation, perhaps).{281}*
Researchers, on their honor, carry out their protocols as approved, or they
don’t. Only the researcher and the participant, in a liquid and local
negotiation, directly oversee (or undersee or see at all) the process.
Researchers, including (if not in particular) students, should
be able to readily explain how they handle issues involving privacy and
confidentiality, and one “blanket” explanation of the researcher’s policy, adequately
ambiguous, is adequate. Even researchers, because of the liquid and local
nature of the world, cannot predict every situation that might occur, and
subsequently ask and gain approval for each situation, each new idea that
emerges along the course of the study. Researchers (those who interact with
participants) must be able to explain their intentions to specific
participants at specific times using their own values as guidance.
Participants are not without their own abilities, specifically the ability
to use their own values in agreeing to participate or not, or to continue
participation, etc. In other words, the notion of “needing to be protected”
is patronizing in many cases. Finally, it must be acknowledged that that
law itself is a liquid and local phenomenon.
Prominent in the federal rules is the requirement that the informed
consent of participants be obtained and a record of that consent
maintained. I support this part of the process. Informed consent may or may
not be a written form. Allowing researchers to develop the consent process
to suit the needs of the particular participants balanced with the needs of
the researcher is the only sensible, “doable” process based on the nature
of life. A blanket “oath” is the best (and only) way to go about this.
Alternative Two: Making Important Distinctions
Researchers must counter the labeling power of regulators, making clear
the distinctions between patients and non-patients (participants), doctors
and researchers, therapy and research, and (see below, Alternative three)
exempt vs. exemption process. Further, these terms must be used as
specifically as possible, and new labels developed as needed. Researchers
themselves have much power to label, and it should be used. If a coalition
of professional organizations{282}*
(such as the AAUP, anthropology groups, oral historians, and others joining
each other) encourages their membership to label their studies “NO RISK”
and “EXEMPT UNDER FEDERAL RULES” regardless of whether an application form
has a space for it or not, is an example. All of these alternatives are
especially important for social scientists, and most of all for qualitative
researchers employing unobtrusive methods.
Alternative Three: Avoid Attempts to Regulate Liquid and Local
Phenomena
We must avoid the pretense that regulators can successfully define for
the world (and for participants in particular) what constitutes protected
and non-protected classes, sensitive and non-sensitive topics, and obtrusive
and unobtrusive research and other phenomena too slippery to standardize.
Whether an organism is a fetus, a child, or a prisoner is generally
discernable (pregnant women are somewhat less so). Researchers,
overwhelmingly, would not have difficulty distinguishing these classes.
However, what an individual may consider sensitive or obtrusive is not
regulate-able.
What exemptions are is not necessarily the problem, but the
interpretation of what can be done in the process of exempting (“the
process of exempting” is an apparent oxymoron, but it is literal in this
situation) is problematic, i.e., it doesn’t work as an exemption.
One may consider just the time to make the application to “real”-ize it is
not an exemption, for example. Exemption, if not left to the fine devices
of the researchers themselves (this system is in lieu of admission that
this is “really” the case, of course), should be post-card simple: Will
participants be identifiable? Any kids? Anybody who’s incarcerated? Any
feti involved? Neither researchers nor regulators should be troubled by
anything more and federal law allows for such a system.
In fact, to do more than “really” exempt, when that is the label used,
produces at least one problem. Both students and their professors new to the
area of regulation may misinterpret the label used with the widespread
meaning of the word “exempt.” That is, student researchers and their
advisors may take the word literally, and this would be acceptable if they
were reading/operating under the federal regulations, but taking the word
“exempt” at face value in local interpretations is not acceptable.
(Students can be thrown into a “research misconduct” inbox and have their
projects, including dissertations, held up until the “problem” is settled,
for example.) If a student or faculty advisor or researcher finds the local
policy unclear, a logical place to seek clarification would be to read the
federal rules on which the local interpretations are based. The federal
exemptions might lead a student or other researcher to conclude they are
exempt and fail to make an application to the local IRB. In this case,
potentially, a very costly mistake. What “seems right” (in this case
following federal law) is “locally” wrong. Federal exemption is not local
exemption is not exemption in the common definition of the word; the word
then becomes a very slippery, if not meaningless, term. And, how are the
readers of these texts to know words don’t mean what they “usually” mean?
Alternative Four: Insist Treatment be the Focus of IRB Consideration
Somewhere along the way, science lost to politics. Faculty lost to
administrators.{283}*
Researchers lost to regulators. Doctors lost to the insurance industry. And
so on and on we see the victories of capitalism. Scientists, doctors,
faculty members, and researchers are required to do things that don’t “seem
right.” Things that don’t “make sense.” (For example, preparing
syllabi before meeting a class, prescribing or failing to prescribe certain
medications or treatments, etc.). These losses are alarming, but not as
alarming as the fact that scientists, doctors, faculty, and researchers are
mostly conceding. There seems to be no “fight” on the part of researchers.
Maybe we just don’t have time. Productivity is winning over possibility
(see Lyotard, 1984, re: performativity). Research is losing to regulation,
via concession, circumvention, and contamination.
Micro-management of minutiae: A reason to live. Debates in
IRBs too often focus on minutiae. "Oftentimes, IRBs get very mired in
consent forms," Jeffrey P. Kahn, director of the Center for Bioethics
at the University of Minnesota-Twin Cities. "That should not be their
main focus. They need to keep their eyes on the prize, which is the
protection of subjects of research.” Federal rules require consent forms to
contain many details, “so that's an easy place to spend time," Kahn
said. "To try to assess risks and benefits is a more difficult and
ongoing challenge'' (as quoted in Brainard, 2000, Mar 17, p. A-31; see also
list serve postings from University of Pittsburgh Medical Center{284}*
and University of Utah’s online handbook which includes a five-page consent
template, and a 25-page assurance document (MPA), the University of Texas
at Austin’s consent template has grown from less than two pages to more
than 10 pages in two years and the Texas MPA from 19 to now 23 pages long;
OUIRB doesn’t have one available online (as of May 2002), but the
University of Oklahoma Health Science Center does (see entry in
bibliography for website); it is 10 pages long (see University of Utah
listings in bibliography, and also University of Texas, University of
Oklahoma, etc.).
The number of research proposals that review boards assess each year has
at least tripled in the past 20 years (in part due to the “inclusionary”
definitions of who “must” participate), while the number of boards has
remained about the same, says Charles R. MacKay, an NIH scientist studying
the effectiveness of review boards for the agency (quoted in Walker, 1996,
Nov 8). The GAO (General Accounting Office) reported in March that in some
cases, panel members spent only one to two minutes on each proposal{285}*
(Walker, 1996, Nov 8). Brainard (2000, Mar 17) concluded the IRB members
operated more like manuscript editors than researchers. This situation also
illustrates Foucault’s ideas about texts as constitutive of organization.
Campbell (1998, Apr 3) quotes Milton Goldberg, president of the Council
on Governmental Relations, representing 140 universities that account for
90 per cent of the federal research grants to academe was quoted, “IRB time
is precious; regulatory refinement of the type suggested here [loosening
rules for expedited reviews of some kinds of research] allows the IRB to
focus more attention on research in which the risks to human subjects are
greatest.” I would agree that there are surely more important matters for
consideration than the wording of a form for a study that should be exempt
under federal rules.
Alternative Five: Passive Rebellion (Researcher Self-exemption)
Engaging in passive rebellion (in this case, ignoring the local IRB
system in favor of following federal rules), and encouraging others to do
so is the kind of dissent that is dis-allowed by managerial domination
(Alvesson & Deetz, 1996; Willmott, 1993, and the works of Marx,
Horkheimer, Adorno, and others). These are the debates that are silenced by
“following rules is best even when rules are bad” (SINSful) mentality
(though I argue it isn’t “really” thinking).{286}*
(Regulators) allowing researchers to exempt themselves (if researchers choose
not to take their entitlement to exemption under federal rules) would
represent a shift on the part of local IRBs from a Theory X to a Theory Y
(McGregor, 1960) stance. Researchers are capable of reading and
interpreting rules; they are capable of exempting themselves from the
process. If or when they have questions about exemption, they can always
choose to go to the IRB for clarification (making IRB “really” useful).
Many federal government agencies (including the FDA and NIH) seem to agree,
saying that IRB time is precious and should focus more attention on
research involving the greatest risks to humans (see Campbell, 1998, Apr 3,
ACHRE, 1995). Researchers conducting no-harm studies should for the benefit
of the researchers and regulators, (and “no-harm” being what it is, the
regulated, too) should be exempted from the application process. The
American Political Science Association (APSA, 2001, Feb 14) states
“expedited reviews [are found] to be expeditious in name only” and that “to
insist that [research posing no threat to participants] should be subject
to even administrative review unnecessarily burdens both investigators and
the review process” (p. 2).
A blanket assurance document from the researcher could certainly include
a commitment that informed consent will be obtained and records of it
maintained (this is also reasonable for the researcher’s own self
interest), that the researcher would comply with all federal and state laws
as they pertain to the treatment of others. If the researcher is in doubt
as to whether a class of people is protected, or whether an issue is
considered sensitive (although, as I have argued this can only be decided
locally, by the person actually answering the questions, or refusing to)
the researcher can make a formal request for a ruling (interpretation) to
the local IRB (and rendering another benefit: IRB members can have a focus
on more substantive protection issues, thereby better serving researchers
and the researched). Questions such as treatment and class of participants
does not require a lengthy application for the researchers, nor any review
on the part of the IRB. Further, a (truly expedited) process would also
reduce the tension between what the local IRB typically considers
“expedited” and “exempt” to mean, and what researchers consider the
meanings to be. Further, the long stream of applications could be greatly
reduced if the researchers were “really” exempted, the provisions for which
are already in place at the federal level (OHRP Human Subjects Policy
specifically states institutions may review studies which are
exempted under federal provisions, but that the review process is not
required. See http://ohrp.osophs.dhhs.gov/humansubjects/guidance/hsdc95-02.htm,
accessed May 25, 2002. Also see Campbell, 1997, Oct 24, for an example).
Additionally and significantly, the “need” for this regulation has not
been established. The process is debilitating in the rather obvious ways
just mentioned, i.e., burdening both regulators and researchers, as
mentioned, by contributing to self-censorship of ideas and draining the
energy from researchers. Not just the physical energy the process requires,
but the system drains enthusiasm from researchers. Most seem to agree the
process is not needed, yet we allow it to persist.
It is important to point out that everyone was exempt until about
25 years ago (with the passing of the National Research Act in 1974). And,
the rules that were put into place in the 1970s were limited in scope.
These rules were only expanded to include nearly everyone in 1991,
barely more than a decade ago. And it is also important to note that before
the rules were put into place, the biggest atrocities by far were
perpetuated by researchers working for the federal government (see ACHRE,
1995). This “inclusionary” trend (now invasionary) on the part of
regulators does not work and is not needed.
Miscellaneous and Mostly Missed Opportunities to Address “Real” Needs
The following ideas may be useful attempts to change the system. First,
a registry of projects that are exempted might be useful to universities,
for statistical purposes and decision and labeling practices. Next, local
IRBs might dismantle portions of their oversight mechanisms that are
unneeded in order to invest in re-directing efforts to situations involving
risk to participants such as conflicts of interest, as mentioned. And, IRBs
might become more concerned with other “problems” such as hammering out
policies to protect researchers who (boldly) report findings that anger
drug companies or other researchers, etc. (see Blumenstyk, 1999, Apr 9).
There are pressing issues (perhaps), but these are not the issues consuming
the energy of the system.
Finally
I advocate these alternatives, and want to make one more point about the
centrality of treatment in regulation. As stated, if there is no treatment,
there “needs to be” no regulation. The language here is important, i.e.,
there is a difference between “regulation is not needed” and “there needs
to be no regulation.” Government, including institutional IRBs, is
obligated to create the least restrictive environments rather than the most
invasive and impotent policies.
Social Darwinists feel government should intervene only when necessary
to remove barriers that limit laissez-faire practices. Progressives
on the other hand, hold that government should accommodate—ideologically,
legally, and financially—the pursuit of social progress (Hamilton, 1998).
These ideas are apparent in current IRB regulatory debates, and
progressives are ahead in defining what the IRB system of regulation
“should” be doing. The (SINS) STRUCTURES, INSTITUTIONALIZATIONS,
NATURALIZATIONS, SIMULATIONS of positivistic, progressive dogma are
operating, demonstrated by researchers’ self-censoring, conforming,
compromising convolution of their programs of research and their rights to
free academic inquiry. These compromises may be much more severe and costly
than the researchers wish to or even can acknowledge. Many, apparently,
don’t see the bars.
The pretense of value-free inquiry for the human disciplines is over,
and researchers now struggle to develop situational and transsituational
ethics that apply to any given research act, or across similar acts. This doesn’t
“standardize” the system, though; ethics can only be applied in more
limited ways than (perhaps) we wish, i.e., we might be able to
“bridge” across a farm pond, but not the Pacific. We must make our
expectations more realistic. Neither regulators nor regulations are suited
for or to this task. Researchers themselves, in conjunction with their
participants, are the most qualified—morally, intellectually, politically,
and practically—to decide exactly what to do in a particular
situation.
Who could be opposed to reducing oppression? (Or apple pie, moms, or
libraries?) Who would oppose lessening the workload on both IRB members and
researchers? Being able to devote more time (researchers, professors, and
regulators) to the consideration of protection issues surrounding research
that carries greater risks to humans?
Maybe qualitative researchers themselves (as mentioned earlier) have
concerns about how “scientific” their work “appears” to be. I argue that
abandoning an impotent IRB system does not lessen the scientific nature of
qualitative research. If anything, it works to energize the field,
currently demoralized by watching free inquiry going the way of (dripping
into the same sewer as) academic freedom and rights to intellectual
property{287}*.
It appears promises born during The Enlightenment and continued during
the reign of positivism just haven’t been kept. There is plenty that
“positivism” can’t do. Absolutism and standardization are flawed concepts. SINS-ful
perpetuation of these regulations and practices obscure important
alternatives and silence important debates (for example, use of the
term “radical” when terms such as “practical” or “reasonable” are
at least as appropriate).
Developments in medical science during the past 30 years are nothing
short of amazing, yet many diseases remain. Life goes on; death goes on.
There is plenty regulators can’t do; and even more they shouldn’t attempt.
And, plenty that researchers shouldn’t allow them to attempt.
We have become more diverse in the way we study human behavior. To
maintain a “real” qualitative/quantitative dichotomy is no longer, if it
ever was, reasonable.{288}*
The art is matching the right method with the right question rather than
determining, with an absolutist, dogmatic, hegemonic mentality what the
right method is. Questions should lead the researcher, rather than a
philosophical allegiance to a way of answering (or as in the present study,
describing and whying).
The case is similar for regulation. Matching the right regulation with
the right treatment (the right risk), speaks to the purpose for
regulation, rather than declaring The Process, entrenching it, and
maintaining it, all the while begging the questions “Who is being harmed?”
and “Where is the need?” “What is the point of this?” “HOW CAN THIS
BE?”
As mentioned elsewhere, in the world of regulation eventually almost all
parties to a particular regulatory system will admit it contains ambiguities
and absurdities. That we have become conditioned to accept this as
“natural” or “the best we can do” is a manifestation, as described, of
(SINS) STRUCTURES, INSTITUTIONALIZATIONS, NATURALIZATIONS, SIMULATIONS.
Sometimes, regulators should do (and “really” can do) nothing. I support
acknowledging rather than ignoring the limitations of rules and rule
makers.
Values guide rather than rules; humanity is more basic than is
compliance. The local situation, i.e., the treatment, the topic, the
situation, and the “needs” of the study, and a researcher’s own values are
parts of the formula. Generalized, and thereby often irrelevant, rules are
numerators totaling zero. And, we know the effect of that on denominators.
Nothing remains nothing.
The values of research participants should be acknowledged, as well.
Research participation in the past may have been more altruistic. Many
participants were willing to participate in studies that might benefit
others, even when the potential benefit for them personally was negligible
or nil. And, that might be true today (see CNN.com, 2002, May 26), except
participants aren’t often given that chance. Contemporary (local) clinical
research is marketed, packaged, spun. Participants, particularly sick ones
(because medicine is where the money is), are taunted with “potential
treatment benefits” and “hopeful preliminary results.” And of course,
before results can be produced and sold (published), patients (or healthy
participants) must be found and convinced. This spin creates further
ambiguity in the therapy-research dialectic, and contributes more to
“spoiling the field” than any contribution a qualitative researcher could
muster. These are concerns that should be the focus of IRB attention.{289}*
More and more frequently doctors own stock in companies that are
“interested” in the scientific data. In earlier times, we perhaps had
over-zealous doctors (or more precisely, research doctors) to fear.
Now we have greedy, over-zealous research doctors to fear. Medical journals
are in a similar predicament, the debate presented in a variety of media
and especially prominent in the past decade.
Interview or survey participation will never be as risky as giving a
person a drug or installing a medical device. The line between therapy and
research conflict will never be as convoluted for interview and survey
participants. How-to questions about the IRB application process remain,
often asked by researchers in “minimal,” “no treatment,” and/or “no risk”
situations (in methods classes and on user lists, for example). But more
important by far, yet too rarely asked, are the questions about why.
Difficult but necessary versus required but unnecessary.
Changing systems is difficult, but desirable, (and for certain kinds of
minimal risk research) necessary. Opposition to existing structures occurs,
according to Foucault (1980), not through assumption of the role of the
universal intellectual but through that of the specific intellectual.
(Earning respect on one’s own terms for example, or the demonstration of
one person making a difference, of being the one who “gets the cheese;” see
footnote # 292, p. 293.) Foucault (1980) describes “specific intellectuals”
as ordinary people who understand their circumstances and have the ability
to express themselves independently of the “universal theorizing
intellectual” (a “life is local and liquid” perspective). “Not in the
modality of the ‘universal,’ the ‘exemplary,’ and the
‘just-and-true-for-all,’ rather within specific sectors, at the precise
points where their own conditions of life or work situate them” (p. 126).
We are too often discouraged from engaging in selective ethics, situational
leadership, anecdotal evidence, gut feelings, even merit raises, seeming to
prefer dogma to thought. Why? In our simulation, it is easier. We’ve made
it “safer” to go along. Why? Even where we see the simulation, it is, sadly
but evidently, more acceptable than change for most. Apathy wins.
(SINS) STRUCTURES, INSTITUTIONALIZATIONS, NATURALIZATIONS, SIMULATIONS
related to the belief that interpretation is not scientific, and that
leaving things to people’s own judgment is bad or risky, and other “matters
of subjectivity” are too often demonized, one of several somewhat obvious
SINS of positivism and Taylorism. This demonizes humans (at least doubts
them, a priori, yet we give trust, a priori and in perpetuity
it seems, to rules, systems, and officials). Disturbingly, during manual
recounts of ballots in Florida in 2000, strong insinuations were made that
machines were more reliable, more accurate, and more neutral{290}*
than the humans making and operating them, for example.
Foucault (1980) says this specificity is the level at which criminals
challenge prison conditions, welfare workers and clients seek to change the
bureaucracy, consumers organize against corporations, and, I would add, the
regulated challenge the regulators, faculty challenge administrators,
doctors challenge insurance companies, people (individuals) challenge
(local) (SINS) STRUCTURES, INSTITUTIONALIZATIONS, NATURALIZATIONS,
SIMULATIONS. Whying should become more prominent in every discourse,
according to my dogma.
I do not subscribe to the notion that something called “the
greater good” exists or that standardization is possible or desirable
(Nietzsche, 1968). Regulatory processes, which are purported to operate in
(even ensure in the vernacular of some) the “greater good” cannot.
Regulations might have a tendency to work somewhat for
some people sometimes. To acknowledge this is not nihilistic,
rather it is a prerequisite to better regulation.{291}*
It might be at this moment in a dissertation that an “Ideas for future
study” section “should be” forthcoming. However, I feel in this, and
similar cases of qualitative research, that it is inappropriately risky to
do so. It might be later said, given the local interpretation of federal
rules, that I gathered data in a premeditated fashion (via living and
talking about issues relevant to that life) rather “authentically”
recalling “data.”
No matter how many times we may say it, write it, read it, or hear it,
most of the time regulatory systems are not “the best we can do.” But they
will remain “all that we have” until we acknowledge we don’t want (to
tolerate) what we have anymore. And that acknowledgement will only be the
beginning of deconstructing the IRB system.{292}*
“What can we do?” should not, in this case, be asked rhetorically.
It is time to realize the “games of power” are, or have already become,
“states of domination” (Foucault, 1988, as quoted in Hindess, 1996, p. 99).
There has been too a long period of contortional, conformiating
compliatorianism. It is now time for, at the least, some new definitions.
Perhaps a new dictionary will be next.
Who will be the Hundredth Monkey (Schell, 1982)? At what point will
those for whom systems do not work stop contributing to the “requisite
level of mass loyalty” to those systems (Habermas, 1975)? When will we
openly, publicly, recognize the legitimation crisis in the regulation
described here? When will we begin to act in public ways to change rather
than conform to bad policy?
If we keep quiet about what is wrong, we are part of what is wrong.
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