A PUBLIC CULTURE FOR GUINEA PIGS US Human Research by lpd48805

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									Science as Culture, Volume 10, Number 2, 2001




A PU BLI C CU LT U RE FOR GU I N EA
PI GS: U S H um a n Re se a rc h Subje c t s
a ft e r t he T usk e ge e St udy
MATTHEW WEINSTEIN

This article explores an emerging culture and politics of ‘voluntary’
human research subjects in the United States. In the cultural studies
and anthropology of science and medicine, we have become used to
the voice of patients challenging and contradicting the voices of
medical and scienti c authority. Generally, however, our research
has been the media which brings these discourses into juxtaposition.
    Rarely have patients organized themselves as a political mass to
contest medical discourse directly. Some exceptions are the cases of
activist patient cultures, which have tended to form around particu-
lar diseases, e.g. cancer, AIDS, Gulf War Syndrome, and environ-
mental illness. These remain ambiguous in their etiology and thus
provide a space for interpretation (cf. Dumit, 1998; Epstein, 1996;
Fortun, 1996; Stacey, 1997).
    In the 1990s a new politics emerged in the United States around
those who participate in science as healthy human subjects or guinea
pigs. In particular these are paid ‘volunteers’ who participate in trials
of new medications or medical procedures.1 Their emerging activism
creates a public culture: what has been personal or private—and in
the case of medical research, even proprietary—is turned into a
public discourse. Part of this discourse attempts to produce a coun-
ter expertise reminiscent of the AIDS activism analysed by Epstein
(1996) and breast cancer activism studied by Klawiter (1999). On
the other hand, as with the AIDS activists, some of this discourse is
a positive embrace of technoscience. However, more is involved than
the relationship with established expertise, e.g. for and against.
Guinea pig public has a more subtle form of politics which empha-
sizes evasion, resistance, and daily practice (Willis, 1990; Scott,
1985, 1990; de Certeau, 1984). In these writings, agency is often
de ned as extracting as much as possible out of adverse circum-


Address correspondence to: Matthew Weinstein, Director of Secondary Education, Macalester College,
1600 Grand Avenue, Saint Paul, MN 55105, USA, E-mail: alemanleft@yahoo.com

0950-5431 print/1470-1189 online/01/020195–29 Ó   2001 Process Press
DOI: 10.1080/09505430120052293
196                                           SCIENCE AS CULTURE



stances without either embracing or directly challenging expertise or
authority.
    The site of this public culture has been a small, informally
produced magazine or ‘zine’ titled Guinea Pig Zero (GPZ), published
by professional guinea pig and anarchist organizer Bob Helms. This
zine has occasioned the networking of human subjects globally. It
has also published counter-histories of medicine and a database of
knowledge about research institutions useful to guinea pigs.2
    This article focuses on its public culture, especially its triple
politics of counter-authority, embrace of medical authority, and
evasion. As such it is less about the actual medical encounter in
which the guinea pig and researcher meet, mediated by technical
staff and technology, and more about the strategies and tactics used
by the guinea pigs to represent themselves to each other and the
medical community as presented in the pages of Helms’ zine (as de
Certeau calls its).
    Note that Helms already sees himself as a lay anthropologist of
his community. Therefore, this paper is not strictly my own analysis,
even though it is structured through categories of interest to me and
is narrated in my voice. To honour Helms’ own research, however,
I frame all of this as an interview, and insist on the importance of
leaving somewhat ambiguous the source of ethnographic authority.
Before analysing this emerging culture, I sketch the meaning and
history of being a human research subject in the United States. I also
examine the venues and content of guinea pig culture before it enters
a public and political space.



j     GU I N EA PI GGI N G
h   Early modern guinea pigging
The need for human subjects in medicine is relatively uncontrover-
sial for medical practitioners. If anything, the adequacy of other
animals as models is where difference arises (Lederer, 1995, p. 59;
Rader, 2000). The centrality of human subjects is discussed in Carl
Heintze’s textbook Medical Ethics, which uses the following example
as both the model and a muted origin story [he presents this as ‘one
of the earliest modern human medical experiments’ (Heintze,
1987, 45)]:
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   On May 14, 1796, [Edward] Jenner scratched a wound into
   the arm of a boy named James Phipps and placed material
   from the cowpox sores in the wound. Phipps promptly con-
   tracted cowpox, a mild infection similar to a much more
   deadly disease called small pox. … [W]hen young Phipps later
   was exposed to small pox, his previous cowpox infection
   prevented him from getting the more serious disease. Jenner’s
   discovery would have been impossible had he been unable to
   experiment ‘in’ the body of James Phipps (pp. 45–46).

    In this narrative, virtue and necessity are combined. On the one
hand, Jenner, as the heroic gure of medical science, legitimates
research in the real saving of lives through his vaccination, and on
the other, the human subject is established as the necessary price for
this necessary knowledge.
    It should also be clear that this narrative extracts both the doctor
and the subject from their broader social milieu and from issues of
power and history. Here medicine is not an institution, but rather the
benevolent acts of individuals. Both subject and doctor, however,
have been, on the whole, part of historically and geographically
speci c populations.
    While the speci c population from which research subjects are
taken has been changed frequently over the last two centuries, it has
always been from the most politically marginal and vulnerable
groups. Over that time, there has been a continuous need to locate
human bodies which, voluntarily or involuntarily, could be milled
into data. These populations have included at various times the
insane, orphans, slaves (prior to the close of the Civil War), prison-
ers, military conscientious objectors, soldiers, medical students, rural
and urban African–Americans, and unsuspecting civilian popula-
tions.
    Prior to World War II, there was no formal code or law in the US
for the ethical treatment of research subjects. At the start of the 20th
century, ‘physicians were reluctant to set forth explicit rules for the
conduct of research with patients, arguing that they would impede
research and undermine trust in the physician’ (Katz, 1996,
p. 1663). Historian Susan Lederer notes that many prominent scien-
tist-physicians argued for informed consent as a standard in the early
part of the century, though for many ‘practicing clinicians … the
198                                           SCIENCE AS CULTURE



patient’s cooperation in medical treatment implied authorization for
research, so long as the research did not compromise the welfare of
the patient’ (Lederer, 1995, p. 100).
     As Katz argues, the adoption of a requirement of informed
consent came about only because of the lobbying of Andrew Ivy, a
doctor and prosecution witness at the Nazi doctor trials in Nurem-
berg. In his testimony, he wanted to cite a concrete code used in the
United States, as a way to establish the moral superiority of the
United States over the Germans in the trial. However, such a code
in fact did not exist until he convinced the American Medical
Association (AMA) to establish one just prior to taking the stand.
These AMA guidelines stated nothing more than that ethics requires
that ‘… the voluntary consent of the person on whom the experiment
is to be performed must be obtained’ (cited in Katz, 1996, p. 1663).
Neither procedures for handling subjects nor supervisory protective
organizations were established. Mostly these guidelines were ig-
nored. The arrogance of medicine was part of a larger mindset
among scienti c and governmental authorities, which saw civilians/
patients as subjects, data—or if nothing else, as expendable in the
new politics of the Cold War. This mindset is illustrated by Carole
Gallagher’s photo-history of the communities surrounding the nu-
clear test sites in the American West.
     The Nuremberg judges adopted what remains the strongest
standard for consent of human research subjects in all research.
Their ruling, the Nuremberg Code, insisted that such consent was
absolute, and that anything which might lead researchers to question
consent (age, mental capacity, civil liberty) should exclude a subject
from experimentation, unlike the AMA ruling. This meant that
prisoners and children were to be unequivocally placed out of
bounds.
     American doctors did not read the Nuremberg Code as applying
to themselves; they saw it as a speci c judgement against an uncivi-
lized country (Germany), extraordinary measures for an extraordi-
nary place and time (Katz, 1996, p. 1665). As a result, after the war,
little attention was paid to consent in the US. For example, no effort
was made to obtain consent, much less an informed consent, in
radiation experiments that were carried out as part of the Manhattan
Project following the Second World War. Plutonium and other
radioactive elements were injected into patients without their knowl-
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edge (Welsome, 1999). When asked about consent, one of the
doctors involved said that subjects never knew, and experiments on
humans only ‘involved getting a needy patient who had a known
disease, or thought it was known’ (p. 94).
    A similar perspective was evident in the Tuskegee experiment, a
longitudinal study of 399 African American men with syphilis. It was
conducted by the Public Health Service starting in the 1930s and ran
until its exposure to the public in 1972 (Jones and Tuskegee Insti-
tute, 1993). Grounded in racist assumptions about biological differ-
ences between African Americans and whites, the study sought to
generate data for comparison with an earlier study of Norwegians
exposed to syphilis carried out in the late 19th century. The
Tuskegee subjects were neither told of their condition nor were they
provided treatment, either when they were rst recruited or later
when penicillin was made available. They were permitted to suffer
and spread the disease without their knowledge.
    Unlike the plutonium study, the Tuskegee experiment was not
classi ed. Results from it were published in medical journals. Fur-
thermore, the study went through numerous reviews over the 1950s
and 1960s with few objections ever being raised. And the director of
the Public Health Service’s division of venereal disease at the time of
the Nuremberg trials, who had considerable oversight of the study,
saw no connection between the experiments on Jewish concentration
camp prisoners and their own research (Jones and Tuskegee Insti-
tute, 1993, pp. 179–180).
    These connections were made only later on. Eventually all the
details, and speci cally the callous and fundamentally racist use and
disregard for the health of the Tuskegee subjects, came to light in
newspaper articles by Jean Heller published starting on 14 July 1972.
In 1973 Senator Edward Kennedy held hearings on human exper-
imentation focusing on the Tuskegee Experiment before the Sub-
committee on Health of the Committee on Labor and Public
Welfare.
    In 1974 the US Congress passed the National Research Act,
which created a commission, the National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Re-
search. Its ndings, published in the Belmont Report in 1979, began
to bring the US in line with the Nuremberg Code. Nuremberg is
200                                            SCIENCE AS CULTURE



cited explicitly as the template for subsequent codes of research
conduct in the Belmont Report.
    The Belmont Report, along with the National Research Act,
created concrete procedures and institutions designed to help protect
research subjects. Research on humans, after Belmont, required
‘independent’ institutional review boards, consisting of people with
both technical and non-technical backgrounds, to assess the risk and
bene ts of research projects involving human subjects. Limitations
were placed on subject populations, institutional oversight, and
federal agencies like the Of ce for the Protection of Research Sub-
jects became part of a new ecology of research on humans which
involved new strategies for nding and reimbursing subjects.
    It should be clear that neither the newspaper articles nor the
hearing alone can account for the sudden sense of responsibility
demonstrated in the Belmont Report. Parallel with this history of
scandal and governmental response is a history of social movements.
As a scandal, the Tuskegee Scandal got its force from the civil rights
movement and the sense of race danger, as symbolized by Martin
Luther King’s assassination, race riots, the activism of the Black
Panthers. This perceived danger was central to the zeitgeist of the
early 1970s in the US.
    If the Belmont Report produced the framework for the current
political economy of human research subjects, these social move-
ments provided the template and early history for subsequent ac-
tivism on the part of guinea pigs. That name and totem was
embraced by the more politicized members of the human research
subject community. As Helms points out, the criticisms of Tuskegee
had an effect only because there was already civil unrest in precisely
those populations (prisoners and African Americans) who had served
as subjects of medical experimentation.



      If there was no civil rights movement the scandal would have
      never gotten any teeth … The government was afraid of major
      riots, so they changed what they were doing. They told the
      doctors to stop playing around. I mean there were major riots
      already happening so they didn’t need any more (Helms,
      1999).
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h   Late-modern guinea pigging
The politics and culture of post-Belmont guinea pigging is my focus
here. I limit my discussion to so-called healthy, professional guinea
pigs. In other words, these people are not participating in a study out
of medical necessity or benevolence. Rather, they use their partici-
pation to gain income.
    The new regulations for research demanded that subjects should
come to the research ‘voluntarily’ as well as ‘informed’ (terms used
in the Belmont Report). Both of these terms must be read as
contested if not controversial. Limits have always been acknowl-
edged within the medical community as to how well informed or
voluntary a subject can truly be.
    Nevertheless, these ethical issues aside, Belmont marked a dra-
matic shift in the practices through which research proceeded.
Rather than consciously targeting vulnerable and convenient popula-
tions, research units advertised for subjects in local newspapers. This
became a practical operationalization of voluntariness, i.e. voluntari-
ness was understood in terms of markets (advertising) and choice in
employment. It is this regime of recruitment that I de ne as late
modern guinea pigging, putting aside whether such economic rela-
tionships in fact are ‘voluntary’.
    For the research laboratories, called by the research subjects
‘units’, the problem after Belmont was the recreation of as stable a
source of subjects as the one researchers had enjoyed prior to the
Belmont Report. A perpetually amateur group would not do. As
Helms, the editor of Guinea Pig Zero, explained

    Try to imagine how much time it would take to ll [beds]
    with all brand new people who had never done it [experi-
    ments] before, because you’ve got to explain. You’ve got to
    take their histories, you don’t have a le on them … and you
    have to explain how it works. You have to watch half of them
    chicken out, cause they don’t know what they’re getting into,
    and half of them are going to pass out … So when they want
    to ll a bed, they don’t want—they would probably not admit
    it but they really want someone they can rely on. Just like any
    employer … They have jobs to do. My blood is just as good as
    an inexperienced guy’s blood, and I’m not going to go and eat
    a damn poppy-seed bagel and get bounced from the study
202                                              SCIENCE AS CULTURE



      [due to drug testing]. Somebody else isn’t going to know
      better, they’re not even going to think of it. So it’s better to
      have regular guinea pigs (Helms, 1999).

   Each hospital or lab, subsequent to Belmont, hired a recruiter
who would advertise (usually in local newspapers or on billboards on
mass transit) and screen for studies, testing for drugs and liver
functioning at a minimum. The units would maintain lists of regular
subjects, and a relationship often developed between the recruiters
and the guinea pigs.3
   Anthropologist Sheldon Zink has identi ed four populations that
participate in studies:

      students, who participate for extra spending money; low
      income unskilled workers, who participate for the small
        nancial remuneration; professional ‘guinea pigs’ who chose
      to participate as a way of maintaining a marginal
      lifestyle … and middle aged, disenfranchised middle class
      adults who participate in research to earn extra money to take
      vacations, pay for their children’s weddings or college edu-
      cation, save for a down payment to buy a home, or build up
      their savings accounts (Zink, forthcoming).

   Other groups, smaller in number or less visible, include medical
personnel and medical and nursing students (Altman, 1986) and
people who are motivated to participate altruistically. None of these
groups include those who participate because they are suffering from
an illness and hope for relief. The vast majority of healthy human
subjects, not surprisingly, are economically marginal, coming from
Zink’s rst three groups. In its marginality, the post-Belmont subject
population resembles earlier ones. Helms described for me his
impressions of who participates in studies,

      You basically have to not be responsible for maintaining rent
      somewhere … or be living very low rent and without much
      stuff. There are exceptions but the usual kind of person who
      does it as the sole income is uh living out of a duffel bag—and
      their home address is a relative’s house. One guy I know he’s
      married with a few kids and he does a lot of studies, and he
      does it pretty much as his only income, but he’s got other—
A PUBLIC CULTURE FOR GUINEA PIGS                                      203



   like scam like things going on—get rich quick schemes and a
   million irons in the re. So he can have a house—I think he
   owns a couple of houses and rents them out or something in
   addition to the studies. So he’s a lot more lively and ambitious
   than a lot of the guys that are doing it as their sole income
   (Helms, 1999).

    The contributors to the zine include students, people involved in
the sex industry, anarchists who may be resisting permanent employ-
ment for political reasons, and members of the zine community
(Dishwasher Pete frequently contributes to the magazine, for in-
stance, and has his own, very well known, zine).
    Over the two decades since guinea pigging’s late modernization
in the United States, the quality and speci cs of the job have
changed. Most of these shifts are related to the consolidation of the
pharmaceutical industry in the 1980s and 1990s. There are now a
few very large units rather than many smaller ones. At the same time,
the number of subjects has increased as the job has become better
known (no doubt the increasing disparity in wealth has also con-
tributed to growth in the guinea pig population). With these changes
has come a reduction in the power of the guinea pigs to individually
control their working conditions.

   In the old days, you could say things like, ‘Oh, Doc, I don’t
   want to drive 5 hours from home to here just to give you an
   extra tube of blood 5 days after the study in the follow up.
   Can I go to my local doctor, and get him to do it? Can you
   play phone tag with this local hospital out where I live?’ and
   he’d say, ‘Yes’. Now he’d say, ‘Forget it, pal’, and it would be
   up front—y’know you have to be here because the companies
   sponsoring these experiments … So certain things are tighter,
   but oh the pay is going down, because of the number of guys
   involved is a lot higher (Helms, 1999).

    Given this consolidation, conditions for the guinea pigs can be
horrendous on top of whatever horrors are involved in the medical
treatment.

   They’re also making bigger units, and there’s over crowding.
   They’re packing the studies one after another, really tight. So
204                                             SCIENCE AS CULTURE



      sometimes we’ll be sleeping on cots, folding cots, except
      during the times when we’re actually dosing, and I got paid an
      extra 25 bucks a day to sleep on an easy chair, a recliner in
      one place. And the place was mobbed, you couldn’t get any
      quiet no matter what time it was. Even in the middle of the
      night it was noisy as hell. It was more than twice the number
      of people that the place was made for. You couldn’t get a hot
      shower, cause there’s too many people showering (Helms,
      1999).

    Contesting these conditions is dif cult. Guinea pigs are too
transient and too vulnerable to organize using traditional labor
relations models. It should be kept in mind that guinea pigs are also
not labor, at least not in a classical Marxist sense of the term. Rather,
guinea pigs are a resource. Helms’s comment above, about knowing
the ‘economy of his own esh’, hints at this meaning. In my
interview with him, he addressed this directly,

      You’re a widget; you’re not a machine; you’re not a tool;
      you’re a specimen—it’s like you’re a board in a lumber yard.
      They sell data. The manufacturing is manufacturing data.
      Data can only be generated from our bodies.

    The small amount of know-how involved in guinea pigging, while
a convenience to the units, does not give guinea pigs enough power,
as things now stand, to bargain over the conditions of their exploi-
tation. The alternative has come in the form of a new self-conscious-
ness among professional guinea pigs, enabled by the publication of
Helms’ zine. This has provided a venue for guinea pigs to speak back
to the units. Before examining this public culture of guinea pigging
I want to explore elements of the lived private culture of the job.


h   Guinea pig identity and culture
One side effect of the new research ecology developed after the
Belmont Report’s conversion of guinea pigging to an economic
relationship was the production of being a research subject as an
occupational identity. Guinea pigging could be imagined as a job and
a way of life. With this change has come a positive embrace of the
term ‘guinea pig’ itself.4 In the rst issue of the zine/journal Robert
A PUBLIC CULTURE FOR GUINEA PIGS                                        205



Helms talks about meeting lepers and the politics of naming them
and himself:
   It was politically incorrect to call them lepers, and all the
   doctors and mucky-mucks would say leprosy victims. The
   people themselves laugh at this and say, ‘Are you joking?
   Look at me!’ (showing you their ngerless hands). ‘I’m a leper
   if there ever was one!’ I think of this again each time some
   nurse calls me a ‘study subject’ or a ‘volunteer’. I bear no
   illusions about the economy of my esh as I wander through
   this meat rack of a world, and so I call myself a guinea pig
   (GPZ #1, 1996, pp. 6–7).
    Compare Helms’ self-identi cation with Tuskegee survivor Her-
man Shaw’s negative response when asked in Senate hearings in the
1970s if he had been a guinea pig, ‘We were all grown men. I think
they used us for guinea hogs’ (Banisky, 1997). Shaw’s denial points
to the radical difference in what it has meant to be a subject before
and after Belmont.
    Prior to Belmont, to be a guinea pig was to be a victim or a pawn.
In the wake of Belmont it became a job complete with an occu-
pational culture. It is to the details of guinea pigging as a cultural
form that I wish to turn, as this culture becomes the context for the
emerging politics of human subjects.
    Guinea pig culture is mostly oral and materializes in brief face-to-
face interactions in the research sites (until Guinea Pig Zero was
published there was no formal way for guinea pigs qua guinea pigs
to communicate off-site). During various phases of the research
process, guinea pigs can have relatively unsupervised conversations
among themselves.
   Almost all of [the contact] is in the studies or at the screenings
   for the studies. And it’s an unsupervised interaction. Nobody
   listens to what we’re saying to each other. It’s totally different
   from other work places where it’s somebody’s job to make
   sure you’re not conspiring; at least when they’re suspecting
   some kind of activity like unionization or even other kinds of
   getting together outside the bosses control (Helms, 1999).
   Some of these contacts will be repeated if the guinea pigs are on
the same study:
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      I’ll be in there with 20 guys, eight of them are in the same
      study as me, so we do all the same schedules. The rest of the
      people are in either one other study or more than one other
      study. And in the morning at 8 o’clock you might have 10
      extra people coming in to dose. They just come in and dose
      and then leave. Depends on the study, I mean there’s a lot of
      outpatient visits involved. So … we see each other in the
      studies, in the research units, and we see each other when
      we’re coming into screen and some places the screening area
      is totally separated from the unit which makes it a different
      equation. They separate them for a reason; they don’t want us
      congregating any more than we have to be (Helms, 1999).
  What the units fear is the sort of exchange of information that
would lead a guinea pig to hop studies.
      I’ll see you, and I’ve done 10 different studies with you, and
      we both know all the same stuff about guinea pigging and all
      the different units. And I’m coming in—I’m in my second day
      of a study—and you come into screen and, ‘Hey, I haven’t
      seen you in a while, what are you up to?’ ‘Oh, uh, not much,
      but there’s a study coming up for 3000 bucks, starts day after
      tomorrow and it starts soon, and you can get into it, and it’s
      down in the other place across town.’ So all of a sudden I’m
      looking to get into that other study, and people do jump from
      one to another, and it totally devastates the people running
      the study, because they lose a fortune, so … but if y’know
      people will go and try to get into the other study, even though
      there’s another drug in them. Maybe they haven’t taken the
      drug yet, so it’s ok, and they have needles and sometimes
      people go from one screening to another because they’re
      trying to like keep all their options open (Helms, 1999).5
   The exchange of job information, however, is a large part of
guinea pig talk. In addition to keeping each other informed about
studies, guinea pigs evaluate the units, share recipes for masking
drug use, and talk about the atrocities that happen in their work
community. Guinea pigs are aware that their line of work disgusts
people. Helms noted,
      Our relatives don’t want us to do it. It’s a disgusting weird
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                        T a ble 1 . Disgustogra m

                              Healthy                      Sick

       See doctors     Considerably of concern           ‘Normal’
       Avoid doctors          ‘Normal’              Slightly of concern



   job. It’s rare that a relative or a loved one will be indifferent.
   With me they know better than to preach to me. I’m going to
   do it until I’m damn well tired of it, and that’s it.
    This disgust is complicated. Guinea pigging violates so many
cultural norms. At the simplest level, guinea pigging violates a
general (and I am over-generalizing here) cultural rule that dictates
that sick people go to doctors and well people avoid doctors. Given
the long historical distrust of medicine, avoiding doctors when sick is
tolerated, but for those same reasons, seeking out doctors and
medicine when one is well is taken as that much more culturally
perverse (see Table 1).
    On top of this disgust is a taboo about exposure to drugs.
Granted, drugs are pervasive in US culture, but they are symbolized
as dangerous, un-natural, and leading to violent or out-of-control
states. Hence the perceived importance of the distinction between
drugs and food supplements.
    Since the guinea pigs are exposed to medicines in a well state,
they are seen as unnecessarily internalizing the un-natural and
dangerous properties of those medicines. Guinea pigging, further-
more, since it is done by people who are economically fragile, is
associated with drug abusing populations.
   You have an image—there’s an image we deal with … of the
   guys coming in and doing it once come in with the same
   stereotype: that the human guinea pig who does it a lot is just
   a loser which is why he’s doing something which that equates
   closely with selling plasma for cheap wine (Helms, 1999).
   This quote however also points to the pride that guinea pigs take
in their work. They see themselves as different than, and a bit
superior to, the plasma donors, indicating that even those who are
the raw materials of medical science form social hierarchies and
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Credit: Bob Helms, Guinea Pig Zero


systems of distinction (Bourdieu, 1984). The imagined grounds for
this distinction is the relative health that guinea pigs must maintain.

      As drugs and heavy liver damage from alcohol go, you can’t
      get into the study if you don’t qualify and those are the
      quali cations. I’ve got normal liver functions and no drugs in
      your system at all … You can be a loser. You can’t be a
      druggy loser (Helms, 1999).

    This is not exactly true. There is a lot of guinea pig lore related
to teas and concoctions that can mask drug use. It is not clear that
such masks can hide liver damage, however, and that may be the
more material grounds for the distinction between the plasma donors
and the guinea pigs.
    A nal reason for disgust has to do with their association with
medicine which is itself seen as disgusting, involving as it must the
crossing of inside of the body to the outside of the body. As Birke
A PUBLIC CULTURE FOR GUINEA PIGS                                     209




Credit: Bob Helms, Guinea Pig Zero


(2000) notes, our culture, including a large part of the cultural
studies of science, sees the body as surface or exterior. As will be
discussed in the next section, the guinea pigs adopt a view more in
line with the medical gaze that pierces the body’s surface.
    Finally, it is important to acknowledge the ways that guinea
pigging crosses the line between patient and employee. The ambi-
guity of the role is understood as important for both the doctors and
the guinea pigs. Helms explains the political advantages of being on
that line.

    You’re sort of in this blurry universe of patient and worker,
    you’re both the patient of the doctor and the worker or
    employee of the doctor. It wouldn’t be any good to just forget
    about the patient part and go entirely into the worker part
    because … workers in America are less empowered than pa-
    tients (Helms, 1999).
210                                           SCIENCE AS CULTURE




Credit: Bob Helms, Guinea Pig Zero


    Speci cally, by not being an employee, guinea pigs do not need to
have their complaints mediated under labor law and labor relations
boards. These would introduce a slower, more formal, and a more
hostile bureaucracy than that offered by the IRB’s and the civil
courts, at least in the eyes of Helms.
    This border-identity, however, also provides doctors with deni-
ability. This was revealed for instance in the case of Hoiyan Nicole
Wan, a 19 year old student at the University of Rochester, who died
in 1996 during a ‘routine’ lung-cell removal procedure from an
overdose of lidocaine (GPZ #2, 1996). The effects of lidocaine are
extremely well known and its dangerous levels are undisputed, so her
death was not of cially related to any experimental portion of the
exercise. The fact that this was all done in an experimental procedure
saved the doctors from any serious professional or legal conse-
quences.6 Using the ambiguity in the other direction, doctors have
invoked the patient side of the relationship to avoid sexual harass-
A PUBLIC CULTURE FOR GUINEA PIGS                                   211




Credit: Kevin Pyle



ment charges, since such charges rely on an employee relationship
(GPZ #4, 1997, p. 27).
    This community—with its ambiguities and the horror it evokes—
remains mostly invisible. This visibility contrasts with the self-con-
sciousness seen in the cultural productions of people with AIDS:
their theater, lm, art, and literature operates at levels from the most
prized and expensive media to radical street theater. Yet on the heels
of those efforts from PWAs (people with AIDS), there has come a
distinct guinea pig public culture.


j   GU I N EA PI G Z ERO
Robert Helms, the editor of Guinea Pig Zero, came to guinea pigging
in the early 1990s. In his rst attempt to get into a study, he was
screened out after fainting while they were drawing blood.
212                                                SCIENCE AS CULTURE



      I passed out, a vasovagal reaction—out like a light, woke up
      a few seconds later and they were very fussy about it. … They
      kept me there all day long, cut me from the study and all
      future studies there. To this day I can’t do a study there
      (Helms, 1999).
    He did not return to guinea pigging until 1995, during which
time he worked as a labor organizer with the Industrial Workers of
the World (IWW), an anarcho-syndicalist labor union. Helms is very
active in the anarchist community in Philadelphia, and much of his
work on guinea pigging has counterparts in his work in that political
community.
      Just when my unemployment was running out and I had all
      the time I needed I just tried it again … And it was an easy
      one it was like the new coating on something like a … pill or
      whatever, over the counter thing. One of the later phases I
      don’t know which phase, phase IV or V, and so there’s no risk
      involved at all, it’s just couch potato money, and uh it was 5
      days long I think, but the way I got into it was just need for
      money and knowing a lot of people who had already done it,
      and then I just kept doing it; I’ve done it over 30 times,
      maybe closer to 35 times or so (Helms, 1999).
    Helms returned to guinea pigging in 1995. The rst issue of
Guinea Pig Zero was published in 1996. The idea of the zine was
inspired by other work-related zines, such as Temp Slave and Dish-
washer (whose editor is a regular contributor to GPZ). Much of the
research skills, the sort of uncovering of plebian life rst developed
in labor and women’s histories, that Helms brought to bear on
guinea pigging he actually developed in France recovering the history
of anarchists.
      I was a classics major in college, I studied Greek and Latin
      and ancient history, but I had very little training in how to
        nd things out like that. It was usually ancient literature I was
      researching, it wasn’t ancient peoples’ lives … So it was a
      different kind of research, but it was also the use of a library
      so it helped … And I had done a little bit of labor history
      looking in, but all this started, all this fanatical research
      started when I was in France and I started to nd the graves
A PUBLIC CULTURE FOR GUINEA PIGS                                       213



   of anarchists. And I came back and I started nd here and all
   these landmarks and stuff, and simultaneously I was getting
   into the research for Guinea Pig Zero (Helms, 1999).
   The initial motivation for the journal was an interest in the
culture rather than the politics of guinea pigging.
   I didn’t think of the politics rst, I thought of the culture rst.
   Because it’s an obscure occupation that … nobody even
   thinks about. Now there are many other obscure occupations
   that have been written about, and this kind of thing can fall
   through the cracks and never be noticed by society at all, but
   it’s there. Anyway, I enjoy historical research … , so I just
   started looking up the history of my own occupation; my own
   sort of occupation and for some people it is an occupation
   (Helms, 1999).
   The anthropological focus of the journal is also stated up front on
the inside cover of GPZ #1 (1996).
   But every guinea pig discovers, after a short time with the
   species, that we constantly tell each other what’s on our
   minds. In fact, we have a little society of our own, with a
   folklore, our own strange humor, special cares, and most
   importantly, a commonality of interest.
    The typical content of the journal includes historic time lines of
key events (mostly attrocities) in guinea pig history; detailed ac-
counts (contemporary and historical) of either experiments or the
lives of guinea pigs; ction often featuring guinea pigs (the animals)
serving as allegories for human guinea pigs; reports by both Helms
and others evaluating different research units; investigative articles
revealing the details of damaging experiments; book and zine re-
views; FDA and other institutional policy analyses; and correspon-
dence from readers.
    It is clear that much of this strives at creating a counter-expertise
to the medical establishment, though Helms went to great lengths to
stress to me that his journal did not deal with science but with
culture. ‘I don’t want it to be about science. This is not about
science; this is about being a guinea pig. It’s totally nonscienti c. It’s
regular human; it’s anthropology.’
214                                               SCIENCE AS CULTURE



    This is, however, somewhat misleading, and it needs to be
understood in its context. What Helms is avoiding is putting himself
forward as a counter medical expert—someone who can speak to the
ef cacy of speci c medical practices, drugs, and other treatments. At
the same time, the journal has to be read as speaking back to science
in other domains. Helms explains, for instance, that he titled the
journal Guinea Pig Zero ‘because it’s unnatural for a guinea pig to let
the scientists know what he’s thinking’ (GPZ #1, 1996, inside cover).
    Unlike patient- or disease-centered social movements like ACT-
UP, CAN-ACT, or many of the feminist cancer coalitions (Klawiter,
1999), Guinea Pig Zero does not produce a counter-discourse on
particular treatments or the relationship between treatment and the
body [e.g. through endorsing some version of holism, see also Stacey
(1997)]. Biomedical conceptions of the body are largely taken for
granted.
    Where a counter-expertise does emerge is over the constitution of
scienti c ethics. The journal clearly values the strong de nition of
ethics presented at Nuremberg (discussed as necessary in GPZ #3,
1996). More fundamentally it envisions scienti c–biomedical ethics
as dialectical and determined through bottom-up actions and
through investigative journalism rather than abstract statements of
principle or procedural entities such as the institutional review
boards established by Belmont. Much of this re ects an anarchist
suspicion of authority in general, and legal and institutional authority
in particular. Ethics here is understood as something that emerges
from the act of placing power in the hands of those most vulnerable
to scienti c institutions and from the contestation over procedures.
Helms notes that GPZ presupposes
      … the idea is to just assume ownership of the job and the
      occupation, so the debate about ethics in human research,
      that’s for us to dictate terms. Like the scientists are on the
      other side of the fence, just like management’s on the other
      side of the fence. The consumer organizations, the consumers
      of the data, they’re all on the other side of the fence. It’s our
      bodies, and our health and safety that’s at stake so we’re going
      to dictate terms (Helms, 1999).
   Journalism, is seen as the vehicle for this ‘debate’. Again, anar-
chist suspicions of formal institutions play large here. There is little
A PUBLIC CULTURE FOR GUINEA PIGS                                     215



legal recourse for patients, on the one hand, especially given that
courts are reluctant to prosecute since experiments are understood to
be risky, and the venues for workers to have their grievances aired,
such as in labor relations boards, are considered by the anarchists to
be slow and complicit with the given order.
   Suppose it were declared that guinea pigs were regular em-
   ployees; say part time employees. Right now it’s paid volun-
   teerism and it’s taxable income and all that stuff, and I tried
   to get a union to represent the guinea pigs … I know it would
   be impossible, but I want to explain the details, if it were a
   more favorable set of laws but the same attitude of the
   government you would have a government that really did not
   want to enforce any kind of rules protecting workers. So, it
   would be just an endless waste of time petitioning different
   agencies and trying to get it to go to court, and it never goes
   to court, and after 5 to 10 years, you get more of the same.
   You get no results (Helms, 1999).
   Journalism, protected by the right of free speech, and the hope of
popular mobilization are the alternatives to sanctioned appeal proce-
dures.
   The venue for protecting the rights of guinea pigs is going to
   be in scandals, exposing abuses … I’ve been … saying since
   couple of years now, investigative journalists have done more
   to protect human subjects by far, universes beyond what the
   government’s done, and that’s the way it’s always been. It’s a
   scandal driven history … It takes a Tuskegee; in New York,
   the kid’s being used as subjects of Prozac studies. You’ve got
   the EZ vaccine in Los Angeles … (Helms, 1999).
    The centrality of scandals in this politics is re ected in the form
and visceral quality of the prose in GPZ. The grotesque and disgust-
ing—and I mean this in a literal, cultural sense, not as a disparaging
phrase for the writing—both expresses the guinea pigs’ proximity to
medicine and biology as well as the realization that evoking shock
through exposing horrors is the very grounds for guinea pig power
and the means for setting the ethical terms of their employment.
    This activist, ground-up vision of bioethics as a dialectical strug-
gle is justi ed largely through a re-narration of medical history. This
216                                            SCIENCE AS CULTURE



retelling, a second domain of counter-expertise, permits subjects to
see themselves as historical actors, thus giving them a sense of the
whole history of human experimentation from a guinea pig stand-
point. Medical histories focus on the emergence of policy (e.g.
through Nuremberg, World Medical Association statements, and
  nally the Belmont Report) and the steady progress in establishing
ethical scienti c procedures. By contrast, the history taught in GPZ
shows an unbroken history of medical abuses and heroic acts by
subjects, including guinea pig strikes, protests, and endurance of
extreme malpractice. Helms even includes medical histories and
horrors from the Renaissance.
    For instance, Helms retells the history of Alexis St. Martin and
Dr. Beaumont (GPZ #6, 1998, p. 6). In the early 19th century, St.
Martin’s stomach was used to determine the chemical nature of
digestion (after his life was saved by Beaumont). In the GPZ version
St. Martin becomes the protagonist, his acts of resistance (running
away from Beaumont at one point) are contextualized, and the
doctor’s ethics questioned (on contrasting accounts of this research
see Weinstein, forthcoming).
    In this way GPZ is a pedagogical tool, through which guinea pigs
learn to renarrate medical history. It also provides a rationale for
guinea pigs to be the nal arbiters of ethical behavior in medical
research. It demonstrates that no number of laws or watchdog
institutions will assure ethical research.
    Helms also has worked to make this history more material by
creating public monuments to guinea pigs. He was involved in
similar sorts of cultural productions within the anarchist community:
working to have houses where key anarchists had lived preserved as
historical markers; producing anarchist tours of Philadelphia; and
arranging to have the ashes of a famous anarchist turned over to the
community. In regards to the guinea pig community this sort of
materializing work has most notably included lobbying the United
States Postal Service to make a stamp of Alexis St. Martin.
    Of course simply retelling guinea pig history within the journal is
part of this materialization. Likewise he notes when important guinea
pigs have been honored, e.g. when the State of Pennsylvania put up
a marker commemorating a group of World War II conscientious
objectors who served as guinea pigs. This was noted with much
fanfare in GPZ (GPZ #5, 1993, p. 45).
A PUBLIC CULTURE FOR GUINEA PIGS                                     217



    Finally, the most controversial counter-expertise provided by the
journal is the evaluation of the research units themselves.7 Helms
asks contributors to analyze the units they frequent for ‘nine no-nos:
(1) payment below $200/day; (2) more than one of ce to deal with;
(3) very bad food; (4) excessive security; (5) mediocre staff skills; (6)
evasive behavior or wording related to informed consent; (7) chang-
ing the dates of a study without paying us for the hassle; (8) extra
visits for procedures that should be handled during the screening
day; (9) the evasion of responsibility when something goes wrong’
(GPZ vol. 1, no. 2, 1996, p. 2).8
    The guinea pigs who le these short reports on the units some-
times take these nine criteria as an outline and respond to each;
others submit more narrative reports about their experiences at
particular units. Most units actually fare pretty well. Of the 18 report
cards issued through issue #7, only two were given unequivocal
negative reviews, and three others were given mixed evaluations.
This is surprising only because these reviews are surrounded by
stories of ‘nightmares’ of the type described in my discussion of
journalism and bioethics.
    While the guinea pigs, through GPZ, contest history, bioethics,
and the quality of treatment they receive, in the domain of the
biomedical body, they do not posit a counter-discourse. As Stacey
(1997) and Klawiter (1999) both observe in the case of cancer, there
are multiple, alternative representations of the body and disease.
These representations include holism, Indian and Chinese body
models, and syncretic systems mixing ‘Eastern’ and ‘Western’ prac-
tices.
    Holism does not emerge as a discourse among the guinea pigs,
however. Nor do alternative practices, with the exception of contrib-
utors suggesting herbal concoctions for masking drug use, which
might lead a guinea pig to be excluded from a study. In fact a kind
of medical grotesque is celebrated. Illustrations of dissected guinea
pigs are placed throughout the journal serving a strictly aesthetic
function.
    The guinea pig stories are lled with vomit, needles, and blood,
even ones that endorse a particular unit. In one rst person account
of testing various drugs at a unit on the west coast of the US,
‘Spanish Fly Guinea Pig’ by Theresa Dulce, there is an entire section
on vomit and nausea (GPZ #6, 1998, p. 24). ‘The drugs were hitting
218                                              SCIENCE AS CULTURE



the boys harder than the girls … I felt gross a few times. Not enough
to tell the staff, or to pull a trash can over to my bedside. No. 7
yacked loudly from the other room one morning.’
    This account is not meant as criticism. In fact, the article ends
with an endorsement: ‘I’d recommend [this unit]’. I would argue
that this represents a biomachismo, in which guinea pigs brag about
the dangers and viscera involved with their work.9 It also represents
an embrace of the biomedical body in as much as such a model
centrally transgresses boundaries of inside and outside, well and sick,
or mechanical and organic (Martin, 1994).
    In addition, the guinea pigs acknowledge explicitly that their
bodies are commodities. This again separates them from those who
often work in alternative and complementary medical movements
(Hess, 1994, 1997; Klawiter, 1999; Stacey, 1997). In one precursor
to GPZ, Jim Hogshire’s, Sell Yourself to Science, the author explicitly
states,
      there is nothing immoral about renting or selling your body.
      The idea that there is something wrong with this is rooted in
      the same tradition as the fantasy that ‘if you work hard
      enough someday the boss will notice you and promote you’.
      In other words, it serves the purposes of those folks who have
      no problem with breaking your back all your life … (p. iii)
    The anti-authoritarian and anti-work values expressed here res-
onate well with the explicitly anarchist politics of Helms. He also
acknowledges, if in tones that suggest resignation, the fundamentally
commodi ed nature of the body in his meditation on the lepers and
the moniker of guinea pig quoted above, when he declares, ‘I bear no
illusions about the economy of my esh as I wander through this
meat rack of a world’ (GPZ #1, 1996, pp. 6–7).
    There is a third level of politics which escapes the dichotomy of
counter-expertise and the over-the-top embrace of the commodi ed,
biomedical body. Throughout the journal are examples and models
of evading authority, living off the system without confronting it, and
otherwise engaging in what de Certeau has called the ‘practices of
everyday life’ (de Certeau, 1984). One such practice, the ‘tactic’, he
summarizes this way
      It is always on the watch for opportunities that must be seized
      ‘on the wing’. Whatever it wins, it does not keep. It must
A PUBLIC CULTURE FOR GUINEA PIGS                                      219



   constantly manipulate events in order to turn them into
   ‘opportunities’. The weak must continually turn to their own
   ends forces alien to them. … Many everyday practices … are
   tactical in character … clever tricks, knowing how to get away
   with things … (p. xix).

   Helms talked about precisely this level of ‘tricks’ when I asked
him about the politics he saw among guinea pigs at research sites.

   I didn’t see anything beyond … scam based solidarity between
   people, but it was normal worker solidarity that happens all
   the time … , [what] some zine people have called ‘stealing
   potential’: just fringe bene ts and giving each other free stuff
   when they come in … People are still swapping recipes for
   cleaning the blood out, golden seal and these other things that
   are always for y’know … to clear out the pot from your blood
   (Helms, 1999).

    Two forms of tactics are presented here: the taking of ‘fringe
bene ts’ and the sharing of schemes that permit one to participate in
a study, even if doing so would ‘skew’ the research. This latter
category is much broader than just sharing means to disguise drugs
in the bloodstream. For instance, in Dulce’s article she describes the
ways that vegetarians would sneak onto studies and then swap food
surreptitiously with carnivore guinea pigs (vegetarians are excluded
from most studies since eating a common diet is one way that
researchers control the experiment and such meals tend to be meat
or sh meals). Other reported domains of evasion include sex on the
site, drinking, and Helms’ own photo-documentation of his guinea
pig exploits.
    Guinea pigging itself, however, has to be seen as a form of
evasion, speci cally of labor and the culture that values jobs that
require mental or physical labor. Helms described guinea pigging to
me as akin to being a widget rather than a machine (i.e. labor), and
as Hogshire’s quote reveals, the passivity of guinea pigging is seen as
a way of avoiding work that requires that employees care against
their will about their work while producing for someone else’s gain,
work arrangements highly valued under capitalism. This inverted
view of labor is highly compatible with an anarchism which rejects
220                                             SCIENCE AS CULTURE



the ideology of ‘meaningful employment’ as a form of capitalist
delusion or perhaps a centralized socialist variant.


j     CON CLU SI ON
Guinea Pig Zero strives to achieve a human subject politics by
creating a public culture of human subjects. This culture includes
history, journalism, art, literature, and, in the form of the unit report
cards, its own science (taken here to mean nothing more than
systematically collected data). It also includes an expanding social
network through links to other zines and political activist groups.
     Through this very self-conscious production of an identity, comes
also an awareness of rights and the need to enter into an ongoing
struggle to defend those rights. The zine participates in this struggle
through original and reprinted investigative journalism. It targets the
bio-ethics establishment; for example, University of Pennsylvania
bioethicist Arthur Caplan is criticized extensively (GPZ #7, 2000,
pp. 10–11). And it does its own evaluation of research units.
     All of this is done through GPZ’s own narration of the history of
medical and scienti c experimentation. Its retelling rejects accounts
of ethical progress or the inherent benevolence of either researchers
or the broader medical, psychological, and scienti c establishments.
It is through this retelling that the guinea pig community justi es the
necessity of its ongoing participation in the determination of ethics
and rights.
     It should be clear that the zine represents the stories and knowl-
edge of only certain segments of the guinea pig population. There are
many venues of research and avenues for being a subject. Consider
the four groups noted earlier: students, unskilled workers, anarchist
or other political guinea pigs, and, more recently, nancially strained
members of the middle class (Zink, forthcoming). Helms tries to
represent all of these groups, but clearly most of the writing comes
from his own community, Zink’s third population, i.e. the guinea
pigs who embrace the counter-establishment ethics of the zine
subculture or the anarchist perspective for which Helms argues.
     Further confounding Helms’ attempt to create a representative
public culture of human research subjects is the changing ecology of
human-based research itself. Things are shifting again. For example,
consent is increasingly being made a routine part of medical proce-
A PUBLIC CULTURE FOR GUINEA PIGS                                                 221



dures. In these cases the consent is generic and follows extracted
blood, tissue, or organ material rather than being tied to a particular
procedure or study (Everett, 2000; Hogle, 2000). In the case of the
genetic database of Iceland’s population being created by Decode
Genetics Inc., consent is a priori presumed and subjects have to
explicitly decline inclusion (Lewontin, 1999).
    In both of these cases the space for guinea pig self-identity is
diffused and, therefore, effectively removed and with it the condi-
tions for the type of sustained and focused counter-discourse exhib-
ited in GPZ. While there will be a continuing need for human
subjects of the type that contribute to the zine, that space may be a
decreasing part of the ecology of human subject research. Ironically,
such a marginalization increases the importance of this venue and its
model of speaking back to research as larger portions of the US and
the global population passively or unwittingly become human re-
search subjects.

h  NOTES
1. A distinction between healthy research subjects and patient subjects is recog-
nized both by the guinea pigs and researchers. According to Helm, Guinea Pig Zero
has its main audience in ‘healthy research subjects’.
2. Contact information: Guinea Pig Zero, P.O. Box 42531, Philadelphia, PA
19101, gpzero@netaxs.com, http://hop.to/guineapigzero.
3. In the US these lists are not shared between units, though in Germany and
France where people across the political spectrum are concerned with medical
abuse in the wake of the Nazi atrocities, national lists are maintained for tighter
control on use and abuse of subjects.
4. According to Helms, the French use ‘test rabbit’, though often people in both
Asia and Europe just use the English ‘guinea pig’.
5. Helms completed this story by talking about how some guinea pigs still had
tape on them when they showed up to these second studies, to the amusement of
the recruiters:
    He’ll still have EKG stickers on their chest—ridiculous. And the re-
    cruiters, they tell me this story, like ‘some guys y’know what they do I
    can’t believe it. They’re standing there telling me they haven’t been to
    another study. They’ve got this tape all over them’. But there’s a certain
    amount of lying to get in, which is mainly about how many studies you’ve
    done recently, how recently you’ve done one.
By convention there is supposed to be a 30-day waiting period between studies.
6. Helms is currently writing an article about the rhetoric of experiments in which
he argues that the language of experimentation is usually evoked to deny culpa-
222                                                     SCIENCE AS CULTURE



bility for the tragic results of ones’ actions while actual experiments are rarely
spoken of as such. The article compares this language as it was used around the
battle of Diep in World War II in which Canadians were massacred years before
the Normandy invasion, in what the British insisted was an experiment. Helms
compares Diep with the destruction of Guernico, in which the Germans experi-
mented with new warfare techniques and bombs, but never admitted that its
actions were almost purely experimental.
7. I say controversial because Helms was sued by one of the units when the
negative report card was reprinted in Harper’s Magazine.
8. The numbering system of GPZ changed after the second issue. The volume
number was dropped and each issue was just given a subsequent number.
9. Jim Hogshire, author of a book on how to get into guinea pigging (published
3 years before GPZ issue 1) entitled Sell Yourself To Science (Hogshire, 1992, p. 3)
states at one point that ‘the true “Human Guinea Pig” ’ is found in phase one
studies, i.e. the studies that directly follow animal testing and are the most
uncertain about the effect on humans.


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