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: email@example.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)]: A PUBLIC CULTURE FOR GUINEA PIGS 197 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- A PUBLIC CULTURE FOR GUINEA PIGS 199 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). A PUBLIC CULTURE FOR GUINEA PIGS 201 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: 206 SCIENCE AS CULTURE 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 A PUBLIC CULTURE FOR GUINEA PIGS 207 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 208 SCIENCE AS CULTURE 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, firstname.lastname@example.org, 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. h REFERENCES Altman, L. K. (1986) Who Goes First: The Story of Self-experimentation in Medicine. Berkeley: University of California. Banisky, S. (1997) ‘A survivor’s grace’, The Baltimore Sun, 24 August. Birke, L. I. A. (2000) Feminism and the Biological Body. New Brunswick, NJ: Rutgers University Press. Bourdieu, P. (1984) Distinction: A Social Critique of the Judgement of Taste. Cambridge: Harvard University Press. De Certeau, M. (1984) The Practice of Everyday Life. Berkeley: University of California Press. Dumit, J. (1998) ‘Biology is elsewhere: cutting-edge evidence, new social move- ments and illnesses you have to ght to get’, presented at the meeting of the American Anthropological Association, Philadelphia. Epstein, S. (1996) Impure Science: AIDS Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press. Everett, M. C. (2000) ‘Whose genes are they, anyway? Debating genetic privacy in Oregon’, presented at the meeting of the American Anthropological Associ- ation, San Francisco. Fortun, K. (1996) ‘Environment, epidemiology, and the work of culture: alterna- tive strategies’, presented at the meeting of the American Anthropological Association, San Francisco. GPZ (1996–2000) Guinea Pig Zero: A Journal for Human Research Subjects. Philadelphia. Heintz, C. (1987) Medical Ethics. New York: Franklin Watts Press. Helms, R. (1999) Interview by Matthew Weinstein, Philadelphia, PA, 29 March. Hess, D. J. (1994) ‘Alternative cancer research and the construction of national, legal, and scienti c boundaries’, presented at the meeting of the American Anthropological Association, Atlanta, GA. A PUBLIC CULTURE FOR GUINEA PIGS 223 Hess, D. J. (1997) Can Bacteria Cause Cancer?: Alternative Medicine Confronts Big Science. New York: New York University Press. Hogle, L. F. (2000) ‘Claims and disclaimers: whose medical expertise counts?’, presented at the meeting of the American Anthropological Association, San Francisco. Hogshire, J. (1992) Sell Yourself to Science. Port Townsend, WA: Loompanics. Jones, J. H. and Tuskegee Institute (1993) Bad Blood: the Tuskegee Syphilis Experiment, new and expanded edition. New York: Free Press. Katz, J. (1996) ‘The Nuremberg Code and the Nuremberg trial: a reappraisal’, Journal of the American Medical Association, 276(20): 1662–1666. Klawiter, M. (1999) ‘Racing for the cure, walking women, and toxic touring: mapping cultures of action with the Bay Area terrain of breast cancer’, Social Problems, 46(1): 104–126. Lederer, S. E. (1995) Subjected to Science: Human Experimentation in America before the Second World War. Baltimore, MD: Johns Hopkins. Lewontin, R. C. (1999) ‘Forget privacy: Iceland sells citizen’s personal, health, genetic records’, Plain Dealer, 27 January, Cleveland, OH. Martin, E. (1994) Flexible Bodies: Tracking Immunity in American Culture—From the Days of Polio to the Age of AIDS. Boston: Beacon Press. Rader, K. (2000) ‘Making mice: standardizing animals for American biomedical research, 1900–1960’, presented at the History of Science Seminar, University of Minnesota. Scott, J. C. (1985) Weapons of the Weak: Everyday Forms of Peasant Resistance. New Haven: Yale University Press. Scott, J. C. (1990) Domination and the Arts of Resistance: Hidden Transcripts. New Haven: Yale University Press. Stacey, J. (1997) Teratologies: A Cultural Study of Cancer. London, New York: Routledge. Weinstein, M. (forthcoming) ‘Guinea pig pedagogy: critiquing and re-embodying science/education from other standpoints’, in A. Barton and M. Osborne (Eds) Marginal Science. Albany: SUNY. Welsome, E. (1999) The Plutonium Files: America’s Secret Medical Experiments in the Cold War. New York: Dial Press. Willis, P. (1990) Common Culture. Boulder: Westview Press. Zink, S. (forthcoming) ‘ “Maybe we should pay them more”: comments on Grady et al.’, American Journal of Bioethics.
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