Fragile Castles - The Paradox of Research Politics, Scientific Progress, And the Mutation of Medical...

IMAN ROUSHDY-HAMMADY

FRAGILE CASTLES: THE PARADOX OF RESEARCHPOLITICS, SCIENTIFIC PROGRESS, AND THE MUTATION

OF MEDICAL KNOWLEDGE

ABSTRACT. This paper is based on fieldwork done from 1996–1999 in different loca-tions among village communities from Central Anatolia afflicted with the deadly malig-nancy of mesothelioma. Medical research has long established the relationship betweenmesothelioma and the environment; yet in earlier work correlations deduced through mygenealogies provide evidence of a possible genetic cofactor causing these cancer deaths.This paper illustrates how medical research becomes an arena for local and global politicalinterests and how the disruption of the doctor–cancer patient relationship impedes medicalresearch. Methods include illness and clinical narratives, kinship charts and pedigrees, andobservation of involved doctors and patients in multiple sites and geographical locations.Under focus are the anthropologist’s involvement in global biomedical research and herinterconnectedness with its political events.

KEY WORDS: cancer, doctor–cancer patient relationship, Europe, local–global researchpolitics, personal experience and anthropologist’s subjectivity, Turkey, United States

This paper explores the effects of research politics on the process of scientificdiscoveries in the field of cancer research. It is told from the perspective of theanthropologist, who was not only carrying out ethnographic research, but alsoparticipating in medical field research led by Turkish researchers, and involvedin the international exchange among collaborating scientists from Europe andthe United States with Turkish scientists. Using the anthropologist’s personalexperience and narrative, amalgamated with interlacing research methods thatinclude cancer and clinical narratives, kinship analysis to construct genealogies,extensive participant and structured observation, this work addresses a complexresearch population composed of villagers at risk, patients, doctors, and local andinternational researchers. These diverse pockets of research populations are studiedin a multiregional context that includes Turkey, Europe, and the United States,and in multiple field sites that include villages, urban centers and correspondingclinical settings in Turkey and Europe, and major research institutions locally andglobally.

This work depicts a particular period of time in the history of cancer researchin two villages, KK and TK,1 in the Nevsehir province in Central Anatolia inTurkey. By the time I started my research among these communities in Turkeyand in Europe in the second half of the 1990s, the environmental explanation forthe high prevalence of mesothelioma in these Anatolian villages (the presence of

Culture, Medicine and Psychiatry 28: 341–367, 2004.©C 2004 Springer Science+Business Media, Inc.

342 I. ROUSHDY-HAMMADY

carcinogenic erionite in underground deposits, airborne dust, and stone used toconstruct buildings) was well-established in the medical literature, thanks to theenormous efforts of Dr. First Discoverer. Nevertheless, studying the mesotheliomaquestion in Turkey lead me to believe in the possibility of a genetic susceptibilitycofactor that may contribute to the fatality of this disease. Using anthropologicalresearch methods, I constructed genealogies based on precise kinship data, fromwhich biostatistical inferences were made to support my hypothesis in interna-tional medical circles (Roushdy-Hammady et al. 2001). My very presence andmy research were tangled in a complex web of research politics and intricatedoctor–cancer patient relationships. This paper addresses aspects of these politics,highlighting how they affect the progress of scientific research. The examplespresented are meant to reflect the contemporary workings of these politics in theglobal bioresearch industry.

THE GIFT

Should the physician see himself as ascientist or a helper?

(Liek as cited in Hahn 1991:26)

In January of 1998 I was in Dr. Chest Diseases’ clinic in a highly respectedmedical institution in Turkey that here I call The Medical Citadel, when a man—avillager—came in. After talking to Dr. Chest Diseases, his eyelids were cast downin great deference as he stretched out his hand with a medium sized plastic bag.Dr. Chest Diseases had to show dignity by expressing reluctance to accept rightaway, as is the custom among most Turks, but eventually, he, too, stretched hishand to take the gift.

Both of them stepped out of the office, and then Dr. Chest Diseases was readyto wrap up for the day. He looked burdened:

Iman, what would you do in this situation? . . . In Turkey, patients have the habit of givinggifts to doctors . . . either to thank them, or, more often, to get special attention. . . . Thougha doctor is likely to treat the patient well, regardless of the gift, he [or she] . . . has to accept[the gift]. . . . Now this patient gave me this shirt, and I feel bad taking it. This patient hasmesothelioma. . . . [He will live] no more than three months.

On our way out of the hospital, I saw the same patient talking to some fellowwho seemed to be a relative, trying to make plans to go back home. Once hespotted us, he wished us a good evening, raising his hand to the level of his beretwhile smiling with a look in his eyes that showed a mixture of pride and hope,bending slightly forward in deference.

FRAGILE CASTLES: THE PARADOX OF RESEARCH POLITICS 343

This scene has been living in my memory for the longest time. Whenever Ithink it will disappear in the folds of my thoughts, something happens that unfoldsthis memory, now by writing about it, and earlier by other events. For example,one evening I was working together with Dr. Chest Diseases on a paper. Wehad to stop by the emergency unit of The Medical Citadel—the leading institu-tion in cancer research and treatment in Turkey—before he drove me home. Hewent to his office afterwards to fetch some papers, and came back with anotherplastic bag in his hand—another gift. That evening I found out during a conver-sation we had that, with the exception of his shoes, the entire outfit Dr. ChestDiseases had on was put together from a number of gifts: a jacket, a shirt, atie, a pair of pants, and a pair of socks. Five gifts for five hopes, some of themmaybe fulfilled, others maybe deferred, doomed to never materialize—hopelesshopes.

The frequent visits to the clinic and calls to doctors’ homes create a rapportbetween the patient—and his or her family—on the one hand and the doctor—and his or her family—on the other. It is a relationship that is neither formal norinformal. The birth and continuation of this relationship hinges first and foremoston the patient receiving “good” medical service. This is embedded in the patient’sgift to the doctor.

The gift establishes the kind of desired acquaintance between the patient andthe doctor or becomes a vehicle to reinforce their relationship. This reinforcementcreates an obligation on the part of the doctor to be honest in the performanceof his duties as a healer, which usually means giving special care to the patient.This obligation assures the patient and helps build trust in the doctor. The firstchallenge to this trust is pain relief.

The gifts given by patients are of wide range. Most of the time, given thelong-term doctor–patient relationship in chronic diseases, gift giving is highlystrategized, and is usually completed in installments. I realized the size of the gift’simportance particularly when I overheard the discussion of two family membersin the waiting area of the clinic:

A: We give him a small gift [food] first, and next time we give him the silk tie.

B: I think we should give him the silk tie first, and next time we can bring [food]from the village.

A: But then what will we give him should my uncle stay in the hospital?

B: It’s not important; [the doctor] knows us already. He knows we care aboutour man [the patient]. Insaallah (God willing), if everything goes all right,we can bring another [gift]. . . . Don’t worry so much, he treated Ahmetamca (uncle Ahmet) before; Mustafa introduced us. He [the doctor] knowsus.


Patients from TK and KK are not any different. They, too, give gifts. Alongwith gifts they brought, they gave doctors of The Medical Citadel other invaluablegifts: their bodies. For over 20 years, patients from both villages have frequentedThe Medical Citadel, or have been frequented by its doctors in their villages.They participated in one study after another with the hope of being diagnosedearly or even cured (see Good 1991, 2001; Good et al. 1990). These studies notonly involved clinical examination and screening of the patients, but also patho-logical tests, which mostly required blood samples and biopsies. In addition toa number of clinical tests, people from the two villages, especially those resid-ing in Ankara, have been targeted for blood samples five times over the past20 years.

This comment was made by one of the key informants on my first visit to oneof the KK communities in a major town in Central Anatolia:

But they are still experimenting. It is going to be a long time before anything would comeout of these studies. People cannot wait for test results any more. They have put up withthis for so long. They waited for so long. Nothing came out of these studies. One studyafter the other. Patience is lost.

As a key informant to the doctors at The Medical Citadel, this person did not denythe efforts of research so far; yet he did not praise them either. In an interview tocollect the pedigree of one of the TK communities in Ankara, the key informantand I brought up the issue of the new genetic study undertaken by a team ofdoctors from the United State. I assured the informant then that there would be noblood collection involved at this stage of the study. Constructing the pedigree wasinterrupted every now and then by the informant telling of his experiences withThe Medical Citadel and its research schemes. Some other informants partook inthe process, and we ended up reviewing the collective memory of this group ofpeople who all happened to be visiting with Mr. Mustafa, a well-off villager, inthe lounge of his car agency, where the interview was taking place:

-[The Medical Citadel] collected so much blood . . . and nothing happened. Five times theycollected blood, and each time they tell us they found [a] cure and need to do tests.-If they didn’t find what they’re looking for in the past five times [they collected blood],how do we know they are going to find it this time?-Yah, the second time they collected blood they said they are looking for something theycouldn’t find the first time . . . the third time they said now it will be all fixed. . . . Fivetimes! If they didn’t find it in the past, then they are not going to find it in the future. Theyshould leave us alone.-They cannot use our bodies to become professors and chairmen at The MedicalCitadel. . . . My cousin . . . and later my uncle . . . and other relatives . . . went through whatwe call open–close operations. . . . I am a witness. They would take the sick one into theoperation room, and in half an hour they would be out . . . with his [or her] chest cut andsawn. . . . Too late to do anything . . . and [the doctors] know it. They let the patient in to takepieces [of the tumor/lung]. . . . Who can do anything in half an hour? . . . It is not meant to


be an operation. . . . If I am to die, I don’t want my body to be cut into pieces . . . it is of nogood to anybody but the doctors. . . . They have taken enough pieces already . . . for nothing.

The gift was not reciprocated. The hopes were not fulfilled. For years thepeople of TK have slowly layered their shrouds on the doctors of The Med-ical Citadel, gift after gift. Their gifts were only reciprocated in kind: theyreceived their death certificates, which raced to wrap their corpses even be-fore their shrouds. In the process they realized that pieces and juices of theirbodies—the very parts in which cancer expresses its appearance, and in whichtheir death phases are born—had been fetishized. To get the fetish blood, lungfluids and tumor samples, doctors employed every method: blood collection,surgeries, and biopsies. Just as The Medical Citadel thought it finally discov-ered the land of plenty, it started losing its power to the villagers, who becameaware of their fetish possessions and willfully started to deny doctors access totheir bodies. By the mid-1980s, the power balance between The Medical Citadeland the villagers had clearly shifted, only to create a body of the powerfullyweak.

THE MEDICAL CITADEL’S EXPENSIVE MISTAKES

I don’t believe in God anymore.. . . The weatherforecast on TV tells us when it’s going to rain,and [The Medical Citadel] tells us when we’regoing to die.

(TK villager Hayati in Ankara, after entertaininga group of villagers with drinks)

The Fortuneteller

After 25 years of research, The Medical Citadel’s main achievement, in a sense,was foretelling the future. Even that turned out to be redundant knowledge, asthe only future they could foretell was the expiration date of a patient. Withtime, villagers became equally competent at this. The literature shows how overthe long term, chronically ill patients become experts on their specific healthproblems. As such, patients with chronic, rare diseases tend to know even moreabout their disease than the average physician, who has not been directly involvedwith patients with similar conditions (Roushdy-Hammady 2001; Veach and Tai1980). With access to the bodies of TK and KK villagers increasingly denied,The Medical Citadel’s efforts became limited to counting the number of thoseawaiting death and those who actually died. This information was collected fromthe key informants, who became the only mediators between the worlds of TheMedical Citadel and its physicians on the one hand and the villagers on theother.


The names of patients and the dead became mere numbers, isolated from allcontext but carcinogenic erionite—in other words, the environment. I was awareof this isolation throughout my fieldwork, but it never crystallized in my minduntil I went through the experience myself of numbering and denumbering apatient or depersonalizing and personalizing him or her. The alarming thing wasthat I only discovered I had been through that experience a year after the fact,looking at my notes and now by writing this very paper. I ran into a piece ofsky blue notepaper promoting a medicine for asthma developed by a Turkishpharmaceutical company. I noticed Dr. Chest Diseases’s handwriting on it. It wasa note of the phone numbers of Muse Durmaz, who was one of the key informantsfrom KK in one of the neighboring towns. These phone numbers were taken downby Dr. Chest Diseases in a phone conversation to introduce me and to facilitatemy stay in that town. Underneath he had written a name of someone, a woman;in brackets he had written the word “Sweden.” He gave me this little note aftercopying it onto another blue sheet from the same notepad. I could guess that thiswoman was either a patient or someone who had died recently of mesothelioma inSweden. I asked Dr. Chest Diseases if he knew her or any of her family members;he did not.

A year later, after my first two weeks in Sweden, I started seeing the diag-nosed, the dying, and the dead. I met Sabahat Sukru, who had been diagnosedfor over a year then. We had a relationship: I knew who she was, whose daugh-ter, whose mother, whose grandmother, whose mother-in-law, whose wife. I alsoknew her mesothelioma history and her family’s cancer history; I knew her so-cial, biological, and cancer kinship. She became a character in my field notes;every word she said, every cough, every breath, every sweat, every touch of herbody my hands felt to help her turn, sit, lie down, or change her sweat-soakedundershirt. I knew when she had to visit the doctor; I knew when her medicinedosage had to be increased; I also knew how and when she decided to quit takingsome of it. Sabahat became a living character in my field notes, so vivid I canhear her, feel her, and smell her whenever I read my notes, and now as I amwriting these lines. When I looked at the little sky-blue pharmaceutical note, Irealized that the person whose name appeared at the end was none other than thewoman I had met in Sweden and whose death in Turkey moved me when herfamily shared it with me via electronic mail while I was in Germany completingmy fieldwork: Sabahat Sukru. For me, her name is no longer just a casualty oferionite in KK. She is embedded in a web of kinship that can tell me somethingabout the past, the present, and the future of mesothelioma in her family. Thecommon statistical numeration of patients and villagers at risk greatly affectedthe doctor–cancer patient relationship, leading to wider gaps between the differentparties.


Satanic Fame

Before Dr. First Discoverer made his discovery, TK and KK were like any othervillage in Central Anatolia. They never considered themselves particularly dif-ferent. At most, they took pride in the quality of Pekmez (grape molasses) theyproduced, for example. Some of the villagers were sick and died of cancer backthen, too. But that did not make them different from other places, as there arepeople dying of cancer everywhere. Yet the frequency of certain symptoms wasnot unnoticed: the droop in the shoulders and the unbearable pain in the ab-domen. Some had their bodies deform as their tumors grew, slowly but persistentlypushing against their ribs and their skin, or, for some villagers, metastasizing astheir biopsy incisions opened. After the discovery of erionite and its associationwith malignant mesothelioma in three villages in that region, including KK andTK, the title “erionite villages” was developed to refer to them in the literatureand was transformed in the popular media to “cancer villages,” and “death vil-lages.” This was the cause of the villages’ fame: a fame for death, a satanicfame.

This fame for cancer apparently was so effective that it overshadowed otherqualities that the villages were famous for in the past, especially the marketingof certain foods. According to some TK villagers the issue of their disease beingraised in the media did not affect their marketing of agricultural produce. Thefact that the government bought the produce to distribute it nationwide seemed tohave saved TK any stigma in that respect. But things in KK were different in thisregard. KK’s people still depend on their individual efforts to sell their products inthe local regional markets of neighboring towns. The paper that appeared in 1994(Demir 1994) referring to KK as “the village of death” particularly worsened thesituation, according to one villager:

We cannot sell our potatoes, we cannot sell our onions, . . . not even a single grape in themarket. . . . The prices [of the products of our village] are put really low, and we are forcedto accept.

Similar inconveniences were voiced by other villagers. One day I was visitingKK with some rural–urban migrants from the same village. It was during SekerBayram, the feast which marks the end of the holy month of Ramadan. We satdown in one of the houses, eating the lunch we were offered of stuffed grape leavesand freshly made yogurt. While we were enjoying each other’s company, we learntthat Muhsen, the family’s elder son, who sold some produce in nearby towns, hadto leave for a few days. He was going to Afyon, an eight-hour-drive from KK,with a truck of potatoes to sell there. This was their alternative to overcome theeconomic effects of the stigma of cancer in their milieu.


THE DOCTOR–CANCER PATIENT RELATIONSHIP

Labeling the disease and the villages marked an important point in thehistory of the doctor–patient relationship in these villages. This relation-ship has been largely shaped by the villagers’ encounter with medicalresearch.

In August of 1998 we went to TK on a mission. Dr. Chest Diseases had becomea member of a prestigious international association and was trying to receivefunding for a project in TK. We took off from Ankara as a team that includedtwo key informants, two members of the association, Dr. Chest Diseases, andmyself. The real purpose of this trip was to introduce the research team to thevillage of TK through the prestigious association; that is to say, Dr. Chest Dis-eases wanted to show his good intentions to the villagers by launching a projectthat would indicate the association’s willingness to invest in health and educa-tion and recreation projects in the village. This, he hoped, would allow him laterto collect blood from the villagers. Despite Dr. Chest Disease’s good intentionsto relieve the villagers of the burden of their merciless cancer, I could fore-see the aftermath of his new plan. Should he collect blood from the villagers,what would he promise them? There was still no medical cure for mesothelioma,and the villagers at that point were not open to research that would involve thecollection of blood. Thus if Dr. Chest Diseases succeeded in collecting blood,The Medical Citadel’s relationship to the villagers would be at stake once again.He would have to come up with results that brought hope to the community,and not more news about their certain death. At that time, there were no con-crete plans or design of a research study. I could detect another fatal mistake inthe making, another reproduction of The Medical Citadel’s old history with thevillages.

The following day, I had an interview with the Belediye Baskanı (village mayor)of TK, Ali, who was 56 years old at that time, with fair, reddish skin on his cheeks,gray, straight hair, and green–brown eyes. Ali is among the many Turks who wentto Germany in 1966, where he worked as an unskilled laborer, having had onlynine years of schooling. He came back in 1973 to serve as a Belediye Baskanı.

This disease has always been here [in the village]. . . . They used to call it yatalak hastası(the “lying in bed” disease, being bedridden). . . . In 1974 [TK villagers] had just started togo to [The Medical Citadel] for treatment. . . . [Dr. First Discoverer] wanted to meet me. Hewould send messages to me [with our people] who would go to Ankara and come back [tothe village]. . . . He sent me a letter, too. . . . And then, one day, I had just come back fromGermany, when he finally reached me by phone: “Tell me, what kind of man are you? Howcome you are not answering my request to meet you?” [he imitated Dr. First Discovererwhile smiling]. “I am here,” I said. . . . Dr. [First Discoverer] then came to [our] village witha team of specialists.


Being the village mayor, Ali, together with other villagers who later becamekey informants to The Medical Citadel, had facilitated Dr. First Discoverer’s visitsand research in TK. They hoped that The Medical Citadel’s proposed solutionof relocation away from the underground erionite deposits and the building ofnew houses not made out of erionite rock would save the village from cancer.Eventually, with lots of effort on the part of Dr. First Discoverer, the area wasofficially declared a disastrous region in 1983. According to Ali, this meant thatthe government had to provide for new housing units made out of cement bricksand not zeolite-containing sedimentary rocks. The new housing units were placedclose to the entrance of the village. As for KK, the decision to relocate the villageto a neighboring province was not made until 1999, after years of resistance byvillagers.

People resisted relocation as a solution in each case due to complex reasons,the most outstanding of which was disagreement about the explanatory modelof mesothelioma, as not everyone in the researched villages believed that theenvironment was the cause of the disease. The local information agents werenot any different in that regard. I wondered to what extent The Medical Citadelmade use of the Muhtar’s (local registry officer’s) records. The Muhtar, I thought,would be a logical ally to receive reliable information about the rate of death due tomesothelioma in the villages. But “Muhtar zaten dusman oldu . . . (The Muhtar hasalready become an enemy . . .). [He] doesn’t write the cause of death, . . . instead,he records cancer deaths as ecel (fate),” explained Dr. Chest Diseases in a helplesstone. In doing so, the local authorities, especially in KK, added another dimensionof resistance to the satanic fame that befell their village and to medical research.The dimension that comes to mind here is, paradoxically, religious and secular atthe same time. On the one hand, ecel implies an utmost belief in fate and God’swill in ending a person’s life, regardless of the cause. On the other hand, it issecular in the sense that it represents a logical category independent of religion.The villagers still seek treatment in hospitals other than The Medical Citadel, butthey have their deaths reported as ecel to protect themselves from The MedicalCitadel’s interference. The complex implications of ecel in the context of cancerrisk and the corresponding local explanatory model of the disease are addressedelsewhere (see Roushdy-Hammady 2001).

The villagers are not the only ones engaged in acts of resistance—physiciansand medical researchers are, too. However, their resistance is due to theunknown.

BACTERIA FROM MARS!

In the fall of 1998 I was in Ankara contemplating the relationship between theouter environment and the human gene, thinking of the extreme limits on both


sides of this relationship, when I received a phone call from Dr. Pathologist, whois affiliated with a U.S. university and its medical center. He was very excitedabout a new find related to the mesothelioma narrative: bacteria from Mars.

During a previous visit with Dr. Chest Diseases to one of the towns near TKwhere many TK villagers lived, we sampled some rocks and dust to give toa geologist at Ankara University, who was a member of Dr. First Discoverer’steam. The geologist was sampling rocks and dust from the region surrounding thetwo villages to assess the content of erionite in different areas. He examined thesamples we collected and found some unusual bacteria in one of them. Showingthe samples to a number of biologists, they all agreed that they had never seen thiskind of bacteria before. Finally, a picture of the bacteria was taken and sent to Dr.Pathologist. One of the latter’s colleagues recognized the bacteria as similar to oneshowed in one of NASA’s papers about bacteria found on Mars. Dr. Pathologistfound a contact in NASA who was excited about receiving more information onthis issue. The geologist, in turn, took the information of the contact in NASA andpromised to pursue the topic when he visited the United States.

Needless to say, I was very excited about my fieldwork. The unexpected turn ofevents gave it an adventurous flavor that reminded me of fantasies I have had eversince I was a child in love with science fiction films. In a brief romanticization ofthe event I imagined the rock, the rock with the “bacteria from Mars.” I fantasized,“Either there were aliens in [the region], or . . . I am from outer space. . . . ” I wasunder the impression that the geologist would make contact with NASA soon.I was hungry for the news about his visit to NASA. I waited and waited andwaited. A visit with Dr. Chest Diseases and the geologist and a phone call fromDr. Pathologist two months later soon tamed my wild imagination and brought mymind back from its space voyage to face the earthly truth. The geologist did notvisit NASA; he decided to keep the sample for himself. He wrote a short paperabout the incident, and labeled it “top secret.” The information and the sample ofthe unusual bacteria, along with other samples and reports, were sealed up in thecave of the geologist’s world. These feelings of possessiveness over data are notunique—they haunt researchers involved with this project all the time. Some fearlosing control or authority over the mesothelioma project. Others fight to gain thiscontrol.

THE IDOL OF THE CAVE, AND THE MUTATION OF MEDICAL KNOWLEDGE

Biomedicine’s ideal assumption would be: one cause—one sign—onedisease—one therapeutic method. . . . This is the essential reductionistmode of biomedical thinking.

(Ots 1991:44)


By its nature, research yields uncertain results.

(Duff and Campbell 1980:21)

Despite 20 years of research there is still little data on the different aspects ofmesothelioma in the villages. The Medical Citadel doctors, specifically Dr. FirstDiscoverer and his team, have managed to claim the “erionite villages” as theirown property in all scientific circles. By doing so, they have alienated the entireresearch community in Turkey, consciously preventing them from participatingin any research activity related to the issue. This applies to researchers in allfields, including anybody at The Medical Citadel who is not part of Dr. FirstDiscoverer’s team. For international scholars and researchers, this means no accessto any samples, material, or data in general without going through the Dr. FirstDiscoverer team.

On the local level, Dr. First Discoverer was the only authority on the subject ofthe erionite villages. At early stages of my fieldwork, I tried to open up my horizonsto get different perspectives on the topic. I tried to approach epidemiologists,(molecular) biologists, oncologists, surgeons, and social scientists within andoutside The Medical Citadel circles. “You should talk to Dr. First Discoverer atThe Medical Citadel. He is the one who did research in the erionite villages,” waswhat I hoped not to hear, but always did. I realized later that this was deliberateon the part of The Medical Citadel’s erionite villages research team, especiallywhen I started getting more and more involved in research activities with Dr. ChestDiseases. Knowing that I traveled around Turkey meeting different sorts of people,he always reminded me, “Don’t talk about our work when you meet biologists atthe different universities.. . . Don’t mention the data you have access to when yougo to Istanbul.”

One day I was looking for a study about the genetic profile of the Turkishpopulation. I finally was referred to a biologist in a big university in Ankara. She,in turn, referred me to a molecular biologist at The Medical Citadel, to whom Ipaid a visit and explained my relationship to the Department of Chest Diseases atThe Medical Citadel, located two floors above her office. It seems that she latertold Dr. Chest Diseases about our meeting and expressed her interest in joiningthe study. That night, Dr. Chest Diseases called me up at a late hour, and angrilyreprimanded me:

Iman . . . you have to understand that you cannot be an independent scholar work-ing on TK . . . They all were trying to join our studies . . . for many years wekept them all away. . . . Nobody can work on the erionite villages except throughus.


This turmoil came to an end with a decent apology. Dr. Chest Diseases knewby that time that I had a solid connection to the erionite villages. He knew I waswriting three papers to be published for him, collecting data about nutrition in theregion for a biological study about antioxidants and mesothelioma, constructingand updating pedigrees, and trying to help him introduce the idea of genetic therapyas cutting edge technology in cancer treatment to the villagers in an attempt toconvince people that they should participate in another round of blood samplecollection. He realized that over time we had developed a strong comradeship andfriendship based on mutual trust, which made his behavior seem very contradictory.But the molecular biologist at The Medical Citadel was someone who had to beinvolved after all. She was in charge of the lab where lymphocytes were to beseparated for pathological and molecular investigations. Dr. Chest Diseases wasoffended because I contacted her without going through him, and worse, evenwent through someone at a different campus. By that time, the team, includinglocals and internationals, had lost complete control over my movements, andsome had even become dependent on me. Because of this resistance on my part,I was able to collect data that were an accurate reflection of what was happeningon the ground, using a perspective different from preset models of bioscienceinterpretations. Though my collaboration and efforts were appreciated, Dr. ChestDiseases at times treated me as if I were a wild creature who needed to be tamedand socialized into the culture of research procedures and politics.

Though the data from possession of the erionite villages gave power, control,and authority to The Medical Citadel team, it also placed them, together withthe villagers, in a cave, a la Plato (Plato 1949). They had created an idol andimprisoned themselves in the limited, defined cave of their own knowledge, reify-ing an ideal type that had only some connection with the real world. Over thepast 20 years, the research papers they published—though innovative at the be-ginning, from my perspective—started to reproduce themselves to confirm theresearchers’ theories: same problem formulation, same rationale, same techniquesof data collection, same methodology, same results. Ensconced in their cave, theysaw only one fact: erionite. Every other aspect of the environment, the history,and the disease were disregarded, seriously biasing causal inferences. This cavealso protected researchers from possible challenges to The Medical Citadel’s pi-oneering discoveries and its leading theory about the ultimate causal connectionbetween erionite and mesothelioma. Researchers from The Medical Citadel havecollaborated on and coauthored different scientific papers in different capacities,and while this lends a given research project on the topic validity, it also giveseach of the participating doctors and researchers at The Medical Citadel more au-thority on the subject. Yet this happens in different scientific circles globally, andis an important part of research politics. Like their counterparts in internationalacademic circles, The Medical Citadel team—perhaps unconsciously—built their


cave out of statistics and numbers that were interpreted to suit a desired result.Within the cave, an idol constructed out of particular medical knowledge wascreated and passed from one generation of researchers to another as the verytruth. This perpetuated knowledge provides a bond, similar to that of kinshipin the villages, in the medical community. It gave the community an identity,a system of knowledge, where each member was, at one point, the supervisorof a younger member. With time I noticed that I was, in fact, dealing with adogma.

Yet during the two mesothelioma conferences that happened in Turkey in 1997and 1998, I could detect a hint of an academic disagreement which might haveled to research complications. In fact, even academic disagreement seemed tobe a way to establish one’s authority over a certain research territory. Theseconferences helped me realize the intergenerational dynamics and politics betweenmesothelioma researchers at The Medical Citadel and generational differencesin scientific beliefs on the global level. Dr. First Discoverer, the head of thedepartment of chest diseases at The Medical Citadel, was to retire in March of1998. A new trend in mesothelioma research seemed to be taking a differentdirection, defined by progress in the field of genetics. The dichotomy in theresearchers’ world and their disagreement on the causes of mesothelioma in Turkeybecame more apparent in the Turkish context in April of 1998 during the secondmesothelioma conference, which took place at a Turkish university other than theone where The Medical Citadel is.

There was no explanation why the conference was held at a different university.The only person on the team who was affiliated with this university was thegeologist, the one closest to Dr. First Discoverer at the time. Nevertheless, thechange of the conference location, and its coincidence with Dr. First Discoverer’sretirement, seemed to mark his feelings of detachment from his department atThe Medical Citadel, whose chairmanship was being passed on to his rival. Yetbecause he was still recognized as an authority on the subject of mesotheliomain Central Anatolia, he was respected in both Turkish and international medicalresearch circles.

The conference title was “Malignant Mesothelioma: How to face its rising inci-dence? New perspectives for therapy.” Dr. First Discoverer gave the introductoryspeech, and the first talk. To me his talk was rather emotional. He describedhis current interest in the northern center of Anatolia, where increasing cases ofmesothelioma could be witnessed in other provinces. Then he reported a case fromTK of a 45-year-old patient who had left the village at the age of 12. The patientwas reported to have heard a “noise” in the right side of his chest. “I took his pulseand examined him . . . I heard a scary ‘noise’ . . . suicidal case . . . suicidal case,”concluded Dr. First Discoverer. By “suicidal case” he meant that the patient wassuffering from the very late stages of the disease, which were so frightening that


a person would commit suicide to relieve him- or herself from the pain and fear.That was the extent of the talk.

Next came Dr. Pathologist, whose talk reiterated problems with Turkishmesothelioma research. It was entitled “Epidemiology, Polio Vaccine, and Can-cer: commonly told lies and few facts.” The talk largely emphasized how politicsmixed with science when it came to the issue of malignant pleural mesothelioma.Dr. Pathologist himself had worked hard at proving that Simian Virus 40 (SV40)present in polio vaccines administered world wide between 1959 and 1961 andbetween 1962 and 1964 caused malignant mesothelioma, and he had publishedtwo papers between November of 1997 and April of 1998 demonstrating his ex-perimental results. He hypothesized that the incidence of malignant mesotheliomawould continue to rise significantly. According to Dr. Pathologist, the contamina-tion was detected in 1961, but it was decided to continue selling the vaccine at thetime.

Dr. Pathologist’s theories had been putting him in challenging debates withthe scientific community worldwide, as this issue is very controversial. He citedvarious other studies2 in this category and criticized them for making their ar-guments without conducting epidemiological research or showing any reliabledata. One of his critiques was that the statistics presented did not distinguishbetween children and grown ups in the data analysis. However, he ended by stat-ing that U.S. specialists were still in disagreement about what type of asbestoscauses mesothelioma, since they get paid by asbestos companies. “On the otherhand,” he added, “the courts are full of false malignant pleural mesotheliomacases.”

Though he did not mention the Turkish context even once, Dr. Pathologistseemed to be implicating and questioning Dr. First Discoverer’s entire mesothe-lioma project, claiming unclear methods of data collection; inadequate familypedigrees showing at most three generations, including children; lack of patho-logical diagnosis in most of the cases, especially in the last 15 years; lack of ageological explanation of the different kinds of erionite in the region; and theconcentration of the disease in just three villages, while the whole province hadundergone the same geological changes. These issues became more urgent ingeneral when Dr. Biologist from Italy gave his talk about recent research done inrelation to gene therapy and malignant mesothelioma, emphasizing reliable datacollection as crucial to identifying the missing or mutating gene responsible forthe disease.

Nevertheless, despite their ardent—yet hidden—criticisms of each other, noneof the speakers offered alternative research methods to apply in the case ofmesothelioma in Turkey. To me, they all seemed to be using the same princi-ples and methodologies of research, yet with different emphases depending on theinterpretation they were trying to push for.


On the other hand, all of these researchers and doctors still collaborated onscientific papers. They all competed among themselves over controlling mesothe-lioma research in the area, yet they owned different assets that, in the eyes of theinternational scientific community and review committees, complemented eachother. At times these collaborations were meant to establish allies against othergroups of scientists, or even to alienate the latter from the Turkish mesotheliomascene.

THE IMAGE, THE CANCER STORY, AND THE STRATEGIES OF MEDICAL RESEARCH

The Image and the Manipulation of Macro Processes

Turkish and international TV screens offered a site where images told their ownstories about mesothelioma in KK and TK. Since the autumn of 1999 there hadbeen a number of programs discussing the problem there, the involvement ofThe Medical Citadel and the efforts of Dr. First Discoverer, with the intentionof convincing the government to relocate the villages. Subsequently, news aboutrelocation filled Turkish news sites on the Internet.3

In a phone conversation, the main TK informant to The Medical Citadel at thetime expressed excitement about the project. However, migrants from TK, andthose in Europe in particular, who had spent a lifetime investing in their villageof origin, were disturbed by the news and resistant to the idea of relocation.A week after this conversation, I received news from migrants in Sweden, whowere informed by their kin in KK and in other nearby towns, that relocationwas being planned for their village as well. No one seemed to be happy aboutthis there, either. In contrast to TK, for which the suggested relocation site waswithin a little more than two miles of the fringes of the village, KK would haveto be relocated to a neighboring province. This strategic plan on the part of Dr.First Discoverer seemed, paradoxically, to provide an additional source of riskfor those villagers who would have preferred to maintain the status quo.Therewas a myriad of explanatory models of cancer among the villagers which did notall coincide with that of The Medical Citadel. Many villagers believed that theirdisease was familial, while others believed that it attacked weak bodies, and yetanother category believed that it was related to poor diet, dirt, or even the air. Therelocation put at risk particularly the investments of migrant villagers. However,these events did not seem to be new. In 1994, Turkish popular magazines talkedabout “the cancer villages” and showed pictures of women visiting their deadin the graveyard of one of the villages (Demir 1994). Other reports, I was told,appeared on TV in the 1970s and 1980s. In this most recent effort to gain publicity,Dr. First Discoverer included the American media in the hope of attracting globalattention and funds for TK and KK. While this broad media coverage was meant


to make the work of Dr. First Discoverer and The Medical Citadel more known tothe public and collect funds for the villages, for many villagers, it was a source ofstigma.

Frisullo

If Italy can help Turkey with TK, Turkey will not do harm to the journalist.They will appreciate what Italy is doing for them. . . . Frisullo is aleftist, but all factions of the government want him back because he isItalian. . . . The government will trust me because they cannot lose faith inan Italian. . . . They liked the idea. At the same time, Turkey will not lookbad in front of the E.U., which it is trying hard to join.

(Dr. Pathologist; Ankara, April 22, 1998)

It is interesting how other images on the screen, not related to the villages, weresought by researchers as strategic tools. A particular incident took place in 1998which generated a unique situation on the research scene. The incident, describedbelow, shows the potentially intricate relationship between political issues inTurkey and the resulting interpersonal politics between local and internationalresearchers on the one hand and the issue of mesothelioma in the Anatolianvillages on the other.

For about two weeks before the second mesothelioma conference in April1998, the local, national and European media were concerned with a single eventinvolving one person: Frisullo. Dino Frisullo was an Italian journalist who wasknown to be a leftist. He was covering Kurdish events on the eastern bordersof Turkey when he was depicted on global TV showing the victory sign withhis fingers in favor of the Kurds. Consequently, Frisullo was put under arrest bythe Turkish authorities, who interpreted his behavior as public support for theKurdistan Worker’s Party (PKK), a Kurdish separatist organization outlawed bythe government.

This event caused tension between Turkey and the Italians, and also the entireEuropean Union (E.U.). It was demanded that Turkey release Frisullo, a requestthat was not immediately welcomed by Turkey. Meanwhile, public opinion inTurkey was against Italy. At that time I received dozens of e-mails encouragingthe boycott of Italian products. Many people cancelled their trips to Italy. DifferentTV programs and talk shows made sure to keep the resentful feelings of the publicroused against Italy. The country as a whole was made aware of the issue, to theextent that a shoe cleaner shown on TV on the streets of Istanbul mentioned thathe refused to clean shoes made in Italy!

In the midst of all this upheaval, the April 1998 mesothelioma conference beganwith two Italian speakers. The following day, we had a meeting which included,


on the Turkish side, Dr. First Discoverer, Dr. Chest Diseases, a pathologist atThe Medical Citadel, the geologist from the Turkish university, and his wife, anindependent scholar; on the Italian and American side were Dr. Pathologist, whowas of Italian origin, Dr. Biologist of Italy, and myself. Each camp seemed torepresent not only a country, but also certain interests. The Turkish camp sawitself as the owner of the project, the project of the erionite villages. They werethere to see about possibilities for raising funds for future research and, mainly,relocation of the villages. The Italian camp was there to find ways to do geneticresearch in the erionite villages. And there was myself. I debated whether, in ameeting like this, I was representing the villagers, medical anthropology, myself,or all three. I was certainly not representing a country or an institution, despite thefact that I was associated with both. Everyone had a definite position and a side totake, but mine were liminal.

The discussion soon revealed the strategies and agendas of the participants.Dr. Pathologist had in mind funding for research, while Dr. First Discovererwas more concerned about funding for relocation. They tried to agree about aplan to discuss with the Turkish minister of health the morning following themeeting. As if he sensed my curiosity to know what was going to happen thefollowing day, the geologist scribbled in my notebook during our meeting thathis brother, who was the chief medical inspector for the Ministry of Health, hadscheduled this appointment. I also learned that the Turkish pathologist attendingthe meeting was the cousin of the minister’s counselor in charge of internationalhealth projects and grants. The counselor had agreed to arrange for a meetingbased on Dr. First Discoverer’s request. It was interesting to see how the politicsof the institution of modern medicine was managed by structures of kinship amongmedical professionals.

What I thought was a local arrangement among The Medical Citadel team,the Ministry of Health in Turkey, and the Italian and American doctors, becametransnational underground politics, albeit for a limited time. Dr. Pathologist, whohad been very enthusiastic about launching new research in the erionite villages,proposed an idea that both the Turkish and the Italian governments could talkabout. The idea was to suggest to the Italian government that it make a grant to itsTurkish counterpart to benefit medical and other projects in TK in exchange forthe handover of Frisullo, the Italian journalist, unharmed. The pathologist fromThe Medical Citadel mentioned he was not sure they could bring up such a highlycharged issue with the Ministry of Health. Dr. Pathologist, however, explainedthat he would make the suggestion and take the responsibility.

As soon as the meeting ended, the two Italian doctors began looking at theirwatches and madly making phone calls to members of different parties in Italy,trying to find the person to whom they should address Dr. Pathologist’s suggestedrequest. Dr. Pathologist spent the day of the conference and the day after preparing


the proposal to send to the Italian government. I could tell from my phone con-versations with them how eager the Italians were to get Frisullo back. They wereready to do anything. These were times of a great deal of excitement and anxiety.Dr. Pathologist went so far as to fantasize about resulting newspaper coverage inTurkey, Europe, and across the whole world: “We will be praised for our ‘heroic’action . . . and we will be able to fund research in the [Anatolian] villages.”

At the scheduled appointment at the Ministry of Health, Dr. Pathologist wasinstructed by the Turkish doctors not to talk about Frisullo. On the basis of Dr. FirstDiscoverer’s suggestion, I was not allowed to go to the meeting. Not surprisingly,the accounts I heard were very subjective, almost reflections of the larger politicaltension that existed between Turkey and Italy. Dr. Chest Diseases thought thatthe meeting was successful; he particularly stressed the minister’s willingness toreceive Italian/E.U. funds for research in the erionite villages. Dr. Pathologist, onthe other hand, could not see the benefits of the meeting, because the problem ofgetting funds still remained. He thought that negotiating the exchange of Frisullofor a research grant was the reason it was meaningful to ask for funds from Italy orthe European Union to do research in Turkey at that time. This meeting officiallyended the foreign doctors’ visit to Turkey, and everything went back to normal. Twoweeks later, the European Union had successfully used diplomatic measures tonegotiate the case of Frisullo with the Turkish government. This regional problemwas solved, and Dr. Pathologist felt that we had lost a great opportunity, as nowhe had to look for other ways of funding this research.

The story did not end there. After doing fieldwork among doctors and institutionsintensely for five days, I went back to pursue my research among the villagers.I wanted to know how and when information from the world of doctors andresearchers was being shared with the villagers. There had already been a greatdeal of talk about receiving money from Italy “to help TK” over the five monthssince the previous mesothelioma conference in November of 1997. I was eagerto know how much of the macrolevel politics nested around the villages wererevealed to the villagers. Three months later, it finally happened. Cevdet, the TKkey informant, reported about the update that Dr. First Discoverer gave him on thesituation of the grant from Italy: “Well, the Italian money didn’t work out. . . . [Dr.First Discoverer] said that the people who wanted to give the money supportedthe PKK . . . that is why he refused it.”

The reasoning given to Cevdet reflects yet another of Dr. First Discoverer’sstrategies, as well as the role that he perceived himself playing in the erionitevillages. Despite all the changes in the trust level of people in the villages, whichaffected his relationships with many of them, Dr. First Discoverer still tendedto take the role of a fatherly figure, especially when it comes to research in theregion. By giving the answer above, Dr. First Discoverer still assumed the roleof a savior. He provided virtual protection to the villagers from outside, virtual


risks that might hurt them politically. Doing that might have been an attempt tosecure the trust of the key informants, as well as others, especially in TK. Dr.First Discoverer’s answer was consistent with the model of thinking that most ofthe Turks had at the time. It coincided with the political beliefs he and everyoneelse shared as good Turkish citizens, and that therefore could not be contested.On a different occasion, Dr. Chest Diseases reflected on Frisullo and the eventsthat surrounded the April 1998 mesothelioma conference, saying, “We would allhave been seen as supporters of the PKK had we let [Dr. Pathologist] pursue hisplans. . . . We would have all been in trouble.”4

The proposal Dr. Pathologist had was far more political than he, or myself,thought it actually was. The decision to prevent him from bringing the topic up tothe minister was a measure to stop a political risk. Yet the decision not to sharethe events with the villagers of TK and not to let them participate in the decision-making process about an issue that concerned them at the time was a measure tostop a virtual risk.

The Scandal of Genetic Studies

A year later, in July of 1999, another incident which has had effects reaching intothe present occurred. At that time I was in Germany conducting fieldwork andsurveying TK migrants. At the end of three years of fieldwork, I thought I wasvery comfortable with the way I approached people for interviews. I explained thenew hope of discovering a genetic factor and therapy for villagers’ cancer, andthis idea had always been welcomed. But then I had the first interview in one ofthe towns in Germany.

It was when I uttered the word “genetic” that Tahsin, a TK villager visit-ing with his parents in Germany at the time of the interview, expressed hisconcerns:

Genetic research? . . . It is bad . . . there is an Armenian in America, a doctor, . . . he is collab-orating with the CIA and another doctor in Turkey . . . to study the Turkish [race] and destroy[it]. . . . The minister of health said on [Turkish] TV. . . . Some watched [the program] abouttwo weeks ago.

This certainly came as an unexpected surprise. I have heard different versions ofthe story since, but the main elements of the story seemed to be that there wasa news item on Turkish TV discussing an investigation done by the Ministry ofHealth into the issue. An Armenian neurosurgeon in America involved in geneticstudies in Turkey was said to have been engaged in a project to determine the“Turkish gene.” The study was meant to supply the CIA with information whichArmenians could employ to construct genetic weapons that could be used againstthe Turkish people.


Meanwhile, another rumor was started in Turkey, and was later passed on by TKvillagers to their relatives in Germany. According to that rumor, a Turkish doctorwas engaged in a genetic study, the purpose of which was unclear. Dr. ChestDiseases thought that this second rumor was probably started among doctors froma rival medical institution in Turkey. He thought he was implicated in this rumorsince he was interested in collaborating with international doctors on a geneticstudy about mesothelioma. As his relationship to Dr. First Discoverer had beenexperiencing occasional difficulties, Dr. Chest Diseases felt particularly uneasyabout the situation.

I could not examine the rumors while in Germany. The issue did not come upwhen I traveled to other cities and towns in Germany, which made me believe thatit was a limited rumor, and it never came up when I talked to TK villagers on thephone, even though I mentioned genetic research. But the situation did not staythat way for long. In the summer of 2000 I was at a meeting at a known cancercenter in the United States to discuss future genetic studies in TK and KK. ATurkish doctor was there as a fellow of the cancer center. When she realized thatthe cancer center, Dr. Pathologist and I were attempting to apply for grants fromthe National Cancer Institute to carry out genetic studies in the Anatolian villages,and hence the need for official permits from the Turkish government, she soonexpressed her doubts to me: “It’s not a good idea to ask for permits for geneticresearch in Turkey at the moment. . . . Genetic research! You know, it will be verymuch doubted at the moment.”

The fellow did not seem to be informed about the reasons for this stigmaagainst genetic research. She only uttered a few unrelated words that did notexceed the mention of the Armenian doctor. In vain I tried to find out more aboutthe story. However, people were mostly confused about the details. Some wereeven not sure what exactly happened, when it happened, and who was involved.They believed, though, that there was something wrong with conducting geneticresearch.

In my mind, the development of this story paralleled that of biopsies among thevillagers. After 25 years of interaction with modern medicine, the villagers cameto believe that biopsies would make the disease worse, probably because in thepast tumors could metastasize through biopsy incisions; but today, villagers arenot sure why they came to this belief which urges them to refuse biopsies. In bothcases, communal memory was selective, keeping what it believed to be the moralof the story and slowly discarding the details.

For researchers who are interested in genetic research, this incident poses a bigchallenge. Now, research strategies do not just include plans to gain villagers’trust, but also the state’s trust. The more the temporal distance from the date ofDr. First Discoverer’s discovery of the erionite villages, the more complex thesurrounding events, the explanatory models, the involved agencies, the risk, and


the strategies necessary to deal with the issues and stories of cancer in everydaylife situations of everybody involved, from the village to the global level, become.

The Image of Risk and Recombination in Scientific Knowledge

The important thing you have to learn about medicine is that you shouldknow what the doctor is talking about, instead of arguing that he doesn’tknow what the patient is talking about.

(Dr. Pathologist, Ankara, April 23, 1999)

Over the past two decades, research on the erionite villages has trapped itself inits own reasoning, leaving no room for new explanations of the disease to cometo light. This reasoning is embedded in a system of medical knowledge that hasa recombinant nature, in the sense that it reproduces itself in new generations ofresearchers, local and international, who are socialized into the same structure ofmedical knowledge.

The doctors and researchers involved in this project have entered an intricatematrix of risk. Aside from being ossified in their system of knowledge, theyhave become extremely possessive of the subject matter, each referring to theerionite villages as “my project.” The risk lay in claiming this as private property.Researchers tended to inherit the same attitude toward the tools and subjects ofscience from the knowledge system they were socialized in. A manifestation ofthis inherited attitude were the long arguments over authorship that took placewhenever a research paper was suggested for publication.

As the villages and their people were objectified, so was I. For Dr. First Dis-coverer, and at times other members on this team, I couldn’t be owned, and henceI was a risk. The risk I posed lay in my capacity to collect data independently ofThe Medical Citadel and in the potential that I would share this data with otherresearchers, thus shifting the ownership of the project from The Medical Citadelto other parties. Losing complete control was the real risk. This was noticed byDr. Pathologist, who encouraged me at our first meeting to resist what he referredto as “the old school.” By this Dr. Pathologist directly implied Dr. First Discovererand his possessive attitude toward the project.

Three years passed before I realized that Dr. Pathologist, himself a doctor withtraining in medicine very similar to that of Dr. First Discoverer, was equallypossessive and felt at risk of losing control. In December of 2000, when he knew Iwas being considered for a position at a cancer center in the United States, anotherof whose members was a specialist in mesothelioma and genetics, he declared warto protect what he defined as his property: the mesothelioma project in Turkeyand my Self. Around the same time, I had been offered a position as a researchassociate at his institute to complete work on the villages in question. This was


when I realized that I was perceived by him and other doctors as a precious researchtool and a key to data collection. I had become a fetish. In an e-mail addressed toa geneticist at this U.S. cancer institute and carbon copied to me and others, hewrote,

If [the cancer center] gives a fellowship to Iman to continue work under my direct supervi-sion on the Turkish project, I would certainly have no concerns. My concern, however, isthat if Iman works for [the cancer center], your institution might want credit for this . . . toapply for an NIH grant or to have senior authorship on a paper. This would be a problem,because this is my project . . . and I cannot afford to give up my role as PI.

Aside from fetishizing an individual in the name of research, this e-mail excerptexplicitly lays out the important locus of research in the scientists’ world. Own-ership of a research project here turns into the equivalent of an investment withpotential profits. This commodification of medical research strips it from its moralvalues and its mission to relieve humanity from the burden of disease, turningit, paradoxically, into an asset, a factor of production in the competitive researchindustry. His e-mail continued,

I proposed to Iman that I hire her for 1 year (May 2001–May 2002). During this yearshe will complete her part on the Turkish mesothelioma project. As soon as we have theremaining information of the families in Turkey . . . we will start attempting to isolate themesothelioma-susceptibility gene, which is a laboratory study.

Iman will continue to be involved since she played a major role to demonstratethat mesothelioma in Cappadocia is genetically transmitted, but necessarily the workwill be done in a molecular laboratory, not in the field. At that time, which is aboutMay 2002, Iman could start her fellowship [at your cancer center]. Alternatively, ifIman [should start her fellowship in the cancer center] immediately, and she wishes towork on my Turkish project, then we must make it very clear . . . that a.) Iman wouldinitially work to complete the Turkish project, which is [Dr. Pathologist’s] project, whotherefore, supervises Iman without interference of any sort, including sending Iman toSweden and Turkey for as long as I deem necessary; b.) when Iman [completes] her workin the field on the Turkish project, she will continue her fellowship at [the cancer center]. . . .

As soon as I have the DNAs, I will plan with you the best way to proceed to isolate themesothelioma susceptibility gene. At that time, we may apply for NIH funding together.

Though the general reaction at the cancer center to this e-mail was critical, twomonths later I received the following e-mail from the geneticist at that cancercenter:

Hi Iman,. . . [The director of the X program at the cancer center] gave a talk at Chicago . . . recently.One of the people he met with was [Dr. Pathologist], who said his piece. After thatdiscussion, and discussions at the cancer center, [he] decided that the reasonable thingto do is allow you to spend 8 months finishing the data/sample collection work, . . . withsupport from [Dr. Pathologist]. After that, you would be offered a traineeship here to work


on more local projects of mutual interest. . . . This is a compromise. . . . I hope that this typeof arrangement meets with your approval . . . We look forward to helping you meet yourcareer goals.

The above excerpts are another illustration of the intricate and multidimen-sional matrix of research politics and the constant tension among its elements inquest for ultimate authority over medical research and its results. One dimensionof this matrix was the question of my appropriation as an anthropologist. I be-came a fetish because of my ability to help translate anthropological data intoepidemiology maps that seemed promising for genetic research. The determin-istic chronology setting the future of my career was no different from planningprojects and grant proposals. Given the potential of anthropological contributionsto medical research, I was seen as a valuable element that Dr. Pathologist and thegeneticist at the cancer center wanted to extract for themselves, the same way theywanted to extract the DNA of villagers from KK and TK.

Another dimension of the matrix of research politics is that of simultaneouscompetition and interdependence among the different researchers, which I hintedat earlier. For example, while Dr. Pathologist and the geneticist were in conflictwith regard to the question of my appropriation, their collaboration on otherresearch projects in particular and their indispensable mutual support in the worldof research in general led them to reach a compromise and resolve the issue, asshown in the last e-mail excerpt above. Besides, the geneticist, who had no directconnection to either the Turkish research team or the populations at risk, had todepend on Dr. Pathologist for coauthored publications about the topic and myselffor data access. Yet while Dr. Pathologist tried to claim authority over what hecalled “his Turkish project,” he was dependent on the Turkish team and me foraccess to data regarding the populations in question.

A third dimension of this complex matrix is the question of specialization inthe context of medical research at a given time. While genetics is the latest “buzzword” in cancer research, none of the main actors on the mesothelioma sceneof Turkey is a geneticist. Dr. First Discoverer and Dr. Chest Diseases are chestdisease physicians; other members of The Medical Citadel team were a geologistand a pathologist; and Dr. Pathologist was, clearly, a pathologist. Everyone’s riskof losing authority over the mesothelioma research increased inversely with hisor her degree of specialization and with the speed with which scientific trendschanged, especially with the revolution in genetic research in recent years. Thefact that none of them was a specialized geneticist increased the urge for powermaneuvering to keep their roles as principal investigators or co-authors on futureresearch papers exploring hereditary aspects of mesothelioma. A new hierarchybased on specialization was in the making. Dr. First Discoverer, whose discoverycontinued to be credited globally, was at the top of the hierarchy and had managed


to stay there for many years. His high status and position as the chief of thedepartment of chest diseases at The Medical Citadel helped him control doctorsin all of the specialties he needed, such as surgeons and pathologists. When Dr.Pathologist appeared on the scene, he perceived the role of a pathologist to beof highest importance. He was originally interested in testing lung tissues ofmesothelioma patients from the erionite villages for Simian Virus 40, as this hadbeen his major area of study. He belonged to a generation of scientists from aperiod when viral explanations of cancer dominated spheres of medical research.

When I gave Dr. Pathologist access to the family pedigrees of the villagers at risk,he assumed the role of a principal investigator, a position he was at risk of losingwith the projected increase of the study, as it would require the involvement ofmore and more specialists in the fields of genetics, epidemiology, and biostatistics.Commenting on Dr. Pathologist’s e-mail above, the geneticist at the cancer centersaid:

It is fine for him to be a PI now. . . . But what if the study got really big and required aserious segregation analysis? . . . Who would want to do all the work, and then have hisname just appear in the middle [among other co-authors]?

After 25 years, the new genetic research promise might become nothing but arecombinant defect in the research approach, reproducing old scenarios of medicalresearch systems. In a 1998 fax correspondence addressing the villagers of TK,Dr. Pathologist described his plan of conducting genetic research, giving hope thatafter identifying the mesothelioma susceptibility gene, it would not be difficult toget a pharmaceutical company to sponsor free genetic therapy for all villagers. Onthe basis of this promise, some villagers gave consent for their family trees that Ihad constructed to be shared with Dr. Pathologist.

A year later I had a meeting with Dr. Pathologist and others at the cancer center inAmerica regarding research results showing a possible genetic susceptibility factorthat could be related to mesothelioma in the studied populations. The purpose ofthe meeting was to discuss future plans for the erionite villages. Everyone wasexcited about conveying the idea of genetic therapy to the Turkish team, andparticularly to the villagers. The question, however, was what about the peoplewho we had established were genetically predisposed to mesothelioma?5

Three days later, Dr. Pathologist, on a long distance phone call, tried hardto convince me that I should communicate this information to the villagers. Iasked suspiciously if he had a solution for them, and the answer was negative. Icould immediately sense the shadows of Dr. First Discoverer’s pioneer experiencewhen Dr. Pathologist suggested that we would need family counseling centers tocommunicate this information to the villagers. As he spoke, I was thinking aboutone thing: the symbol of death. Dr. Pathologist was following the path of Dr. First


Discoverer, except it had taken two decades for the latter to become this symbol.And I saw it had taken less than half that time for Dr. Pathologist to reach apotentially even worse destiny. If this “prevention plan”—counseling people withthe genetic cofactor against marrying one another—was ever enacted, the teamof Turkish and international doctors would be actually singling out individualswho were destined to die, thus extending the number of their years of fear. Icould not imagine delivering the news about the outcome of the new research inthe framework of death to the villagers. This was when I realized why Dr. ChestDiseases had frequently expressed fear that the villagers would develop new hopein genetic research. In the end, I managed to convince Dr. Pathologist that theresults we had were still at a preliminary stage of a long-term project, and that thedifferent local, social, moral, and ethical issues involved in this matter ought to becarefully considered, in addition to the remaining uncertainties about the outcomeof current genetic therapies.

The truth remains that, despite everyone’s good intentions in helping victimsof the disease, there is still no certain, immediate solution to mesothelioma. Myexperience with Dr. Pathologist helped me reconstruct The Medical Citadel’shistory with the erionite villages from the viewpoint of a researcher. However,the villagers of KK and TK would not subject themselves to painful researchprocedures again just for the sake of helping out scientists and without reapingany benefits.

THE ANTHROPOLOGIST IN THE POLITICAL MATRIX OF MEDICAL RESEARCH

This paper focuses on the experience of the anthropologist as an integral com-ponent of the ethnographic narrative of cancer research. Depicting my dual roleas an ethnographer and a research element embedded in the cultural web ofmedical research, this paper vividly portrays the tension inherent in this dualityand its resulting interaction with the ethnographic event. Through its panoramiclens, this ethnography sheds light on the globalization of research politics andthe bitterly competing forces in quest for power and control of local mesothe-lioma research in the Anatolian context. Underlying this context, the multi-ple and complex perceptions of cancer risk on the part of the local popula-tions and the corresponding change in the doctor–cancer patient relationshipadd a vital dimension to the intricacy of the political matrix of mesotheliomaresearch.

The need for medical ethnography to deal with challenging bioethical questionsin the realm of genetics has never been more urgent. Future ethnographies ofgenetics need to elaborate the moral worlds and subjectivities of physicians andresearchers in addition to the researched population. Yet such endeavors willnever be comprehensive unless they also recognize the subjectivity of the medicalanthropologist and the ethos and ethics of medical research.


ACKNOWLEDGMENT

My deepest gratitude goes to Arthur Kleinman, Mary-Jo DelVecchio Good, andByron Good for their useful comments and suggestions on previous writingsthat led to the development of this paper. I also offer thanks to Dr. Salih Emriand the Tunc and Taskin families for their invaluable cooperation. Many thanksto the indefatigable Ken MacLeish and Martha Fuller of Culture, Medicine andPsychiatry for their efforts editing my work. This research was facilitated throughgrants from the Population Council-MEAwards Program, the Ford Foundation,the Martha Stewart Fund through Mt. Auburn Hospital, Harvard University, theDepartment of Social Medicine at Harvard Medical School, and the Center forMiddle Eastern Studies at Harvard University.

NOTES

1. The names of doctors and researchers have been replaced by pseudonyms indicatingtheir areas of specialization. The names of medical institutions have likewise been replacedwith pseudonyms. All other names of people, aside from mine, and of specific places havebeen changed to protect confidentiality and assure anonymity. The actors and institutionsdescribed in this paper and “Contested Etiology: Cancer Risk among Two Anatolian Pop-ulations in Turkey and Europe” (Roushdy-Hammady 2004) are the same, but differentpseudonyms are used in each to reflect specific stylistic and analytical concerns.

2. He mentioned studies by Bob Garcia at Harvard University, H.D. Strickler at AlbertEinstein College of Medicine, and Li Fraumeni, who headed the Center of Epidemiologyand Cancer at the NIH until 1999.

3. See, for example, TurkNewsler, at http://www.turknewsler.com.4. Most of the people I knew in the different cities and towns, regardless of their

educational level, believed that the Kurdish problem was amongst the main reasons whyTurkey had difficulties joining the European Union as had been reiterated in the media, theproblem gave an excuse to the European Union to accuse the Turks of violating humanrights. Nevertheless, the general belief was that the PKK, which had been viewed as a“national symbol” from the point of view of the Kurds, was a terrorist, antigovernmentgroup. Therefore, any support to the PKK, even on the moral level, led to tensions with theTurkish government, especially because the PKK was outlawed.

5. Through segregation analysis and goodness of fit tests, a six-generation extendedpedigree of 526 individuals showed that mesothelioma was genetically transmitted, proba-bly in an autosomal dominant way (Roushdy-Hammady et al. 2001).

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Department of Psychiatry and Behavioral SciencesDuke University Medical Center4323 Ben Franklin Boulevard, Suite 700Durham, NC 27704 USAe-mail: [email protected], [email protected]

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