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DRUGS FOR LIFE
How Pharmaceutical Companies Define Our Health
By Joseph Dumit
Duke University Press
Copyright © 2012 Duke University Press
All right reserved.
ISBN: 978-0-8223-4860-3
Chapter One
Responding to Facts
"Oh, my God," Andy Grove invokes his deity in "Taking on Prostate Cancer," a cover article for the business magazine Fortune that narrates his arduous odyssey through the deeply troubled waters of prostate cancer research. Grove's freaked-out reaction is that of a rich businessman, the chief executive officer of the computer chip giant Intel and someone used to operating with facts in order to make decisions, who has found out that medical facts are very elusive and tricky creatures. Grove had just had his first test for prostate specific antigen (PSA), a screen that tracked this bodily substance and returned a number. In his case the result was 5 when "the acceptable range, according to the lab computer, was 0 to 4." In every description of a fact in his story Grove carefully attends to its context and its specificity: who says it, where, how, and with what degree of certainty. Here he notices that it is the lab computer that defines acceptable. Grove had not heard of the test, and he next records his doctor's new description of this result: "It's slightly elevated. It's probably nothing to worry about, but I think you should see a urologist."
I have chosen Grove's account in this article as exemplary of the expert patient. He is a smart, careful, resourceful, compliant, and eminently rational patient. He is fully empowered by patient and consumer movements to take charge of his health. In the end, though, he is also the ideal consumer from the point of view of treatment marketers. I analyze Grove's account for how it reveals the gaps in medical facts and in the circulation of knowledge that frustrate his attempt to find the best course of action. The ambiguity of medical facts is accentuated even more by another article in the same issue, in which one of Fortune's editors, Tom Alexander, describes facing a similar prognosis and choosing a diametrically opposite response: whereas Grove chooses aggressive radiation treatment, Alexander chooses to wait and see. Both men invoke mass health facts to justify their actions, seeing those same facts through different logics of action and different valences of risk. The openness of mass health to multiple interpretations is precisely the opening through which pharmaceutical companies step in and help shape the way in which we encounter these facts. And since the facts we encounter are the ones upon which we base our judgment as expert patients, controlling the circulation of facts turns out to be a marketing strategy.
Grove's article is a biography of how a fact becomes personally adopted and embodied. In reading Grove this way, I adopt a mode of analysis employed by the anthropologists Arjun Appadurai and Igor Kopytoff, who observed that a thing, say, a car, can be seen to go through many status changes, sometimes being a commodity, then a useful article, a priceless member of the family, then scrap metal. Using the analogy of a biography, Appadurai and Kopytoff proposed that analytic attention be paid to the social life of a thing. Grove, I suggest, offers a detailed account of the social life of a medical fact in the process of being incorporated into a person's life and of the person, in turn, coming to understand himself differently, objectively, and as a patient object of that fact. This dual process I have called objective self-fashioning to highlight the active participation of a person in incorporating this external redefinition of him-or herself.
An ambivalent directive often accompanies the first appearance of medical facts to a patient: be concerned but not worried. Grove is unprepared at this point, uninformed even as to the meaning of PSA. The thorny problem for the doctor, especially the primary care doctor, is one of introducing a possibility to a patient. In multiple ways he needs to inform his patient, which is more than just passing on information. Because of the test, Grove is possibly at risk for cancer, though his doctor avoids saying this. The doctor has a grammatical dilemma: he cannot state the fact of the test without erring emotionally too much or too little; he wants to alert Grove without alarming him and yet without implying he should ignore the alert. Technically, this doctor needs to produce in Grove just enough urgency to see another doctor. It is a question of emotional management: "It's probably nothing to worry about, but ..."
The patient is always in the position of trying to see past all of this indirection to the hidden truth of this management, asking himself, What does the doctor really think is wrong with me? Grove studies his doctor's comportment, makes a judgment, and relaxes: "He did not seem too concerned, so I didn't get anxious either. I put off the whole issue without too much thought." The doctor failed in alerting Grove, as his attempt at stating the fact was unsuccessful. This exchange of half hints and possible winks reveals the nightmare of doctors. No matter how neutral they try to be, in the face of presenting biomedical facts they will always be interpreted as advocating one action over another. Every statement of fact will be seen as an exercitive, a decision that compels other decisions. As much as they are supposed to allow patients to make decisions, doctors are the experts who know what the facts really mean. They know this dilemma all too well. One doctor I interviewed discussed the difficulty of "truly giving patients informed consent because of the complexity of decision making.... You have to inform the patient of what the risks are ... [but] you have to make sure that you don't allow the way you explain those risks to make the patient lean away from what you feel is a more appropriate therapy choice."
Medical anthropologists have defined this process of communicating what should be done through interpretive flexibility as therapeutic emplotment. The doctor puts the facts into a story that enables the patient to make sense of the facts, their significance, and the action that should be taken next. Grove's doctor seems to have decided to communicate nonchalance, and Grove got the message that he didn't really need to see an oncologist.
Biomedical facts are tipped toward action. While an elevated or unacceptable score may be nothing to worry about, it may also be something to worry about. Grove cannot leave this possibility alone. He "happened to tell one of [his] daughters, who is a healthcare professional" and who happened to know someone who happened to be writing an article on "the pros and cons of screening people with this very same PSA test." Biomedical narratives often have this serendipitous structure in which somebody encounters others who know more or finds a book or website with meaningful information. If one does not deny the connection, one is drawn into learning more. Grove cannot help wanting to learn more about his test result:
Would I want to talk to him about it? I would, I did.
Oh, my God.
With that conversation, I parachuted into the middle of one of the raging controversies of contemporary medicine.
God appears to mark the switch from the typical medical narrative of being tested, retested, diagnosed, and treated. Instead he was dropped into a war of interpretations. The foundation of Grove's knowledge shifts, and his picture of the medical world is changed. Though he does not explicitly continue either the war analogy or the world-changing one, he structures his entire narrative around them. As a person who has been screened, he is a soldier, a grunt who is parachuted into what increasingly appear to be the front lines of a battle over the production and dissemination of medical knowledge. The reason that even from the beginning he is so attentive to facts as specific material objects is that they turn out to be bullets shot by various parties at each other even while still being medical facts. These facts say something about how a person's symptoms and treatments bear on his chances for illness and recovery. Grove the patient was not supposed to be a soldier, and he does not see the point of being in a war at all.
A PSA test measures a bodily substance whose increase has been correlated with the occurrence and recurrence of prostate cancer. While many screens have false positives—that is, the test is positive, but the person does not have the disease—the main problem with the PSA test is that while it reliably helps identify prostate cancers (by indicating biopsies), the cancers it identifies may not be problems. Strange as it may sound, Grove learns from his daughter's friend that "autopsies show that half of all men who die of other causes have some cancerous tissue in their prostate." Whereas having cancer is normally connected with an image of suffering and dying from it, the implication of the autopsy findings is that 50 percent of the elderly male population has cancer but do not know it, and it does not matter. Perhaps it could be said that for these men cancer is not a disease.
Two separate measures here redefine disease at the same time. PSA tests individually inform more people, people who do not feel any symptoms, that they may have prostate cancer, and autopsy studies inform us, in general, that having prostate cancer may not be so bad. These two maybes do not cancel each other but collide and produce controversy. The person with a high PSA test embodies this controversy in multiple ways. As Grove writes, "Telling a person with an elevated PSA that he might have cancer leads him into a system of increasingly complex and uncomfortable diagnostic tests to ascertain whether it is so. If it is, the patient has to make some choices about what, if anything, to do."
Grove distinguishes here between his doctor, who told him only that his PSA was elevated, and his serendipitous friend, who informed him of the fact that this meant he might have cancer. The difference is not about what Grove has but about what Grove learns he may have. Hearing the personal fact leads him (or anyone) into a system of tests. Narratively, he has been emplotted into a new narrative, one that has reconfigured his possibilities and placed new challenges and goals before him.
Grove also cannot go back to a state of ignorance. Having personalized this biomedical knowledge changes who he is. The factual possibility that he is suffering from cancer has been introduced into him. Was he at risk before the test? Certainly afterward he was. Being at risk is a relation to a fact, an enacted fact. He is at risk; he has been informed. He is led to undergo tests, and, if they are positive, he has to make choices. The researcher who informed him is concerned with this inevitability. He feels that too many men will test positive and be led to tests and treatments that have unpleasant consequences. Men who may have lived with no symptoms at all will now face side effects that are themselves life changing, including impotence and incontinence. (I will investigate the issue of the consequences of screening in chapter 5.) But Grove has already had the test, and the researcher's specific concerns are therefore academic. Faced with his own facts, Grove must continue.
Knowing that one is possibly at risk leads to tests and more tests; answers raise more questions. Knowing that the tests and diagnoses are controversial leads to investigation and more investigation. Each kind of knowledge produces more needs and more action. Having money and free time, Grove conducts internet research. He accesses Compuserve and locates a prostate cancer forum full of discussions of PSA tests, treatments, and side effects. He begins to read technical articles and popular health books. When the facts do not correlate with each other, he forms hypotheses that may explain the apparent discrepancies. In short, he begins to become a lay expert: an expert on prostate cancer as it pertains to himself. He makes the knowledge personal. He learns the possible size of his cancer (if it exists): "I visualized a sugar-cube-sized tumor inside me, and I shuddered."
Controversies are fascinating social processes because they make apparent all of the normally silent and hidden activities that regularly produce our taken-for-granted everyday world. While we usually may be justified in assuming that something called the scientific community has come to conclusions that inform our doctor's assessment of us, a controversy shows us the competing, fractious voices; contradictory facts; and uncertain compromises that are the world of knowledge production. Sociologists of science have looked to controversies as opportunities in which to make manifest the work of maintaining the taken-for-granted everyday by many different groups of people and institutions.
In a controversy, the apparatus of knowledge production also becomes highlighted as concealing assumptions that must now be interrogated for their potential role in helping to settle matters. Grove punctuates his narrative with apparent facts and then wonders if there may be problems with how the data were collected, how the studies were analyzed, and how the instruments were calibrated. In each case he sees these assumptions from his position on the front lines. If, he wonders, the discovery of postmortem prostate cancer is owing to the fact that mostly older men are being screened, then this might explain the high rate, but it would not help him, Grove, who is still "only 58 and otherwise in perfect health." He wonders also about the accuracy of the PSA test: how often does it return a 5 when one's real score may be 4? How many false positive PSA scores does it produce? His future depending on the answer, he wrote, "I decided to test the tests. I had my blood sent to two different labs." Unfortunately for Grove, the tests were precise enough (6.0 and 6.1), and his cancer appeared to be growing. He finally sees a urologist and has a biopsy. He is told he has cancer.
He also has a new relationship to medical facts. All of these investigations took place while he was on sabbatical writing a book that would eventually be called Only the Paranoid Survive. While the content of the book refers to keeping a technology business afloat in a rapidly changing information society, the title could equally well refer to how to be a successful patient in biomedical society. In becoming aware of the controversial and unsettled nature of facts about his illness, Grove becomes paranoid in a most rational manner. He will suspect all facts by seeing them as rhetorical phrases aimed at him by specific individuals or institutions, crafted to produce effects in him and on him. While this is paranoid, it is in fact a good description of how scientists regularly understand their field: as competitive, biased, and divided by opposing assumptions and conventions. One good description of scientific method is to suspect everything as a means of discovering what had to be taken for granted before and can now be improved upon. Science is similar to business in that competition and suspicion are good, and monopolies and complacency are bad. Grove must therefore become a lay sociologist of scientific knowledge, understanding not only the basic facts of the field, including current studies and their weaknesses, but also mapping the larger institutional forces that structure what kinds of questions are not asked and what strategies are ignored and why. Again, his status as lay expert becomes a precise job description: whereas a sociologist of scientific knowledge would study a controversy for what it reveals about the ways science works and how knowledge comes into being, Grove needs to know how science works in order to settle the controversy for himself. His clock ticking, he needs to make decisions based, at the very least, on an accurate assessment of the true kinds of uncertainty and bias that inhabit his facts.
Having discussed his diagnosis and his reaction to it, Grove heads the next section of his article "R&D," underscoring how sensitized he has become to the uncertainty of his facts and of the answers given by his urologist. Once he has read online accounts of bad side effects and other problems with treatments, expertise and emotional management backfire: "He walked me through the complications of surgery, but reassured me: 'Don't worry, we can do something about each of those.' The examining room walls were covered with posters of contraptions like penile implants and vacuum pumps. I knew that they were devices meant to restore potency, but they evoked images of medieval torture."
Grove is equally suspicious of the sensitivity of scanning tests. He no longer accepts facts; he must learn what they mean for him by learning how they are used: "I wanted to know more." Having ample resources and time at his disposal, this is possible. He becomes a complete lay sociologist of scientific knowledge: "I also decided to dust off my research background and go directly to the original literature.... My wife got copies of these articles from Stanford. My life entered a new routine.... By day, I set up appointments.... By night, I read scientific papers, plotting and cross-plotting the data from one paper with the results from another.... This whole exercise reminded me of my younger days, when I did the same thing in the field of semiconductor devices."
Grove embarks on an odyssey akin to an investment strategy. A sociologist is never satisfied with claims made, no matter how objective they appear. He is interested in how a claim was crafted and how the appearance of objectivity was staged. Attending closely to the materiality of facts, Grove discovers three central aspects that I summarize as follows: facts are contextual, facts are changeable, and facts are maintained. Stated so baldly, these discoveries are obvious; their power lies in the details of how these aspects change Grove's way of looking at the world. Having become suspicious of facts in the world, he nonetheless clings to truth, to the idea that with proper collection, assessment, and analysis of facts in the world he can come to the best decision for himself.
(Continues...)
Excerpted from DRUGS FOR LIFE by Joseph Dumit Copyright © 2012 by Duke University Press. Excerpted by permission of Duke University Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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