At what point does a disease become a disease? Who, if anyone, is responsible for finding, creating, marketing and distributing a solution? Is there a risk that people will be wrongly convinced that they are sick? These questions underlie this week’s readings, which generally dealt, to varying extents, with notions of “disease mongering” and the social construction of disease as a problem in need of a solution. While it is not possible in this piece to analyse, deconstruct and consider how these questions are in play in all articles, the following summary will briefly highlight and touch upon the salient and ubiquitous issues among the articles as a whole by focusing on them severally.
I turn first to the Hacking piece, “Making Up People”*, which serves both as a refresher of the previous Hacking article (“The Looping Effects of Human Kinds”, Week 1) while also founding a theoretical base to consider these notions of disease construction and disease mongering. Hacking reminds us of the “looping effect”, whereby “our sciences create kinds of people that in a certain sense did not exist”, which he calls “making up people”. He considers notions of nominalization, which he sees as dynamic rather than static and how they intersect with a social and medical inclination to medicalise, biologise, geneticise. Revisiting his example of Multiple Personality Disorder, Hacking considers a five-part framework in which we can consider “human kinds”: (a) classification; (b) people; (c) institutions; (d) knowledge; (e) experts. The complex relationships and power dynamics that exist within this framework, such as notions of legitimacy and control, allow us to consider the construction of any number of examples, with different stories told in each instance.
Hacking then enters into a further discussion of Multiple Personality Disorder using this framework, followed by a discussion of Autism using the same ideas but to different ends. In both cases, Hacking examines how at one point in time “this [the disease in question] was not a way to be a person, people did not experience themselves in this way, they did not interact with their friends, their families; their employers; their counselors, in this way” but later in time “this way a way to be a person, to experience oneself, to live in a society”. Hacking follows this conclusion with a description and analysis of “ten engines of making up people”, in the same way that human sciences have engines that “are thought of as having to do with finding out the facts”. Indeed, the engines could have a significant amount of overlap. The ten engines that he describes are: count; quanitfy; create norms; correlate; medicalise; biologise; geneticise; normalise; bureaucratise; reclaim identity. The first seven deal with discovery and are ordered chronologically, the eighth is an engine of practice, the ninth of administration and the tenth of resistance. Hacking describes how all ten of these engines “produce effects on the kinds of people to whom they are applied”, and returns to his examples of obesity and autism to conclude this point. He invokes John Stuart Mill’s notions of natural kinds to discuss how autism may be considered a real kind, but obesity, like “white things” are a finite kind. These engines of making up people provide a sound basis for considering the other articles this week, as much of the phenomena Hacking describes are at play, and it will be helpful to keep them in mind when exploring the other articles.
Before considering the Fishman and Greene articles, I turn briefly to the four shorter pieces to frame some of the discussions. The Woloshin and Schwartz piece provides us with a handy definition of this underlying notion of disease mongering: “the effort by pharmaceutical companies (or others with similar financial interests) to enlarge the market for a treatment by convincing people that they are sick and need medical intervention” (452). They discuss Restless Legs Syndrome and how the media has served to increase the market for treatment in two ways: first, “by narrowing the definition of health so normal experiences get labeled as pathologic; and, second, by “expanding the definition of disease to include earlier, milder and presymptomatic forms” (452). These principles provide us a solid foundation, in combination with the premises proposed by Hacking, to consider constructions and marketing of disease as explored in the other pieces. Woloshin and Schwartz discuss and expose, as do the other articles for their respective diseases/syndromes, the underlying pharmaceutical interests and conflicts that exist in media discussion of Restless Legs. The table “Key Elements of Disease Mongering and How the Media Could Do Better” (453) outlines a number of “best practices” that could address a number of issues present in the Fishman article and is of particular note, although I am not convinced that it will find its way to the bulletin boards of the health editor’s desk of major media groups any time soon.
The Phillips article, “Medicine Goes to School: Teachers as Sickness Brokers for ADHD”, deals with a number of similar ethical issues that are at play in the Woloshin and Schwartz, although instead of journalists, they discuss the role of teachers. They argue that teachers “have a critical role in advocating for the illness [ADHD] and its medical treatment” (433). Like Woloshin and Schwartz, Phillips lists a number of “Suggestions to Support Teachers and Independent Advocates for Children with ADHD (434, Box 1). Underlying her claims throughout the article is the goal and recommendation that “teachers need to be supported to be objective and accurate interpreters of information for parents and healthworkers, rather than franchisees in the sickness marketplace” (435). Both the Healy and Alonso-Coello et al. pieces deal with similar threads as these previous two articles. Healy considers, in a more specific discussion about Bipolar Disorder as in the previous piece we encountered (“Shaping the Intimate: Influences on the Experiences of Everyday Nerves”), how “everyday behavioral difficulties may be better seen in terms of a disorder” (186) rather than recruiting patients who do have a disorder. Healy’s specific case of Bipolar Disorder, like Alonso-Coello et al.’s specific case of “pre-osteoporosis” provide the reader with concrete examples and discussion of “illnesses” that have been commodified, to a number of extents, to the point that they have created a significant number of “sick people” (who, of course, need to be treated with a drug) than may empirically (if we can imagine such a thing) exist. The backbone of all of these shorter snapshots of disease mongering is the need for all participants, from journalists and teachers who may be brokers, to patients, families and health-care workers, to be critical and analytical about the “diseases” in question.
As Jennifer Fishman discusses, however, the notion of being critical and analytical may not always be sufficient to avoid the myriad of bioethical conflicts of interest that exist within the pharmaceutical industry and that extend to all of its players. Fishman’s article is ostensibly about the “commodification of female sexual dysfunction”, although it focuses less on this particular commodification itself and focuses more on using it as an example of the multilateral relationships at play in the creation of disease (problem) and drug (solution). While she does note that “the relationships established between the FDA guidelines, clinical trial researchers and the pharmaceutical companies help to create a consumer market for a pharmaceutical product while also shaping ideas about normality, in this case normal sexuality” (194), this point is more of a passing one and does not form the crux of her argument. I think, though, that it is an essential unifying factor among all the articles, this notion of “normalcy”. There are concepts of normal childhood behaviour (Phillips), of normal sleep (Woloshin and Schwartz), of normal mood swings (Healy), of normal bone density (Alonso-Coello et al.) and of normal blood pressure (Greene).
What Fishman sets out to discuss in this article is to examine how “clinical trial researchers have elaborated new pathways between pharmaceutical companies and consumers through their activities in different fiends of action within drug development and marketing” (210). She uses the examples of conferences on Female Sexual Dysfunction research and the high profile media cases of Jennifer and Laura Berman, among other examples, to explore how there are complex relationships that exist from researchers relations and discussions with others. She argues that this is a network of “exchange relationships” rather than a “a one-way model of an actor enrolling others” (210) which has conventionally been discussed (188-189). Fishman contests that academics are not only the ones doing the researchers but, because of privatization and funding battles, they form an essential role in participating in other activities that promote the pharmaceutical agenda. She agrees that “conventional medical ethics is unequipped to deal with these questions” of conflicts of interest and working the system, whether intentionally or not.
Jeremy Greene’s article, “Releasing the Flood Waters: Diuril and the Reshaping of Hypertension”, is an extended and lengthy discussion of the development of hypertension as a disease in its own right (versus that of a symptom, in a similar way to cholesterol). It incorporates a number of the messages that are at play in the other articles this week, from an explicit invocation of Hacking’s concept of “looping kinds” (793) to a foundational notion of the “tried and true methods of advertising in medical journals and personal consultations [of physicians] with pharmaceutical representatives” (Fishman, 197). Greene takes us on a journey through the history of Diuril, as a specific drug “for hypertension” (although it started as a diuretic), but also of its importance in shaping contemporary ideas of hypertension and other chronic diseases. Greene’s discussion starts in the late 1940s, with a particular focus on the history of Diuril and hypertension in the 1950s and 1960s. Greene paints a fascinating picture of how the life of Diuril, using internal institutional documentation, public and private advertisements and contemporary medical journals, was one of a number of participants in a new age of pharmaceutical marketing. What is of notable importance here is that the complex, and not at all discrete, relationships between Diuril as a solution and hypertension as a problem (with, one could argue, the chronology of the relationship being just that) were foundational in the creation of the market of chronic disease and, as a result, chronic pharmaceutical consumption. Greene describes this as “an unforeseen interaction with hypertension launched [the pharmaceutical companies] into the business of producing agents for the prevention of heart disease, reflexive of a much broader shift in the primacy of daily chronic pharmacotherapy as the bread-and-butter underpinning of contemporary pharmaceutical and medical practice” (793). I think, then, that we can take Greene’s piece as a historical analysis of many of the phenomena, that Hacking describes in a more general way, that form the crux of a number of other issues explored up to and, I expect, beyond this point.
*Note that quotations from the Hacking piece do not have page numbers as a result of the format of the article