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Abstract

The social construction of illness is a major research perspective in medical sociology. This article traces the roots of this perspective and presents three overarching constructionist findings. First, some illnesses are particularly embedded with cultural meaning—which is not directly derived from the nature of the condition—that shapes how society responds to those afflicted and influences the experience of that illness. Second, all illnesses are socially constructed at the experiential level, based on how individuals come to understand and live with their illness. Third, medical knowledge about illness and disease is not necessarily given by nature but is constructed and developed by claims-makers and interested parties. We address central policy implications of each of these findings and discuss fruitful directions for policy-relevant research in a social constructionist tradition. Social constructionism provides an important counterpoint to medicine’s largely deterministic approaches to disease and illness, and it can help us broaden policy deliberations and decisions.

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In contrast to the medical
model, which assumes that diseases are universal
and invariant to time or place, social constructionists
emphasize how the meaning and experience of
illness is shaped by cultural and social systems.
In short, illness is not simply present in nature, waiting
to be discovered by scientists or physicians. As
Gusfield (1967) notes, “Illness is a social designation,
by no means given in the nature of medical
fact” (p. 180). There are, of course, biophysiological
bodily conditions or naturally occurring events,
but these aren’t ipso facto illnesses. Neither are
they ipso facto diseases. The disease side of the
disease/illness conceptual distinction is also ripe
for social constructionist analysis, insofar as what
gets labeled a disease or qualifies as biological is
often socially negotiated.

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Medical Knowledge as Socially Constructed
The research of medical sociologists in the
subfield of science studies also reveals how medical
knowledge is conditioned by the social context
in which it is developed. Specifically, these scholars
explain that what qualifies as biological disease
or biomedical evidence is often socially negotiated
and interpreted (Joyce 2008; Timmermans 2007).
Steven Epstein’s work is exemplary of this type of
research. In a recent book Epstein (2007) analyzes
the emergence, beginning in the mid-1980s, of a
new paradigm of biomedical research that proactively
included individuals from underrepresented
social groups (e.g., women and racial and ethnic
minorities) in clinical studies, with an eye toward
understanding the differences between groups with
respect to disease processes and treatment outcomes.
Even as this new paradigm offers potential
tools for addressing nagging questions about health
disparities—e.g., why do black women with breast
cancer have higher mortality rates than their white
counterparts?—it has the consequence of reifying
the categories of race and gender as biological
realities. But, by showcasing how a number of different
interest groups and institutional players
(e.g., feminist activists, advocates for racial and
minority groups, and various cadres of bureaucrats)
pushed for this new research paradigm,
Epstein explains how the knowledge it produces
about race and gender are in part the outcome of
social and political conflicts and negotiations, as
opposed to essential truths found in nature. In an
earlier book, Epstein (1996) similarly underscored
the politics of knowledge by demonstrating how
the science regarding the cause and treatment of
HIV/AIDS is best understood as an amalgam that
was constructed and contested by different constituencies
(e.g., scientists, doctors, drug companies,
patients, and activists) rather than the outcome
of “pure” science.
Also under the general theme of the social construction
of medical knowledge is the influential
work on medicalization. Medicalization occurs
when human problems or experiences become
defined as medical problems, usually in terms of
illnesses, diseases, or syndromes. In general, sociologists
who study medicalization emphasize the
processes by which a particular diagnosis is developed,
becomes accepted as medically valid, and
gets used to define and treat patients’ problems.
Sociologists have described many different types
of problems and experiences that have come to be
defined and treated medically. Early studies
focused on the medicalization of deviance, including
madness, drug and alcohol problems, and
homosexual behavior (Conrad and Schneider
1992). Over the years, sociologists have shown
that women’s natural reproductive functions (e.g.,
pregnancy, childbirth, menstruation) are routinely
medicalized (Barker 1998; Riessman 1983; Riska
2003). For example, Prempro, a widely prescribed
hormone replacement drug, is just the latest in the
ongoing effort to medically “treat” menopausal
“symptoms,” despite the fact that changes associated
with menopause are a common and ordinary
aspect of women’s reproductive lives.
In recent years sociologists have focused on the
medicalization of ordinary life events, risk, and
“proto illnesses,” as well as individuals’ perceived
shortcomings and their desire for enhancements,
e.g., improved sexual performance (Conrad 2007).
Likewise, the engines of medicalization have
expanded beyond medical professionals, social
movements, and organizations to biotechnology,
consumers, and the insurance industry. There is
increasing evidence that commercial aspects of
medicine, especially the pharmaceutical industry,
are increasingly important in the shaping and disseminating
of medical knowledge to promote their
products. There are now important case studies on
female sexual dysfunction (Hartley 2006), menopause
(Bell 1990), mild depression (Horwitz and
Wakefield 2007), sleep disorders (Williams 2005),
and many other problems. The case of erectile
dysfunction is telling (Loe 2004). In the late 1990s
male impotence was renamed “erectile dysfunction”
(ED), and in 1998 the FDA approved Viagra
for its treatment. The drug was intended for older
men with chronic erectile problems and for ED
associated with prostate cancer, diabetes, and other
medical conditions. Pfizer, the drug manufacturer,
soon began promoting the drug to a much larger
audience. Using television commercials featuring
virile and relatively young professional athletes,
Pfizer presented Viagra as benefiting any man,
regardless of age. When newer competitor drugs
such as Cialis and Levitra came on the scene they
were widely advertised as not only treating ED,
but as useful for anyone who worried about or
wanted to enhance their (or their partner’s) sexual
experience (e.g., “Cialis is ready when you are”).
Both the boundaries of the ED diagnosis and the
markets for ED drugs expanded enormously
(Conrad 2007).

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Policy Implications of Medical Knowledge as
Socially Constructed

For sociologists, one of the most troubling
results of medicalization is that it encourages medical
solutions while ignoring or downplaying the
social context of complicated problems (Lantz,
Uchtenstein, and Pollack 2007). It seems that we
have a social predilection toward treating human
problems as individual or clinical—whether it be
obesity, substance abuse, learning difficulties,
aging, or alcoholism—rather than addressing the
underlying causes for complex social problems and
human suffering. We are quick to see individualized
medical interventions as logically consistent
responses to our troubles (see Conrad and Schneider
1992). However, medicalization research forces us
to recognize both the origin and limitation of clinical
and medical accounts. In so doing, we can be
more skeptical of quick, medicalized fixes for what
are really complex, multifaceted social problems.
Finally, medicalization itself raises concerns
about the possibility of meaningful health care
reform. Creating an ever larger jurisdiction of
medical problems that are subject to potential
insurance or public reimbursement may be a serious
impediment to providing comprehensive and
universal health care coverage. What is comprehensive
coverage in the context of the successful
commercialization of “elective” medicine, as in
the case of cosmetic surgery or anti-aging medicine?
Is it possible to provide universal coverage
given our cultural predisposition for “a pill for
every ill,” amplified by the pharmaceutical industry’s
promotion of an “ill for every pill” (Mintzes
2002:909)? Are there are any limits to what can be
medicalized, or are all human problems and variations
in socially desirable characteristics fodder for
medical diagnoses and treatments? In sum, the fiscal
costs of run-away medicalization may significantly
impede any effort to reform health care
(Conrad, Mackie, and Mehrotra, 2010).

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In 1962 a new historiography-of-science emerged with Thomas Kuhn's The Structure of Scientific Revolutions, first published as part of the "Foundations of the Unity of Science" series. In his book, Kuhn outlined a revolutionary model of scientific change and examined the role of the scientific community in preventing and then accepting change. Kuhn's conception of scientific change occurring through revolutions undermined the traditional scientific goal, finding "truth" in nature.

Kuhn's notion of scientific progress rested upon his concept of a paradigm: the common terminology and basic theories of a scientific community and that community's fundamental assumptions about methodology and what questions a scientist can legitimately ask. Textbooks inform scientists-to-be about this common body of knowledge and understanding. Scientific research necessarily takes place within a paradigm, for the world is too huge and complex to be explored randomly. Within a paradigm, a scientist knows what facts are relevant and can build on past research. Those who deviate from the dominant paradigm are not scientists at all; the scientific community considers them to be chasing superstitions.

During "normal science," research that occurs within a paradigm, scientists are busy "puzzle solving," an activity conducted to "add to the scope and precision with which the paradigm can be applied." [26] The scientist's research is like solving a puzzle because the scientist, guided by the paradigm, asks questions that can be answered and that have an easily recognizable solution. The paradigm thus shapes both the questions and the answers.

(26)Normal science, as defined by Kuhn, is cumulative. New knowledge fills a gap of ignorance. But normal science does not permit for advancement by means of revolutionary theories. As Kuhn pointed out, "one standard product of the scientific enterprise is missing. Normal science does not aim at novelties of fact or theory and, when successful, finds none." [27] However, normal science does contain a mechanism that uncovers anomaly, inconsistencies within the paradigm. Because normal science has precision as its goal, it focuses on details; eventually, details arise that are inconsistent with the current paradigm. In most cases, these inconsistencies are eventually resolved or are ignored. However, if the inconsistent details significantly threaten a paradigm, perhaps because they concern a topic of central importance, a crisis occurs and normal science comes to a halt. Such a crisis requires that the scientists re-examine the foundations of their science that they had been taking for granted.

During a crisis, alternate paradigms are proposed, usually by scientists who are young or new to the field and thus more open-minded. Slowly, one of the alternate paradigms triumphs over the competing paradigms for several possible reasons: it resolves the crisis better than the others, it offers promise for future research, and it is more aesthetic than its competitors. The reasons for converting to a new paradigm are never completely rational. Because different paradigms justify themselves with their own terms, one must actually step into a paradigm to understand it. Kuhn even used the word 'faith' to describe a conversion. As the scientific community is converted to the new paradigm, normal science begins anew under a new set of basic assumptions. The converted scientists, argued Kuhn, did not merely reinterpret old data in new ways, but rather "work[ed] in a different world" [28] after their conversion.

Kuhn departed from traditional evolutionary views with his argument that a new paradigm with its new foundation is "incommensurable" with the old paradigm. Unlike evolutionary science, in which new knowledge fills a gap of ignorance, in Kuhn's model new knowledge replaces incompatible knowledge. Thus science is not a continuous or cumulative endeavor: when a paradigm shift occurs there is a revolution similar to a political revolution, with fundamental and pervasive changes in method and understanding. Each successive vision about the nature of the universe makes the past vision obsolete; predictions, though more precise, remain similar to the predictions of the past paradigm in their general orientation, but the new explanations do not accommodate the old.

Kuhn argued against scientific realism. Each new paradigm increases predictive accuracy, but scientists have no reason to believe that the accuracy of explanation is closer to corresponding to what is "really there." He saw that the reason that one paradigm survives and another dies is because one solves puzzles better, not because it is a more accurate representation of reality:

(27)

A scientific theory is usually felt to be better than its predecessors not only in the sense that it is a better instrument for discovering and solving puzzles but also because it is somehow a better representation of what nature is really like. One often hears that successive theories grow ever closer to, or approximate more and more closely to, the truth. Apparently generalizations like that refer not to the puzzle-solutions and the concrete predictions derived from a theory but rather to its ontology, to the match, that is, between the entities with which the theory populates nature and what is "really there. " [29]
When he looked at history, Kuhn believed that he could "design a list of criteria that would enable an uncommitted observer to distinguish the earlier from the more recent theory time after time," [30] but this list would include nothing about approaching truth.

Judging from the history of science, Kuhn believed that it was "implausible" to say that theory is approaching truth. There is no linear advancement of theory toward truth:

Newton's mechanics improves on Aristotle's and ... Einstein's improves on Newton's as instruments for puzzle-solving. But I can see in their succession no coherent direction of ontological development. On the contrary, in some important respects, though by no means in all, Einstein's general theory of relativity is closer to Aristotle's than... to Newton's. [31]
According to Kuhn, Einstein's theory is not merely a more complex version of Newton's. Einsteinian theory heads in its own direction; there is "no coherent direction of ontological development." This statement embodies, and indeed follows from, the idea of "Revolution" for which Kuhn argued.

In the closing chapter of his book, Kuhn proposed the need for a goal to guide science to replace the idea of progressing toward the truth:

The development process described in this essay has been a process of evolution from primitive beginnings-a process whose successive stages are characterized by an increasingly detailed and refined understanding of nature. But nothing that has been or will be said makes it a process of evolution toward anything.... We are all deeply accustomed to seeing science as the one enterprise that draws constantly nearer to some goal set by nature in advance. [32]
Kuhn thus argued against the notion of science as an activity approximating more and more closely the truth in nature. With his suggestion that human beings are forever separate from truth, Kuhn implied that truth does not guide science and thus removed from science the teleological goal of finding truth. (28)Truth cannot be observed and therefore cannot be leading scientists to better puzzle solving. Kuhn explained away truth using the analogy of Darwin's theory of evolution: "the entire process may have occurred, as we now suppose biological evolution did, without the benefit of a set goal, a permanent fixed scientific truth, of which each stage in the development of scientific knowledge is a better exemplar." [33] Science is not pulled forward by truth; science is propelled forward by the puzzles solved during normal science. As McMullin explained Kuhn's theory, as more puzzles are solved, scientists are not led to "a new level of understanding," but to "an illusion of understanding." [34] The "illusion of understanding" that Kuhn implied threatens traditional scientific rationality, for "illusion" is not at all what Newton and the logical empiricists believed to be the product of science. [35]

Kuhn issued a challenge to scientific realism and to scientific rationality itself. His theory raised many questions about the rationality of science that have been feeding a lasting controversy. The challenges facing scientific realism-the idea that guided modern science from its beginnings in the scientific revolution until the twentieth century-are such that it will probably never be restored. In a sense, we have circled back to the ancient and medieval practice of separating scientific theory from physical reality; both medieval scientists and Kuhn would agree that no theory corresponds to reality and therefore any number of theories might equally well explain a natural phenomenon. [36] Neither twentieth-century atomic theorists nor medieval astronomers are able to claim that their theories accurately describe physical phenomena. The inability to return to scientific realism suggests a tripartite division of the history of science, with a period of scientific realism fitting between two periods in which there is no insistence that theory correspond to reality. Although both scientific realism and the evolutionary idea of scientific progress appeal to common sense, both existed for only a few hundred years.