Joanna Kempner

Undone Science: Charting Social Movement and Civil Society Challenges to Research Agenda Setting

‘‘Undone science’’ refers to areas of research that are left unfunded, incomplete, or generally ignored but that social movements or civil society organizations often identify as worthy of more research. This study mobilizes four recent studies to further elaborate the concept of undone science as it relates to the political construction of research agendas. Using these cases, we develop the argument that undone science is part of a broader politics of knowledge, wherein multiple and competing groups struggle over the construction and implementation of alternative research agendas. Overall, the study demonstrates the analytic potential of the concept of undone science to deepen understanding of the systematic nonproduction of knowledge in the institutional matrix of state, industry, and social movements that is characteristic of recent calls for a ‘‘new political sociology of science.’’

The Stigma of Migraine

Background People who have a disease often experience stigma, a socially and culturally embedded process through which individuals experience stereotyping, devaluation, and discrimination. Stigma has great impact on quality of life, behavior, and life chances. We do not know whether or not migraine is stigmatizing. Methods We studied 123 episodic migraine patients, 123 chronic migraine patients, and 62 epilepsy patients in a clinical setting to investigate the extent to which stigma attaches to migraine, using epilepsy as a comparison. We used the stigma scale for chronic illness, a 24-item questionnaire suitable for studying chronic neurologic diseases, and various disease impact measures. Results Patients with chronic migraine had higher scores (54.0±20.2) on the stigma scale for chronic illness than either episodic migraine (41.7±14.8) or epilepsy patients (44.6±16.3) (p<0.001). Subjects with migraine reported greater inability to work than epilepsy subjects. Stigma correlated most strongly with the mental component score of the short form of the medical outcomes health survey (SF-12), then with ability to work and migraine disability score for chronic and episodic migraine and the Liverpool impact on epilepsy scale for epilepsy. Analysis of covariance showed adjusted scores for the stigma scale for chronic illness were similar for chronic migraine (49.3; 95% confidence interval, 46.2 to 52.4) and epilepsy (46.5; 95% confidence interval, 41.6 to 51.6), and lower for episodic migraine (43.7; 95% confidence interval, 40.9 to 46.6). Ability to work was the strongest predictor of stigma as measured by the stigma scale for chronic illness. Conclusion In our model, adjusted stigma was similar for chronic migraine and epilepsy, which were greater than for episodic migraine. Stigma correlated most strongly with inability to work, and was greater for chronic migraine than epilepsy or episodic migraine because chronic migraine patients had less ability to work.

The Chilling Effect: How Do Researchers React to Controversy?

Background Can political controversy have a “chilling effect” on the production of new science? This is a timely concern, given how often American politicians are accused of undermining science for political purposes. Yet little is known about how scientists react to these kinds of controversies. Methods and Findings Drawing on interview (n = 30) and survey data (n = 82), this study examines the reactions of scientists whose National Institutes of Health (NIH)-funded grants were implicated in a highly publicized political controversy. Critics charged that these grants were “a waste of taxpayer money.” The NIH defended each grant and no funding was rescinded. Nevertheless, this study finds that many of the scientists whose grants were criticized now engage in self-censorship. About half of the sample said that they now remove potentially controversial words from their grant and a quarter reported eliminating entire topics from their research agendas. Four researchers reportedly chose to move into more secure positions entirely, either outside academia or in jobs that guaranteed salaries. About 10% of the group reported that this controversy strengthened their commitment to complete their research and disseminate it widely. Conclusions These findings provide evidence that political controversies can shape what scientists choose to study. Debates about the politics of science usually focus on the direct suppression, distortion, and manipulation of scientific results. This study suggests that scholars must also examine how scientists may self-censor in response to political events.

Uncovering the Man in Medicine Lessons Learned from a Case Study of Cluster Headache

Cluster headache is a notoriously painful and dramatic disorder. Unlike other pain disorders, which tend to affect women, cluster headache is thought to predominantly affect men. Drawing on ethnography, interviews with headache researchers, and an analysis of the medical literature, this article describes how this epidemiological “fact”—which recent research suggests may be overstated—has become the central clue used by researchers who study cluster headache, fundamentally shaping how they identify and talk about the disorder. Cluster headache presents an extreme case of medicalized masculinity, magnifying the processes of gendering and bringing into relief features of the world whose routine operation we might otherwise overlook.

Naming Migraine and Those Who Have It

Medical language has implications for both public perception of and institutional responses to illness. A consensus panel of physicians, academics, advocates, and patients with diverse experiences and knowledge about migraine considered 3 questions: (1) What is migraine: an illness, disease, syndrome, condition, disorder, or susceptibility? (2) What ought we call someone with migraine? (3) What should we not call someone with migraine? Although consensus was not reached, theresponses were summarized and analyzed quantitatively and qualitatively. Panelists participated in writing and editing the paper. The panelists agreed that “migraine,” not “migraine headache,” was generally preferable, that migraine met the dictionary definition for each candidate moniker, terms with psychiatric valence should be avoided, and “sufferer” should be avoided except in very limited circumstances. Overall, while there was no consensus, “disease” was the preferred term in the most situations, and illness the least preferred. Panelists disagreed strongly whether one ought to use the term “migraineur” at all or if “person with migraine” was preferable. Panelists drew upon a variety of principles when considering language choices, including the extent to which candidate monikers could be defended using biomedical evidence, the cultural meaning of the proposed term, and the context within which the term would be used. Panelists strove to balance the need for terms to describe the best science on migraine, with the desire to choose language that would emphasize the credibility of migraine. The wide range of symptoms of migraine and its diverse effects may require considerable elasticity of language.

What Biology Can't Do.

I was relieved to learn I had a brain disorder. I made the discovery by accident when, in 2000, a local radio show asked a well-known headache specialist to speak on migraine. He started with a familiar if frustrating narrative. “We used to believe that migraine was a disorder of neurotic women, whose blood vessels dilated and they couldn’t face up to life.” But I jumped out of my seat when he continued, “We now know that migraine is a disorder of the brain.” Was this medical expert finally confirming that migraine was a “real” disorder? However, the first listener calling into the show deflated my spirits. He had migraine and now he worried that this indicated something seriously wrong with his brain. His sensible anxiety highlighted the irony of my position. How did I arrive at a point where I delighted in the diagnosis of a neurobiological disease? And, more importantly, why was I so certain that having an identified biological problem would make my pain and suffering real to other people? Certainly, validation had been a long time coming. When I was age five, a pediatrician diagnosed my recurring headaches as a symptom of a “Type A personality.” When I was 18, a psychologist suggested that my migraines were brought on by the stress of not having a boyfriend. Just a few years before the radio broadcast, an allergist had prescribed yoga for my pain. “You just need to breathe.” Yoga may be generally beneficial to health, but the suggestion felt dismissive when given without so much as a diagnosis. Was I just a hypochondriac? Nobody could explain why something as banal as a “headache” kept me in bed all day. So, while I lived with chronic pain, in retrospect, it was this pervasive sense of shame that created my most acute suffering. Migraine affects between 10–12% of the world’s adult population, three-quarters of whom are women. A nontrivial additional portion of the population (between 1 and 4% of adults, worldwide) have chronic migraine and experience headache days more often than they don’t. People with migraine often miss work, underperform at their jobs, struggle to care for their families, and neglect social obligations. The social and economic consequences of migraine are so overwhelming that the WHO’s 2010 Global Burden of Disease survey estimated that migraine is the 8th leading cause of disability worldwide. And yet migraine patients consistently report that everyone – from doctors and employers to friends and family – has trouble accepting that something that seems like a common nuisance, From the Department of Sociology, Institute of Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, NJ, USA.