Cultural reflexivity in health research and practice.

Recent public health movements have invoked cultural change to improve health and reduce health disparities. We argue that these cultural discourses have sometimes justified and maintained health inequalities when those with power and authority designated their own social practices as legitimate and healthy while labeling the practices of marginalized groups as illegitimate or unhealthy. This "misrecognition," which creates seemingly objective knowledge without understanding historical and social conditions, sustains unequal power dynamics and obscures the fact that what is deemed legitimate and healthy can be temporally, geographically, and socially relative. We use examples from research across multiple disciplines to illustrate the potential consequences of cultural misrecognition, highlight instances in which culture was invoked in ways that overcame misrecognition, and discuss how cultural reflexivity can be used to improve health research and practice.

From skid row to Main Street: the Bowery series and the transformation of prostate cancer, 1951-1966.

Between 1951 and 1966, more than twelve hundred homeless, alcoholic men from New York's skid row were subjected to invasive medical procedures, including open perineal biopsy of the prostate gland. If positive for cancer, men typically underwent prostatectomy, surgical castration, and estrogen treatments. The Bowery series was meant to answer important questions about prostate cancer's diagnosis, natural history, prevention, and treatment. While the Bowery series had little ultimate impact on practice, in part due to ethical problems, its means and goals were prescient. In the ensuing decades, technological tinkering catalyzed the transformation of prostate cancer attitudes and interventions in directions that the Bowery series' promoters had anticipated. These largely forgotten set of practices are a window into how we have come to believe that the screen and radical treatment paradigm in prostate cancer is efficacious and the underlying logic of the twentieth-century American quest to control cancer and our fears of cancer.

"Screening" for prostate cancer in New York's skid row: history and implications.

The Bowery series, open perineal biopsies performed on more than 1200 alcoholic men recruited from homeless shelters in New York City's Bowery section, began in 1951 and persisted for more than a decade. If frozen sections revealed prostate cancer, men typically underwent radical perineal prostatectomy, orchiectomy, and diethylstilbestrol treatment. This poorly informed, vulnerable population was subjected to health risks that investigators knew others would not accept. Although the knowledge produced had little impact on practice, the Bowery practices foreshadowed and have troubling continuities with later developments. Currently, more than a million American men each year undergo prostatic biopsies. But the efficacy of prostate-specific antigen screening and the treatment that typically follows has never been established. The Bowery series and subsequent developments are part of one continuous story of how medical and lay people came to believe in the efficacy of population screening followed by aggressive treatment without solid supporting scientific evidence.

The rise and fall of the lyme disease vaccines: a cautionary tale for risk interventions in American medicine and public health.

CONTEXT: Two vaccines to prevent Lyme disease (LD) were developed and tested in the 1990s. Despite evidence of their safety and efficacy in clinical trials and initial postmarketing surveillance, one vaccine was withdrawn before the regulatory review and the other after only three years on the market. An investigation of their history can illuminate (1) the challenges faced by many new risk-reducing products and practices and (2) the important role played by their social and psychological, as distinct from their biomedical or scientific, efficacy in how they are used, and their ultimate market success or failure. METHODS: This article reviewed medical and popular literature on LD vaccines, analyzed the regulatory hearings, and conducted interviews with key participants. FINDINGS: Even if proved safe and effective, LD vaccines faced regulatory and market challenges because the disease was geographically limited, treatable, and preventable by other means. Pharmaceutical companies nevertheless hoped to appeal to consumers' desire for protection and control and to their widespread fear of the disease. The LD advocacy community initially supported the vaccines but soon became critical opponents. The vaccines' success was seen as threatening their central position that LD was chronic, protean, and difficult to treat. The activists' opposition flipped the vaccines' social and psychological efficacy. Instead of the vaccines restoring control and reducing fear, demand was undermined by beliefs that the vaccines caused an LD-like syndrome. CONCLUSIONS: The social and psychological efficacy of many risk-reducing practices and products, such as new "personalized vaccines," is to provide insurance and reduce fear. Yet the actions of self-interested actors can easily undermine this appeal. In addition to evaluating the scientific efficacy and safety of these practices and products, policymakers and others need to understand, anticipate, and perhaps shape the potential social and psychological work they might do.

The converged experience of risk and disease.

CONTEXT: One underappreciated consequence of modern clinical and public health practices is that the experience of being at risk for disease has been converging with the experience of disease itself. This is especially true for certain chronic diseases, in which early diagnosis and aggressive treatment have led to symptom-less and sign-less disease and in which treatments have largely been aimed at altering the disease's future course. METHODS: This article reviews the historical scholarship and medical literature pertinent to transformations in the chronic disease and risk experiences. FINDINGS: The experience of chronic disease increasingly resembles or has become indistinguishable from risk because of (1) new clinical interventions that have directly changed the natural history of disease; (2) increased biological, clinical, and epidemiological knowledge about the risk of chronic disease; (3) the recruitment of larger numbers into chronic disease diagnoses via new screening and diagnostic technology and disease definitions; (4) new ways of conceptualizing efficacy; and (5) intense diagnostic testing and medical interventions. CONCLUSIONS: The converged experience of risk and disease has led to some unsettling and generally underappreciated consequences that might be subjected to more clinical and policy reflection and response: (1) some puzzling trends in medical decision making, such as the steep and uniform increase in the numbers of women across a broad spectrum of risk/disease in breast cancer who have opted for prophylactic mastectomies; (2) a larger and highly mobilized disease/risk population, resulting in an expanded market for interventions and greater clout for disease advocates; (3) shifts in the perceived severity of the disease, with ripple effects on how people experience and understand their illness and risk of disease; and (4) interventions that promise both to reduce the risk of disease and to treat its symptoms.

Framing disease: an underappreciated mechanism for the social patterning of health.

The emerging fields of social epidemiology and population health seek to understand the social determinants of health. Especially, with regards to how income inequality causes health disparities, attention has been focused on material and psychosocial mechanisms. I use examples from the epidemiological and social science literature to argue for a third broad etiological framework: the role played by the ways we generally recognize, define, name, and categorize disease states and attribute them to a cause or set of causes. These framing effects shape population health by influencing: health and illness beliefs; patterns of consumption and other behaviors; perceptions of what interventions and policies work; class, ethnic, and other social dynamics; and clinical and public health practices. Important characteristics of many framing phenomena are their capacity to be self-perpetuating and their performative power. A better understanding of framing effects can lead to deploying them more deliberatively and flexibly to improve individual and population health.

Hormone replacement therapy, cancer, controversies, and women's health: historical, epidemiological, biological, clinical, and advocacy perspectives.

Routine acceptance of use of hormone replacement therapy (HRT) was shattered in 2002 when results of the largest HRT randomised clinical trial, the women's health initiative, indicated that long term use of oestrogen plus progestin HRT not only was associated with increased risk of cancer but, contrary to expectations, did not decrease, and may have increased, risk of cardiovascular disease. In June 2004 a group of historians, epidemiologists, biologists, clinicians, and women's health advocates met to discuss the scientific and social context of and response to these findings. It was found that understanding the evolving and contending knowledge on hormones and health requires: (1) considering its societal context, including the impact of the pharmaceutical industry, the biomedical emphasis on individualised risk and preventive medicine, and the gendering of hormones; and (2) asking why, for four decades, since the mid-1960s, were millions of women prescribed powerful pharmacological agents already demonstrated, three decades earlier, to be carcinogenic? Answering this question requires engaging with core issues of accountability, complexity, fear of mortality, and the conduct of socially responsible science.

Unexplained symptoms after terrorism and war: an expert consensus statement.

Twelve years of concern regarding a possible "Gulf War syndrome" has now given way to societal concerns of a "World Trade Center syndrome" and efforts to prevent unexplained symptoms following the most recent war in Iraq. These events serve to remind us that unexplained symptoms frequently occur after war and are likely after terrorist attacks. An important social priority is to recognize, define, prevent, and care for individuals with unexplained symptoms after war and related events (eg, terrorism, natural or industrial disasters). An international, multidisciplinary, and multiinstitutional consensus project was completed to summarize current knowledge on unexplained symptoms after terrorism and war.