19 October 2013

Human experimentation, ethics and disadvantage

'From Skid Row to Main Street: The Bowery Series and the Transformation of Prostate Cancer, 1951–1966' [PDF] by Robert Aronowitz in Bulletin of the History of Medicine (forthcoming) comments that
Between 1951 and 1966, more than 1,200 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.
Aronowitz   notes that
Starting in 1951 and continuing for over a decade, Columbia University investigators recruited more than 1,200 homeless, alcoholic men from New York City’s skid row, the Bowery, brought them to a recently opened public cancer hospital, and subjected them to many invasive tests and procedures, including open perineal biopsy of the prostate gland.1 If positive for cancer, men typically underwent radical prostatectomy and surgical castration followed by a course of hormonal treatment. Although some kind of consent may have been obtained, these studies were conducted on poor, helpless men because investigators would and could not do these experiments on people with more autonomy, power, and dignity, such as the paying private patients at nearby Columbia Presbyterian Hospital.
Like other cases of unethical research practices such as those exposed by Henry Beecher in 1966, the Bowery series was published in leading medical journals, cited frequently in the medical literature, and was the subject of popular news coverage. These practices were ultimately forgotten and had minimal direct impact on subsequent clinical developments. Yet their history is significant because they provide a provocative and illuminating perspective with which to view subsequent events. The Bowery series was a prescient attempt to combine a set of existing practices for diagnosing and treating prostate cancer into a new early detection and radical treatment paradigm. Very similar practices would gain acceptance decades later. The difficulties of retrospective ethical judgments notwithstanding, we today respond to the invasive procedures done to ill-informed men for uncertain benefit with some disgust and disbelief. Yet very similar practices in the ensuing decades generally have not elicited similar reactions. Why? Comparing and contrasting the Bowery series’ assumptions, goals, and limited impact to subsequent developments provides some answers. This historical juxtaposition also makes visible some underappreciated ethical challenges posed by the ways that mass risk-reducing interventions have gained acceptance within modern medicine and society.
It is unsatisfying to simply observe that medical technologies and practices are accepted because they are effective at saving lives and reducing morbidity. Not only is evidence of scientific efficacy only one reason why medical and lay people accept new technologies and practices, but scientific evidence is often absent or contested. Historians, especially since Rosenberg’s influential 1977 essay, have researched the social and historical context within which actors determine whether medical treatments work or not. This “social efficacy” approach, which is also central to contemporary anthropological studies of medical practice, focuses on the work done besides the direct impact on objective states of health.
Pressman noted that “a therapy’s usefulness is contingent upon a particular historical era.” The corollary is also true. There may be a good deal of historical contingency to a therapy’s lack of utility, i.e. its limited social efficacy. Looked at this way, the Bowery series is a crucial side story illuminating what needed to happen in order for cancer risk to later get into men’s bodies on a mass scale. Contrasting the failure of the Bowery practices to gain much traction with similar practices deemed efficacious in later periods allows us to identify developments — besides evidence of scientific efficacy — that changed the way these similar interventions were later understood, legitimated, and diffused throughout American medicine and society.