The social dimensions of leprosy
To leprosy patients, their families, and the many medical and paramedical workers who assist them, the social and psychological consequences of this disease are as familiar, in their generalities, as the tender, red lesions of ENL are familiar to the clinician, or the immunologic deficits of LL leukocytes are familiar to immunologists in the laboratory. No one seriously questions the proposition that these social facets of leprosy are very important in the lives of the patients and their families, and to the states and nations where they live. Research into the social aspects of leprosy has not, however, received financial or other support comparable to the resources that have been available for decades to those who have studied the immunology, microbiology, and pathogenesis of leprosy.
It is time, indeed overdue, that social scientists be brought more actively into the study of this disease. The JOURNAL has made a commitment to support such undertakings by making a concerted effort to publish reports arising from good quality research in the social sciences. The review paper by van Brakel and the pilot study by Nicholls, et al. in this issue represent the beginning of this initiative. To do this, the JOURNAL has necessarily begun to develop a network of social scientists who will serve as reviewers of manuscripts so that the social science research published in the JOURNAL will meet a high standard of quality, as measured by contemporary standards within the social science research community. Financial and intellectual support for such research, however, must come from those organizations that have a long-term interest in medicine and health.
The new editor takes on this task with no little apprehension. I certainly do not want to alienate the traditional readership base of the JOURNAL, nor leave the impression that the JOURNAL has lost interest in the medical and basic sciences. Rather, it is my conviction that we need to be more inclusive of the knowledge and insights that are to be gained from social science research. I have been ably assisted in the initial efforts by Dr. Judith Justice, Professor of Medical Anthropology, University of California School of Medicine, San Francisco. Dr. Justice is a member of the Board of Directors for the International Leprosy Association, and has herself published extensively on the social aspects of many different medical conditions.
We undertake this effort with the conviction that a direct line connects the work, for example, of the molecular biologist studying the regulation of a single cytokine, to the work of the immunologist studying the complex interactions of cells and cytokines, to the work of the pathologist and clinician studying neuritis and its resulting deformities, to the work of social scientists studying the stigma and social ostracism that are consequences (in part) of these deformities. It is important, therefore, that the basic scientist understand and acknowledge the far-flung impact of the cellular interaction or cytokine she studies, on the social and psychological well-being of the patient in whom those cells and cytokines are at work. It is equally important that the social scientist understands and acknowledges the basic biological mechanisms underlying the medical complications that ultimately elicit the stigma and social ostracism that he studies.
Regrettably, these two groups of scientists seldom interact in the same sessions at congresses and other meetings, although this is understandable because few individuals, if any, understand the methods and specialized expertise involved in so many different types of work. One goal of this initiative of the JOURNAL is that in the not too distant future it will be possible to organize at our own meetings interdisciplinary session(s) that will bring scientists from disparate disciplines together in mutually beneficial and productive interaction. Since many other diseases also have important social dimensions, this is another area in which leprosy may serve as a highly informative model for the medical community at large.
Editorial opinions expressed are those of the writers.