how do the concepts of medicalization and social control unfold in the readings above?
PII: S0277-9536(98)00308-6 DIAGNOSING MORAL DISORDER: THE DISCOVERY AND EVOLUTION OF FETAL ALCOHOL SYNDROME ELIZABETH M. ARMSTRONG1 1Department of Health Management and Policy, University of Michigan, 109 S. Observatory, Ann Arbor, MI 48109, U.S.A. AbstractÐThe diagnosis of fetal alcohol syndrome (FAS) was invented in 1973. This paper investigates the process by which a cluster of birth defects associated with exposure to alcohol in utero came to be a distinct medical diagnosis, focusing on the ®rst ten years of the medical literature on FAS. Fetal alcohol syndrome was ``discovered'' by a group of American dysmorphologists who published the ®rst case reports and coined the term FAS. However, the nature of the diagnosis and its salient symptoms were determined collectively over time by the medical profession as a whole. The paper traces the natural history of the diagnosis in the U.S. through ®ve stages: introduction, con®rmation and corroboration, dissent, expansion, and diusion. FAS serves as an example of the social construction of clinical diag- nosis; moral entrepreneurship plays a key role and the medical literature on FAS is infused with moral rhetoric, including passages from classical mythology, philosophy, and the Bible. FAS is a moral as well as a medical diagnosis, re¯ecting the broader cultural concerns of the era in which it was discov- ered, including a greater awareness of environmental threats to health, the development of fetal medi- cine, an emphasis on ``the perfect child,'' and a growing paradigm of maternal±fetal con¯ict. # 1998 Elsevier Science Ltd. All rights reserved Key wordsÐFetal alcohol syndrome, diagnosis, moral entrepreneurship INTRODUCTION Fetal alcohol syndrome (FAS), the constellation of symptoms including pre and/or postnatal growth re- tardation, central nervous system disorders includ- ing developmental delay and intellectual impairment, and characteristic craniofacial abnorm- alities linked to drinking during pregnancy, did not exist as a diagnosis twenty-®ve years ago. Yet today, FAS is widely cited as the leading preventa- ble cause of birth defects in the U.S. (e.g., Warren and Bast, 1988; March of Dimes, 1992; CDC 1996; Stratton et al., 1996) and ``a major public health concern'' (Stratton et al., 1996). This paper explores the social construction of this diagnosis within the medical realm and the early evolution of FAS as both a clinical entity and a social problem in the minds of American doctors. I will argue that the diagnosis was shaped by the work of moral entre- preneurs in the ®eld of medicine who ``recognized'' a new ``syndrome''* and ascribed an etiology to it, with little de®nitive proof. The term ``fetal alcohol syndrome'' was itself coined by a group of dysmor- phologists who published the ®rst three articles on what they deemed ``this tragic disorder,'' but the nature of the diagnosis and its salient symptoms were determined collectively over time by a loose confraternity of medical practitioners and research- ers. FAS thus serves as a case study of the diusion of new knowledge in the medical community, illus- trating how a new diagnosis enters and permeates the medical consciousness. This paper analyzes the ®rst ten years of the medical literature on FAS, concentrating on the construction of the syndrome in the United States, where it was ®rst discovered and where it has provoked the most concern. The paper outlines the early history of the diagnosis, drawing insight from social problems theory, exam- ines the role of moral entrepreneurs in creating and disseminating new medical knowledge, and reveals the latent moral dimensions of the new diagnosis. The recognition of a new disease or syndrome is sometimes the result of serendipity, but more often the result of determined investigation and scienti®c entrepreneurship. In the case of fetal alcohol syn- drome, moral fervor powered the discovery as much as medical curiosity. Drinking during preg- nancyÐa social rather than a medical phenom- enonÐcame to be considered a problem worthy of doctors' ever-®nite attention through the work of moral entrepreneurs. Howard Becker ®rst described ``moral entrepreneurship'' in his 1963 book Outsiders. In his words, a moral entrepreneur is one who sees ``some evil which profoundly disturbs him'' (p. 147) and who sets out to remedy the situ- Soc. Sci. Med. Vol. 47, No. 12, pp. 2025±2042, 1998 # 1998 Elsevier Science Ltd. All rights reserved Printed in Great Britain 0277-9536/98/$ - see front matter PII: S0277-9536(98)00308-6 *A syndrome is ``a group of symptoms and signs of disor- dered function related to one another by means of some anatomic, physiologic, or biochemical peculiarity,'' Syndromes are often contested diag- nosesÐe.g., chronic fatigue syndrome, sudden infant death syndrome (SIDS), re¯ex sympathetic dystro- phyÐand as such are ripe for social construction analysis. 2025 ation. Becker notes that while moral entrepreneurs are crusaders, on a holy mission, their crusades often have ``strong humanitarian overtones'' (p. 148). The moral entrepreneur believes that if other people do what he thinks is right, ``it will be good for them'' (p. 148). ``Moral crusaders typically want to help those beneath them to achieve a better sta- tus'' (p. 149). They derive power not only from the legitimacy of their moral position, but from their own ``superior position in society'' (p. 149). That is, moral entrepreneurs tend to be elites working to impress their moral vision on the rest of society. Becker cites prohibitionists and psychiatrists as typical moral entrepreneurs. In fact, Freidson has characterized the physician as an exemplary type of moral entrepreneur. Parsons (1975) has also noted the moral authority of the physician. Since Becker, several observers have noted instances of moral entrepreneurship resulting in the creation of new diseases or diagnostic categories. Stephen Pfohl (1977), for example, characterized the discovery of child abuse as an instance of moral entrepreneurship; Peter Conrad (1975) and Frances McCrea (1986) have analyzed the moral entrepre- neurship in the construction of hyperkinesis and menopause, respectively. Allan Brandt (1990: p. 159) has described the way ``moral reformers''Ð who were epidemiologists and doctors as wellÐ``e- quated moral dangers and health risks'' in proving the causal link between cigarette smoking and lung cancer. In constructing a new diagnosis and by im- plication a social problem, doctors speak with unique authority: in our society, it is still primarily doctors who are granted the authority to identify a new disease. The medical-moral entrepreneurs who published on FAS thus held a formal medical man- date as well as a moral one. DATA AND METHODS In order to scrutinize the initial process of creat- ing and establishing FAS as a diagnosis, I searched the medical literature for the period from 1966 through 1984 using the Medline database, which includes articles dating from 1966 to the present. Since the term ``fetal alcohol syndrome'' is not available as a keyword for searching articles pub- lished before 1976, I also used the keyword combi- nations ``alcohol drinking and pregnancy,'' ``ethyl alcohol and pregnancy,'' and ``ethyl alcohol and abnormalities'' for the entire period. The scope of the review was limited to English language articles concerning human subjects.* Only a limited number of articles on the association between alcohol use and spontaneous abortion and alcohol and low birthweight were reviewed for this analysis. For the period 1966±1972, preceding the ®rst articles on FAS, there were more than 100 items (including articles, letters to the editor, and brief reports) on alcohol and pregnancy, the majority of these con- cerning the intravenous administration of ethanol to arrest preterm labor, at the time a common pro- cedure (for example, see Fuchs et al. (1967)). Between 1973 and 1977, the ®rst four years of the diagnosis, on average 41 items were published annually. In the next two years, an average of 74 items appeared annually, and from 1979 to 1984 more than 100 items appeared annually, with a peak of 160 items in 1981. Thus, there seems to have been sustained but subdued interest in the sub- ject for the ®rst several years after the diagnosis was created. However, it was not until the late 1970 s and early 1980 s that the literature really pro- liferated. It was in 1981 that the Surgeon General ®rst issued guidelines recommending abstinence from alcohol for all pregnant women and those ``considering pregnancy,'' and urging health pro- fessionals to inquire routinely about the alcohol consumption of their pregnant patients (FDA, 1981). THE HISTORY OF FAS AS A DISEASE: INTRODUCTION OF THE DIAGNOSIS Three articles published over a 12 month period from June 1973 to June 1974 in the British medical jounral The Lancet constitute the foundation for the novel diagnosis of FAS. All three articles were written by members of the Dysmorphology Unit at the University of Washington School of Medicine in Seattle; these researchers constitute the core group of FAS moral entrepreneurs. David W. Smith in particular had an interest in identifying, naming and cataloging birth defects and was the author of an atlas of birth defects, Recognizable Patterns of Human Malformation: Genetic, Embryonic and Clinical Aspects (1970, ®rst edition; 1976, second edition). The Dysmorphology Unit' s identi®cation of FAS was an extension of their work on chromosomal anomalies and part of a thrust in medicine at the time to categorize and name birth defects. In fact, in 1973 the U.S. Centers for Disease Control established the ®rst nation-wide birth defects monitoring program. The ®rst article on this new diagnosis, ``Pattern of malformation in ospring in chronic alcoholic mothers,'' was published in June 1973, with Kenneth L. Jones, David W. Smith, Christy N. Ulleland and Ann Pytkowicz Streissguth sharing authorship (Jones et al., 1973). This article was pre- sented as an early warning call to clinicians; it sta- ted, ``The purpose of this report is to alert physicians and other health professionals to a pat- tern of altered morphogenesis and function in eight unrelated children who have in common mothers * Although there is an abundant literature on the eects of alcohol during pregnancy in animal subjects, a review of that literature would constitute a paper in and of itself. Thus, I will not consider it here. E. M. Armstrong2026 who were chronic alcoholics during pregnancy'' (Jones et al., 1973: p. 1267). It presented detailed case reports of three Native American, three black, and two white children. The article noted the shared anomalies among these children, including develop- mental delay, microcephaly (abnormally small head), prenatal and postnatal growth de®ciency, short palpebral ®ssures (which give the eye a round look), epicanthal folds (a distinctive feature of the eyelid), small jaws and ¯attened midface, joint anomalies, altered palmar crease patterns, and car- diac abnormalities. The authors concluded their ob- servations by claiming that ``the data are sucient to establish that maternal alcoholism* can cause serious aberrant fetal development. Further studies are warranted relative to the more speci®c cause and prevention of this tragic disorder'' (Jones et al., 1973: p. 1271). The term ``fetal alcohol syndrome'' was ®rst introduced in a