PII: S XXXXXXXXXX
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
A
or, 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
eports 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 co
oboration,
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
hetoric, including passages from classical mythology, philosophy, and the Bible. FAS is a moral as
well as a medical diagnosis, re¯ecting the
oader 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-
le cause of birth defects in the U.S. (e.g., Wa
en
and Bast, 1988; March of Dimes, 1992; CDC 1996;
Stratton et al., 1996) and ``a major public health
concern'' (Stratton et al., XXXXXXXXXXThis paper explores
the social construction of this diagnosis within the
medical realm and the early evolution of FAS as
oth 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 distu
s
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
XXXXXXXXXX/98/$ - see front matte
PII: S XXXXXXXXXX
*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 othe
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 XXXXXXXXXXThey derive power not only from the
legitimacy of their moral position, but from thei
own ``superior position in society'' (p XXXXXXXXXXThat 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 XXXXXXXXXXhas 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 XXXXXXXXXXand Frances
McCrea XXXXXXXXXXhave 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 numbe
of articles on the association between alcohol use
and spontaneous abortion and alcohol and low
irthweight 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
ief reports) on
alcohol and pregnancy, the majority of these con-
cerning the intravenous administration of ethanol
to a
est 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 fo
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,
Em
yonic and Clinical Aspects (1970, ®rst edition;
1976, second edition). The Dysmorphology Unit' s
identi®cation of FAS was an extension of thei
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., XXXXXXXXXXThis 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
eview 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 XXXXXXXXXXIt 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 palpe
al ®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 abe
ant fetal development. Further studies
are wa
anted 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