Egon Jonsson, PhD: Fetal Alcohol Spectrum Disorders (FASD): A Policy Perspective

PhD

First Published March 5, 2019 Editorial 

The link between alcohol use and poor pregnancy outcome may have been observed for thousands of years, as described in a contribution to this issue of the journal by Brown et al.1 Although scientific evidence of the teratogenic effects of alcohol was published 45 years ago, and the awareness about this has increased since then, little has been achieved to effectively prevent the harms of alcohol use during pregnancy. Moreover, as is shown in another article in this issue by the same authors, there is still no universally accepted diagnostic tool available for the range of syndromes named fetal alcohol spectrum disorders (FASD). The slow pace of actions in the field is blamed on the relative scarcity of research on FASD, which may have serious implications for appropriate planning, policy, and practices in the field.2

There are probably few if any diseases or disabilities with such broad and appalling consequences in humanitarian, social, and economic terms as FASD. It can affect the whole body including a range of deficiencies from lifelong brain trauma and from disabling physical conditions.36 Its burden not only is seen in health care but also stretches into many other sectors of the society, such as the educational, social, and legal systems for which the economic implications are huge. In Canada, there are an estimated 350,000 people living with FASD and about 4000 babies born with FASD annually based on a conservative prevalence rate of 1% at the population level. The total annual cost of FASD in Canada has recently been estimated at about $9.4 billion, most of which falls within criminal justice: the police, the courts, the correctional, and victim services.7

The reason for FASD is known and preventable. It is caused by alcohol exposure to the embryo/fetus during pregnancy. Alcohol easily crosses the placenta and may cause cell damage and interfere with developing organs, for example, the brain and the spinal cord. Several organs are sensitive to alcohol exposure during all stages of pregnancy. However, a spectrum indicates varying degrees of severity. The most severe alcohol-induced birth defects, which may shorten the average life expectancy to about 34 years, are a result of very heavy prenatal exposure.8 However, the volume of alcohol consumed during pregnancy does not seem to be the only factor determining whether trauma is caused to the developing child. As stated by a prominent researcher in FASD cell biology and physiology, the “variability from individual to individual with respect to genetic background, as well as in exposure to other predisposing or protective environmental factors makes it difficult, if not impossible, to define a universally safe maternal dose of alcohol.…With much of embryogenesis occurring prior to the time that pregnancy is typically recognized, unintended alcohol exposure is common” (p. 38).9

A developing child who has been exposed to alcohol during pregnancy may experience neurological disorders including cognitive deficiencies such as problems with memory, learning, attention, and social communication. FASD is in general not visible; however, for a fraction of the disorders (fetal alcohol syndrome [FAS] accounting for between 10% and 30% of all FASDs in most studies), there are often specific signs, such as malformations of the face and growth retardations. People born with FASD may also experience several physical diseases and impairments during the life span, such as, for example, heart defects, kidney failure, hearing loss, gastroenteritis, pneumonia, bronchitis, epilepsy, sleeplessness, and bone and joint problems. FASD is also related to a higher risk of secondary disabilities such as dropping out of school, disrupting family and placement, becoming unemployed or homeless, abusing alcohol and drugs, and, not least, being involved with the criminal justice system.10 Without appropriate support for people with FASD, it can be devastating for the individual, the family, other caregivers, and society. With strong and structured support of individuals with FASD, many of the secondary implications may be prevented or at least reduced.11

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