...response, the Motherisk Update advised the use of brief standardised alcohol-use questionnaires that can be used to screen women for risk drinking during pregnancy, and of a screen that can be conducted using an infant's first stool that may be indicative of prenatal alcohol exposure. The Update acknowledged that clinicians do not routinely ask patients about alcohol use.

The Motherisk Clinical Practice Update raises a number of important questions: Why is the physician concerned about alcohol use during pregnancy? What sort of maternal characteristics might make a physician suspect their patient is drinking during pregnancy? What methods are available to screen for prenatal alcohol exposure? What are the ethical and legal considerations in screening for prenatal alcohol exposure? Are there legal cases that we can learn from in the area of perinatal screening regarding substances of abuse?

II. Introduction

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term describing the range of physical, cognitive and neurobehavioral effects that can occur in an individual whose mother consumed alcohol during pregnancy. (2) This is concerning as approximately 15-45% (3,4,5) of women in Canada consume alcohol during pregnancy despite recommendations that women abstain. (6) FASD is thought to be the most common non-genetic cause of mental, learning and behavioural disabilities in North America and is a serious lifelong condition. (7) The impact of FASD is wide reaching, touching the life of the individual and the lives of family members and society as a whole. (8,9) In contrast to other birth defects and genetic conditions, FASD has received attention from medical and public health professionals because it is a preventable condition. (10) In Alberta, an estimated 29% of children in government care and at least 60% of the prison population have some sort of deficit associated with alcohol exposure, highlighting the need for members of the legal profession to have a better understanding of these conditions. (11)

Early diagnosis, a supportive environment, and early intervention have been identified as crucial factors to optimise outcomes for affected individuals. (12,13) However, the diagnosis of any given FASD is complex and often does not occur until school age, if at all, at which point maximal benefit from early intervention and support may not be achieved. (14) The use of fatty acid ethyl ester (FAEE) testing in infant meconium and scalp hair to screen for prenatal exposure to alcohol is a fairly recent scientific phenomenon (15,16), which has been proposed as an aid to medical professionals in the early identification of children who may be at risk for a FASD, thus enabling health care professionals to diagnose earlier.

This paper presents an overview of FASD, reviews FAEE screening, and then focuses upon the ethical and legal challenges inherent in the new screening technologies as they relate to providing care to women and their infants. This is followed by an analysis of a recent US Supreme Court case involving screening of pregnant women for the use of cocaine, which is relevant to the discussion. An American case is used to highlight the ethical and legal issues as no recent Canadian case was identified as pertinent to screening. While screening for FAEE in hair or meconium are the examples used for this discussion, the issues raised are not unique to these screening modalities. This paper argues that cautious consideration of the ethical and legal issues in caring for both women and their infants is required prior to drafting policies and practice guidelines for the use of screening for prenatal exposure to alcohol.

III. Fetal Alcohol Spectrum Disorder

Fetal alcohol syndrome [FAS] was first coined over 30 years ago by Jones et al. (17), to describe a group of children born to mothers with histories of alcohol abuse who presented with several characteristic features including craniofacial abnormalities, growth restriction, and neurocognitive deficits. Since then, there has been a growing recognition of the range of deficits in a child that can accompany prenatal alcohol exposure. To describe this range of deficits, the term FASD was proposed by Streissguth et al. (18) FASD, a descriptive term rather than a diagnosis, includes FAS, partial FAS, Alcohol-related Neurodevelopmental Disorder [ARND] and Alcohol-related Birth Defects [ARBD]. (19) Currently, FASDs are believed to be underdiagnosed and many children are not diagnosed until they are school-aged. (20,21) The prevalence of FAS/FASD commonly reported in the literature for urban populations is 0.5 to 3 cases per 1,000 live births for FAS, and approximately 1 to 12 cases per 1,000 live births for a FASD.(22)

FASD includes a characteristic triad of deficits, namely, growth restriction, craniofacial abnormalities, and neurocognitive deficits. (23) Affected individuals may exhibit a wide range of physical features, from growth restriction, central nervous system [CNS] defects, birth defects, and characteristic craniofacial abnormalities (24) to normal growth and facial features. FASDs are most often unrecognisable at birth and can continue to go unrecognised as a child develops if neurocognitive deficits are present in the absence of physical manifestations. (25) Affected individuals can have primary and secondary disabilities, and mental health comorbidities. Primary disabilities related to CNS dysfunction include cognitive impairment, attention deficit hyperactivity disorder, difficulties with language, communication, memory, learning, adaptive functioning and executive functioning. (26) However, there is no one profile of primary cognitive deficits. Some affected individuals may have high intelligence quotients (27), but may be unable to interact appropriately in social situations. (28) Cognitive and behavioural abnormalities often persist into adulthood. (29) Secondary disabilities occur as a result of living with primary disabilities and may include mental health disorders, drug and alcohol addictions, disrupted school experiences, joblessness, homelessness, involvement with the law (30), custodial sentences as a result of criminal behaviour, and inappropriate sexual behaviour. (31)

The primary and secondary disabilities of FASD have a significant impact economically, socially, and medically for Canada. (32,33) The estimated cost for additional education, support for disabilities, incarceration, and health care per individual with FAS can be as high as $3.0 million over the lifetime of the individual. (34) FASD touches not only the affected individual, but mothers, fathers, the entire family and the community, all at a terrific cost. (35) Parents of individuals with FASD may find coping with primary and secondary disabilities to be a formidable task, especially if children are not appropriately supported in school or by health professionals, and may feel isolated by the common misunderstandings that result as children grow and develop. Young people with FASD are disproportionately represented in the juvenile criminal justice system (36,37), and generally require intense supervision and direction. This also applies to older individuals who have a history of criminal behaviour, but who have received conditional or suspended sentences. (38,39)

There is some evidence to support improved outcomes for children with an FASD as a consequence of early diagnosis linked with early intervention and support. (40,41) One study of individuals with FAS found that those who were diagnosed before the age of six had a lower rate of secondary disabilities. (42) Those diagnosed early were less likely to have disrupted school experience, display inappropriate sexual behaviour, and have trouble with the law. (43) There is a consensus in the literature and among experts in the area that early diagnosis and appropriate intervention and placement in a stable, nurturing environment are protective factors which can minimise secondary disabilities. (44) However, early identification of the physical stigmata of FASD is challenging because of the difficulty inherent in assessing dysmorphology in infants and the considerable challenge in determining if the neuropsychological deficits that a child presents with are due to a prenatal alcohol exposure alone, as there are a multitude of non-alcohol related factors that have a significant impact on child development. Additionally, there is systematic underreporting and documenting of alcohol use during pregnancy, so clinical suspicion of prenatal alcohol exposure may not be raised. (45,46)

a) Maternal Alcohol Consumption

The current Health Canada Guidelines recommend that women should abstain from consuming alcohol if they are pregnant or are attempting to become pregnant as a safe level of alcohol consumption during pregnancy has not been established. (47) In Canada, rates of alcohol consumption during pregnancy were estimated using the 1996-1997 National Longitudinal Survey of Children and Youth [NLSCY]. In the Prairie Provinces, approximately 16.1% of women with young children who were surveyed reported drinking during pregnancy while, overall, 16.6% of women in Canada reported some drinking during their pregnancy. (48) This study did not discuss many potentially important factors of prenatal alcohol exposure, including timing, frequency, regularity of consumption, and binge patterns. (49)

The accuracy of self-reporting of alcohol consumption during pregnancy can be highly variable and is thought to significantly underestimate the true prevalence in the maternal population. (50,51) This underestimate is attributed to difficulty in recall, shame, fear of law enforcement or loss of custody of children, denial of the problem by pregnant women and those close to them, lack of accessible treatment, and inconsistent intrapartum screening for alcohol and drug use by health care professionals. (52,53,54,55) Self-report depends not only upon a mother responding truthfully, but also upon a clinician attentively asking the right questions. (56) Chasnoff has noted that an informal interview of a mother inquiring about alcohol and drug exposure results in under-reporting, whereas a more formal and organised interview increases reporting five-fold. (57) Maternal self-report of alcohol use during pregnancy can be valid, cost-effective and less invasive than the use of biomarkers (58) in the context of an established and trusting relationship with a care provider in which questions around alcohol use are asked in a standardised fashion.

Empirical data suggest that women who choose to carry pregnancies to term often report decreasing alcohol and drug use during pregnancy. (59,60,61) Many women either reduce their consumption or stop drinking altogether when they begin trying...

NOTE: All illustrations and photos have been removed from this article.



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