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Williams syndrome

Williams syndrome (Williams-Beuren syndrome) is a rare genetic disorder, occurring in fewer than 1 in every 20,000 live births. more...

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Symptoms

It is characterized by a distinctive, "elfin" facial appearance, an unusually cheerful demeanor, ease with strangers, mental retardation coupled with an unusual facility with language, a love for music, cardiovascular problems such as supravalvular aortic stenosis, and hypercalcemia. Williams shares some features with autism, although persons with Williams syndrome generally possess very good social skills, to the point that this condition is sometimes called "cocktail party syndrome".

Another symptom of Williams syndrome is lack of depth perception and inability to visualize how different parts assemble into larger objects (for example: assembling a jigsaw puzzle). This problem is caused by a slight defect in the brain that creates a sparsity of tissue in the visual systems of the brain. A team of researchers at the National Institute of Mental Health used functional magnetic resonance imaging (fMRI) to watch the blood flow of the brains of test subjects while they were performing two tasks involving spatial relations. Persons with Williams syndrome showed weaker activity in the section of the brain associated with spatial relations. Scans of brain anatomy of test subjects with Williams indicated a deficit of brain tissue in an area of the same section of the brain mentioned above. This deficit partially blocks transmission of visual information to the spatial relations region of the brain. In the test, all participants of the study measured in the average intelligence range to remove the possibility that the retardation aspect of Williams syndrome may have had an effect on the visual systems of the tested individuals.

Causes

Williams syndrome is caused by the deletion of genetic material from a specific region of chromosome 7. The deleted region includes more than 20 genes, and researchers believe that the loss of several of these genes probably contributes to the characteristic features of this disorder. CYLN2, ELN, GTF2I, GTF2IRD1, and LIMK1 are among the genes that are typically deleted in people with Williams syndrome. Researchers have found that loss of the ELN gene, which codes for the protein elastin, is associated with the connective tissue abnormalities and cardiovascular disease (specifically SVAS) found in many people with this disease. Studies suggest that deletion of LIMK1, GTF2I, GTF2IRD1, and perhaps other genes may help explain the characteristic difficulties with visual-spatial tasks. Additionally, there is evidence that the loss of several of these genes, including CYLN2, may contribute to the unique behavioral characteristics, mental retardation, and other cognitive difficulties seen in Williams syndrome.

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Global Perspectives on Fetal Alcohol Syndrome: Assessing Practices, Policies, and Campaigns in Four English-Speaking Countries
From Canadian Psychology, 8/1/05 by Kyskan, Christina E

Abstract

Maternal alcohol consumption during pregnancy places the fetus at risk for a number of neurological abnormalities and functional impairments. These deficits are 100% preventable by abstaining from alcohol use during pregnancy. Nevertheless, the worldwide prevalence of Fetal Alcohol Syndrome (FAS), the most severe outcome of prenatal alcohol consumption, is estimated at 0.97 cases per 1,000 live births (see May & Gossage, 2001). This paper examines awareness of the problem in Canada, the United States, the United Kingdom, and Australia along three dimensions: 1) the relationship between alcohol consumption rates and the incidence of FAS; 2) government action and policy creation; and 3) prevention/intervention initiatives and educational efforts. The extent of knowledge within each country affects, and is affected by, the level of research activity, the emphasis on policy creation, and the initiatives that drive educational efforts. At present, Canada and the U.S. have the highest levels of activity and a clear recognition of the problem. Activity in the U.K. and Australia is at the grass-roots level, although some promising movements toward greater public and professional awareness have begun.

Alcohol is a legal and socially acceptable drug. The effects of alcohol on the user are widely known to the public. Decreased inhibition, loose muscle tone, loss of line motor coordination, reduced activity in the central nervous system, impaired reasoning, memory loss, and euphoria are just a few of the short-term effects of alcohol intoxication (Kuhn, Swartwelder, & Wilson, 1999). A potentially far more serious cost of alcohol consumption by pregnant women is much less well understood by the public. The Institute of Medicine (1996) has reported that alcohol produces the most serious neurobehavioural effects in the fetus, compared to other drugs, including heroin, cocaine, and marijuana.

The consequences of prenatal alcohol exposure fall along a continuum, ranging from subtle neurodevelopmental and behavioural manifestations to Fetal Alcohol Syndrome, the most serious outcome of prenatal alcohol exposure. Recently, the term Fetal Alcohol Spectrum Disorder (FASD) was coined to encompass all the terms that describe alcohol-related defects, including FAS (Sokol, Delaney, & Nordstrom, 2003). Other terms, such as Fetal Alcohol Effects (FAE), partial FAS (pFAS), atypical FAS, alcohol-related neurodevelopmental disorder (ARND), and alcoholrelated birth defects (ARBD) describe other effects within the spectrum. For the remainder of this paper, reference will be made to FAS.

Fetal Alcohol Syndrome is the single most preventable cause of birth defects (Bratton, 1995; Institute of Medicine, 1996) and is recognized by the World Health Organization (WHO, 1999) as the leading cause of environment-related birth defects and mental retardation in the Western world. It refers to a specific cluster of anomalies and developmental delays among children associated with the use of alcohol during pregnancy (Conry & Fast, 2000). Abel (1995) estimated that 4.3% of heavy drinkers give birth to a child with FAS. According to the United States Institute of Medicine (1996), a diagnosis of FAS requires a confirmed history of maternal alcohol exposure, evidence of facial dysmorphology (distinctive facial features), growth retardation, and central nervous system (CNS) dysfunction. Recent research employing magnetic resonance brain imaging techniques has revealed that FAS-related neurological deficits are uncorrelated with facial abnormalities (Bookstein, Sampson, Connor, & Striessguth, 2002). Consequently, a child without the distinctive morphological features may be as severely impaired in functional skills as someone with the full range of diagnostic criteria.

Key Issues

This paper examines the issues of alcohol and pregnancy, government policies, and awareness of FAS within four English-speaking countries: Canada, the United States, the United Kingdom, and Australia. The rationale for choosing this particular sample of countries is two-fold. First, English is an official language in each country, thus affording the authors easier access to information and facilitating communication with key FAS experts in their respective countries.

second, comparing these industrialized countries provided relative uniformity with respect to factors such as literacy rates, advances in technology, and general knowledge - factors that vary widely in nonindustrialized countries.

Three areas are explored. First, the relationship between alcohol consumption rates and the incidence of FAS are discussed for each country. Abel (1995) reported that "the most critical determinant for the presence of FAS continues to be the country in which the study is conducted" (p. 439). For countries in which there are high proportions of women who drink alcohol, it might be reasonable to assume that the incidence of FAS would be higher than in countries with lower rates of alcohol consumption. Nevertheless, previous studies have demonstrated that an inverse relationship exists between consumption and incidence rates within specific countries (Abel, 1998). This paper will explore possible explanations for this counterintuitive finding.

A second area for investigation is the action that governments have taken on the issue of alcohol consumption during pregnancy. Increasing knowledge of how consumption patterns determine alcohol-related outcomes is leading to new policies on alcohol consumption (Grant & Litvak, 1998). Research shows that there is no safe level of consumption. We examine how research affects social policies and recommendations within each country.

Finally, the presence of campaigns, organizations, public education efforts, and government funding reflects a country's awareness of FAS and the priority it gives to it. Selected efforts within each country are reviewed.

Before action can be taken toward a problem, it must first be identified as a problem. Most of the information on FAS originates in the United States. This knowledge has been shared with countries around the world. Still there are stark differences in each country's readiness to act, primarily due to the extent of acknowledgement of the problem. Recognition of FAS is part and parcel of generating knowledge amongst diagnosing professionals, creating government policies, acquiring funding for research, developing prevention/intervention programs, and creating public awareness. These components work in concert. In countries with little or no formal recognition of FAS, it is possible that the private sector may fill the need to raise public and governmental awareness by generating its own initiatives. This paper examines the extent of FAS recognition among these four countries by comparing these components and their synergistic relationship.

Alcohol Consumption Patterns and FAS Rates

Canada

According to the Institute of Alcohol Studies (2004b), Canada's per capita alcohol consumption rate is about 6.6 units of absolute alcohol, one of the lowest rates in the world. Estimates on the prevalence of FAS vary widely, depending on the diagnostic criteria used, the method of case selection, and the population surveyed (Roberts & Nanson, 2001). Population-based studies and community studies are used to gather information on the incidence of FAS. The former yield lower estimates than do the latter because communities typically choose to participate out of a concern with high rates of substance abuse during pregnancy. Two population-based prevalence studies have been published in Canada. The most recent study used preexisting data from hospitals in Saskatoon and reported an estimate of 0.5 cases per 1,000 live births in the province of Saskatchewan (Habbick et al., 1996). In this study, FAS was operationally defined using the U.S. Institute of Medicine criteria, which include known histories of exposure (Institute of Medicine, 1996). Sometimes prior exposure is strongly suspected, but strictly speaking not "known." The authors speculated that the prevalence of the full spectrum of alcoholrelated disorders is likely 3-5 times higher than FAS alone. Some community studies in Canada have documented rates of FAS as high as one in four pregnancies (Robinson, Conry, & Conry, 1987; Williams, Odaibo, & McGec, 1999). Overall, prevalence rates are noted to be higher among Aboriginal populations (Square, 1997). Although public education has been on the rise in Canada, it appears that knowledge within populations most likely to abuse alcohol, such as native peoples of northern Manitoba, is lowest (Williams & Gloster, 1999). It is estimated that 300,000 Canadians are currently struggling with FAS (FASworld Toronto, 2002). Such findings contrast with a Canadian study conducted in the late 1980s that estimated zero cases of FAS per 1,000 births (Fried & O'Connell, 1987). Greater awareness and improved diagnostic skills amongst professionals may be responsible for the apparent increase in FAS rates. Roberts and Nanson (2001) put the Canadian prevalence rate at 1-2 per 1,000 births, indicating that at least one child is born with FAS each day.

United States

Overall, statistics show that amongst teens in the U.S., alcohol consumption has declined.

The 1999 National Household Survey on Drug Abuse (U.S. Department of Health and Humbar Services, date) reported a 47% decline in illegal alcohol consumption among teens (12 to 17 year olds), and it is currently at its lowest level since tracking began in 1979. However, this trend does not hold for pregnant women.

In 1995, compared to 1991, four times as many pregnant women frequently consumed alcohol (Hosaka, 1998). Researchers speculate that the increase in alcohol consumption by pregnant women may be attributed to widespread media reports on the health benefits of moderate drinking (Ebrahim et al., 1998). The U.S. Department of Health and Human Services (1998a) reported that 51% of women of child-bearing age between 18-25 and 53% between 26-34 reported the use of alcohol within the past month. A national survey found that more than half of women age 15-44 drank while pregnant (U.S. Department of Health and Human Services, 1998b). Despite the fact that many American women are not heeding warnings against drinking alcohol while pregnant, the U.S. has a relatively low per capita rate of alcohol consumption (about 6.7 units of absolute alcohol) compared to most European countries (Institute of Alcohol Studies, 2004b). Although it might be assumed that the U.S. would have a low incidence of FAS due to reduced alcohol consumption, the general incidence of FAS is comparable to the Canadian rate of 1-2 per 1,000 births (Abel, 1995; May & Gossage, 2001). Explanations for this notable disparity will become clear as the policies and practices of each country are reviewed in upcoming sections.

United Kingdom

Alcohol consumption is a growing problem in the U.K. In 1997, the U.K. had the highest per capita consumption of absolute alcohol among the English-speaking nations (Australia had the second highest) (World Drink Trends). The Australian Institute of Criminology (2001) reported on world drink trends. While the percentage change in total alcohol consumption decreased in Canada, the U.S., and Australia (21.1, 18.5, and 18.5, respectively) from 1980 to 2000, total consumption increased in the U.K. by 15.4%. Institute of Alcohol Studies (2004b) reported similar findings, and predicted that if these trends continue, the U.K. will overtake France (known to have one of the highest levels of alcohol consumption in the world) within the next 10 years. Additionally, these increases in average consumption, amount of heavy drinking, and extent of alcohol-related harm have been greater in women than in men (Institute of Alcohol Studies).

Drinking alcohol is also a growing problem amongst U.K. teenagers. The amount of alcohol consumed by 11- to 15-year-olds has doubled since 1990 to 10.4 units per week (Department of Health, 2001). Additionally, 29% of 15- to 16-year-olds have been drunk more than 20 times in their lifetime (Phillips, 2001). The U.K. also has the highest rate of teen pregnancy in Western Europe (Freedman, 2002). Links between alcohol and risky sex have been found. Research indicated that consuming alcohol might provide the "confidence" to have sex when inhibitions are reduced (Plant, Bagnall, & Forster, 1990) and may offer a more legitimate excuse for engaging in risky sex (Rhodes & Quirk, 1995). These findings are particularly worrisome given the population make-up. Alcohol Alert, a magazine produced by the Institute of Alcohol Studies, reported that by 2011 one in three Londoners will be under the age of 25 (Phillips). The culmination of these facts points to a high risk of FAS in the U.K. as a rising generation of young female drinkers emerges.

A 1995 survey conducted by the Office for National Statistics (1997) in the U.K. reported that in the 86% of mothers who had drunk alcohol before pregnancy, 66% drank alcohol while they were pregnant, and 24% of drinkers gave up during pregnancy. Women who drank during pregnancy had, on average, a very low consumption of alcohol: 70% of drinkers consumed less than 1 unit of alcohol per week on average, and only 3% drank more than 7 units per week. Only 1% of pregnant women drank more than 14 units per week.

Despite the fact that the U.K. has an annual per capita consumption rate of 8.4 litres of pure alcohol consumption per capita, the U.K. has FAS incidence rates of O cases per 1,000 births (Abel, 1998). Understanding the current state of awareness, knowledge, and practices with regards to FAS in the U.K. may clarify the statistical realities.

Australia

In 2001, almost 13 million Australians aged 14 or older consumed alcohol in the last 12 months and 1.3 million consumed alcohol daily (Australians Institute of Health and Welfare). The Australian Institute of Criminology (2001) reported that consumption of alcohol per capita (total litres of pure alcohol) was highest in the 1970s and early 1980s at over 9 litres. In 2000, 7.8 liters per capita was consumed. This translates to an 18.5% decline in total alcohol consumption from 1980 to 2000 (Australian Institute of Criminology).

Estimates of alcohol consumption during pregnancy are not as encouraging. During 1991-1995, alcohol use by pregnant women increased substantially, and alcohol use by nonpregnant women of childbearing age increased slightly (Centre for Disease Control, CDC, 1997). A 1998 household survey commissioned as part of the Australia National Drug Strategy reported that 39% of females who consumed alcohol did so at hazardous rates and that 81% of pregnant women consumed alcohol (Australian Institute of Health and Welfare (AIHW), 2002). Of Australians aged 14 and older, 90.4% had used alcohol, while substantially fewer Australians had used tobacco (49.4%), marijuana (33.1%), amphetamines (8.9%), hallucinogens (7.6%), and pain-killers (6.0%). Alcohol is the most widely used psychoactive, or mood-changing, recreational drug in Australia (Australian Drug Foundation, 2002).

The annual per capita rate of alcohol consumption in Australia is about 7.8, which is higher than Canada (6.6) and the U.S. (6.7) and lower than that of the U.K. (8.4) (Institute of Alcohol Studies, 2004b'). Logic would dictate that in populations with a high proportion of women who drink alcohol, the incidence of FAS would be higher than in countries with lower rates of alcohol consumption. Since Australia has a relatively high per capita consumption rate of alcoholic beverages, comparable to European countries such as Germany and Italy, and the U.S. and Canada have relatively low per capita rates of alcohol consumption, one would expect the Australian incidence of FAS to be higher than in the U.S. or Canada. Remarkably, the prevalence of FAS in both Australia and the U.K. is low (Abel, 1998). Conversely, the U.S. and Canada have the world's highest incidences of FAS.

One possible explanation arises from the degree to which health authorities acknowledge and identify the many individuals who have this disability. Sue Miers, spokesperson for the National Organization for Fetal Alcohol Syndrome and Related Disorders (NOFASARD) has noted that: "[un]fortunately there is precious little Australian data on the incidence of FAS. Prevalence estimates of FAS in Australia are lower than in U.S.A and Canada, and this reflects underrecognition, diagnostic difficulties due to lack of training of doctors, and the fact that FAS is not reliably reported to birth defects registries" (S., Miers, personal communication, July 2002; see also Miers, 1999). Furthermore, the complexity of this paradox cannot be addressed fully without acknowledging the possibility of different patterns of consumption between countries. There are numerous variables that could potentially moderate the effects of prenatal alcohol exposure. For example, a higher proportion of binge drinkers versus low levels of daily drinkers, drinking alcohol with meals, or the types of alcohol consumed may alter the consequences of drinking during pregnancy. Cultural differences in drinking patterns in the U.K. and Australian populations (compared to the U.S. and Canada) could, at least theoretically, produce different FAS prevalence rates.

FAS Awareness and Government Policies on Alcohol and Pregnancy

Governments create health policies based on the knowledge provided to them by the scientific community. Public health policy refers to laws, regulations or other mechanisms by which governments seek to influence individual health-related behaviour. The ongoing debate within the research community regarding safe levels of alcohol consumption during pregnancy creates challenges for governments that choose to make recommendations on this issue. As a result, governments differ in the advice they provide to the public. As previously discussed, based on the disparate consumption patterns and attendant FAS rates, it appears that each country may be at a different stage in their overall awareness of and ability or willingness to diagnose FAS. The following section examines the current state of research and formal policies on the issue of alcohol consumption during pregnancy.

Research on Drinking During Pregnancy -Discovery of FAS

Twenty-five years ago, medical professionals were poorly educated about FAS. Streissguth (2002) reported that in 1979 more women believed in abstaining from alcohol during pregnancy than did their obstetricians. In 1973, FAS was defined as a medical condition in the United States (Jones & Smith, 1973). Recent findings indicate that even low levels of alcohol consumption can lead to negative pregnancy outcomes such as the deletion of millions of neurons from the developing brain (Ikonomidou et al., 2000). Reduced brain mass and neurobehavioural disturbances are associated with human FAS.

While most of the research previously discussed is from the U.S., Australian researchers have corroborated the finding that heavy prenatal alcohol exposure can lead to FAS (Roebuck, Mattson, & Riley, 1998). As for the U.K., Gloria Armistead, Founder of FASawareU.K., states that "at the moment in the U.K. there appears to be little or no awareness of FAS. All our information eomes from Canada and America" (G., Armistead, personal communication, July 2002).

United States

The majority of research indicates that no amount of alcohol consumption is known to be safe. Government policy is based on research, and in turn, encourages the initiation and continuation of new investigations. An examination of the history of research and social policy in the U.S. provides a suitable example of this symbiotic relationship.

Streissguth (1997) documented a short 25-year period within which FAS was recognized, named, and scientifically researched. Public policy regarding abstention during pregnancy reflected available scientific knowledge. Prior to 1973, public policy about drinking was affected mostly by the prevailing public opinion that consuming alcohol prenatally was not hazardous. There was little empirical research to refute this notion. By the late 1970s, however, there was ample consensus from clinical observations, epiderniological studies, and experimental animal research to establish alcohol as teratogenic. Public policy shifted as a result of these scientific advancements. In 1981, the Surgeon General issued a health warning recommending that women who are pregnant or considering pregnancy not drink alcoholic beverages (Surgeon General's Advisory on Alcohol and Pregnancy, 1981). Although prevention efforts were taking place in Sweden, France, and British Columbia, the U.S. was the first country to have a national abstinence policy (Streissguth). In 1989, Public Law 100-690 was implemented requiring warning labels on all alcoholic beverages sold in the United States. Since 1990, the Dietary Guidelines for Americans have stated that women who are pregnant or planning to become pregnant should not drink alcohol. The media have played an integral role in the education of parents. In turn, parents have pushed for diagnostic and remediation services.

Canada

The Canadian government has followed suit with respect to an abstinence policy. Health Canada (1996) indicated that "the prudent choice for women who are or may become pregnant is to abstain from alcohol" (p. 5). The Addiction Research Foundation (ARF) in Canada (1993) expressed a similar (but blunter) conclusion by maintaining that pregnant women are "best advised to abstain from alcohol" (P-3).

Legislation on health warning labels has not been adopted in Canada. Experts from the ARF and Canadian Center for Substance Abuse (CCSA) are of the opinion that a simple message would have a minimal effect on behaviour (Canada, 1996). More specifically, they believe that the knowledge generated from warning labels will not, in and of itself, change behaviours. Nevertheless, the Centre for Addiction and Mental Health (CAMH) (2001) supports the use of warning labels. It believes that the labeling is a cost effective prevention tool when it is used as part of a

broader public health effort to provide information that allows the consumer to make informed decisions about alcohol consumption.

Australia

Drug use in general has received a great deal of attention from the government. The Australian National Council on Drugs (2002a) reported that the government allocated $516 million to the National Illicit Drug Strategy. The federal government committed $4 million over four years to reduce alcohol-related harm in the 2000-2001 federal budget. This will fund activities aimed at increasing public awareness of responsible drinking behaviour and the promotion of business and community partnerships (Department of Health and Aged Care, 2000). However, policy, education, and training on FAS were noticeably absent from the agenda. One example of the lack of recognition of FAS can be seen within the medical community. Whereas the Canadian and American Medical Associations have policies relating to clinical practice guidelines for the diagnosis and management of FAS, the Australian Medical Association does not provide any policy or guidelines on the prevention and treatment of FAS (Miers, 1999).

To add to the complexity of the problem, some existing policy statements made to the public do not appear to be aligned. The Australian National Health and Medical Research Council (NHMRC) (1992) reported that "at our current level of knowledge, responsible drinking during pregnancy must still be considered to be abstinence" (p. 36). However, the National Health and Medical Research Council (2001) advises that "Women who are pregnant or might soon become pregnant may choose not to drink alcohol; most importantly should never become intoxicated; if they choose to drink, over a week, should have less than 7 standard drinks and, on any one day, no more than 2 standard drinks (spread over at least two hours)..." (p. 16). Overall, public policy on FAS appears to reflect the belief that the prevalence of FAS is low.

United Kingdom

The International Center for Alcohol Policies (ICAP) (1999) reported on government guidelines on the issue of alcohol and pregnancy around the world. While Canadian, American, and Australian agencies recommended abstinence during pregnancy, the U.K. was the only country of these four that did not endorse this recommendation. Despite recognizing the risks to fetal development associated with alcohol consumption, the Department of Health (1995) concluded that "women who are trying to become pregnant or are in any stage of pregnancy should not drink more than 1 or 2 units of alcohol once or twice a week and should avoid episodic intoxication" (p. 34).

Although their policies do not recommend abstinence, the U.K. government is attempting to address the trends toward increased alcohol consumption by discussing the implementation of a National Alcohol Strategy. The Department of Health enlisted the help of Alcohol Concern, an agency dedicated to reducing the per capita alcohol consumption in the U.K. Recently, the Prime Minister's Strategy Unit (2004) launched the National Alcohol Harm Reduction Strategy, This report sets out the government's strategy for addressing the harms and costs of alcohol misuse as well as the prevention of any further increase in alcohol-related harms in the U.K. Although it addresses numerous alcohol-related issues such as alcohol-related health disorders and disease, crime and antisocial behaviour, loss of productivity in the workplace, and problems for those who misuse alcohol and their families, it does not address the issue of prenatal alcohol exposure. The report made no mention of FAS. Additionally, legislation regarding health warning labels has been rejected in the U.K., mimicking the rationale of the Canadian government. The Parliamentary secretary of Health argued that, "[I]t would be rather difficult to devise a clear, non-misleading and concise message which would effectively inform consumers about all aspects of the alcoholrelated harm" (United Kingdom, 1991).

Prevention, Intervention, and Education: What is Being Done?

Awareness of FAS in Canada and the U.S. has inspired a vast array of campaigns, organizations, and programs. Some of these initiatives are discussed below. The U.K. and Australia lag behind Canada and the U.S. in educating the public on the effects of drinking alcohol during pregnancy. Many professionals lack the training and experience necessary to diagnose and/or provide adequate support for children and families living with FAS. While the federal governments in the U.S. and Canada have taken up the FAS challenge, the message from the scientific community appears to be trickling down relatively slowly in other parts of the world. Miers (2002) reported that the last 12 months has seen an increase in interest in FAS in Australia, but public awareness and government action are limited.

Canada

Explicit recognition of alcohol use during pregnancy as a national health issue is not new in Canada. Over a decade ago, recommendations for screening and counseling pregnant Canadian women about alcohol consumption and FAS were updated from previous recommendations made over a decade earlier (Offord, & Craig, 1994). In 1996, Health Canada, in conjunction with 18 other federal, provincial, and NGOs concerned with FAS, produced a set of recommendations regarding FAS prevention efforts in Canada. Some of the suggestions included continuing education programs for health professionals, ongoing communication between researchers and health-care providers, the provision of special services to address the needs of women (e.g., transportation, daycare), and family-centred and culturally sensitive programs.

In January 2000, the Health minister announced $11 million in FAS funding to enhance public awareness, education, surveillance, early identification and diagnosis, training and strategic project funding (Health Canada, 200Oa). This announcement coincided with the release of a national survey conducted in the fall of 1999 (Health Canada, 200Ob) on the beliefs of women aged 18 to 40 (and their partners) about alcohol use during pregnancy, awareness of FAS, and support for government aide. These data were then used in the development of public service announcements in various media, and to inform specific initiatives, including educating men about supporting their partners' efforts to reduce alcohol consumption.

In March 2000, Health Canada sponsored a Provincial Consultation on the Prevention and Management of FAS in Saskatchewan. Hosted by the Saskatchewan Institute on Prevention of Handicaps (2000), the consultation was the first of a series being held across Canada for the purpose of gathering input for the development of a collaborative National Action Plan on FAS/FAE. Participants from a number of groups within the province (e.g., government- and community-based, First Nations and Metis groups) and from various fields (e.g., health, education, justice) worked collaboratively to outline the key issues and to suggest roles for Health Canada and the fedcral government. Numerous projects are currently funded by Health Canada that address prenatal and early childhood issues, including Community Action Programs for Children (CAPC), Canadian Prenatal Nutrition Program (CPNP), and Aboriginal Head Start (AHS) projects (Leslie & Roberts, 2001). Breaking the Cycle (BTC) is an early identification and prevention program funded by CAPC. Based in Toronto, BTC provides integrated addiction, health, parenting, and child development services for pregnant and parenting women with substance abuse issues and their children. BTC also provides education, training, and consultation to other communities across Ontario and the Maritimes (Leslie & Roberts). BTC's program was described by the United Nations Office on Drugs and Crime (2004) as an exemplary model of how to integrate outpatient services for pregnant and parenting women and their children.

Health Canada (2002) has taken a leading role in national public awareness and education campaigns aimed at increasing public knowledge of FAS and creating a social environment conducive to supporting women in their decision not to drink during pregnancy. Their many initiatives have targeted both professionals and the general public. Physicians are ideally placed to inform women of child bearing years about alcohol use during pregnancy; they play a crucial role in prevention and diagnosis. A national survey is currently being developed that will assess attitudes about FAS amongst, 2000 Canadian pediatricians, obstetricians/gynecologists, family physicians, midwives, and psychiatrists. These data will inform policy, training, and curriculum development. Posters, pamphlets, and public service announcements are part of Health Canada's many prevention initiatives. FAS has been receiving relatively large-scale recognition, as indicated by the success of an FAS Awareness Day, which took place on September 9, 2001. Undoubtedly, Health Canada has played a major role in educating professionals and the Canadian public on FAS in order to facilitate its diagnosis, treatment, and prevention (Health Canada, 2001). Other organizations in Canada disseminate information on FAS and provide support services to the public. For example, Fasworld Toronto, founded in 1995, is a nonprofit support organization with several goals and partners, administered by a couple whose adoptive daughter was diagnosed with FAS (www.fasworld.com).

The Ministry of Children and Family Development for British Columbia is also active in the prevention of FAS, and maintains a website of FAS resources, a list of individuals working on FAS at the provincial level, and information on community initiatives. Additionally, FAS diagnostic clinics have been established in cities across Canada, including Toronto, Winnipeg, and Vancouver. In the past year, funding has been made available to establish additional diagnostic clinics at two other health centres in Toronto. Searches of FAS organizations in Quebec revealed only one site. Syndrome d'Alcoolisation Foetale Effets Relatifs a l'Alcool (SAFERA) (2002) is a nonprofit organization founded in 1998 dedicated to the provision of services to the public and training for health professionals. They work in collaboration with several partners, including a number of French newspapers.

Best Start, an agency funded by the Ontario Ministry of Health and Long-Term Care, has developed an extensive public communication campaign, complete with a research evaluation component, to increase awareness about the serious consequences of alcohol use in pregnancy (Best Start, 2003). The Ontario government has mandated warning signs for licensed establishments about the risks of alcohol use in pregnancy; this requirement came into effect early in 2005.

The preceding information represents just a sample of the activities directed towards increasing public visibility of FAS issues and putting in place the supports needed for children and families affected by FAS. The subject is being addressed at the grassroots level in all provinces and territories. Moreover, a majority of provincial governments recognize FAS as an issue and have allotted resources to professional training and public education, making Canada an emerging world leader in terms of prevention, intervention, and education initiatives.

United States

Alcohol use during pregnancy is a national health concern in the United States. Since the official identification of FAS in 1973, great strides have been made in understanding, treating, preventing, and educating both professionals and the public about this condition. Numerous FAS clinics exist throughout the U.S. The National Organization on FAS (NOFAS) website contains a national and state resource directory (NOFAS, 2004). Furthermore, every state has its own directory that lists all the contact information for community resources, family support groups, assessment sites, prevention programs (e.g., prenatal care, addictions services), and treatment services.

Certain states have made notable strides in their efforts to change public perceptions of alcohol use during pregnancy. Since the late 1980s, Alaska has recognized both the seriousness and extent of prenatal exposure to alcohol, and its impact on the health and well-being of the state. Early efforts focused on recognition, awareness, and data collection. The state's most recent responses to FAS include more directed, concrete efforts involving prevention, intervention, and service delivery strategies (Livey & Casto, 2001). In 1998, the Alaska FAS Surveillance Project was established in collaboration with the CDC and four other states: Arizona, Colorado, New York, and Wisconsin. The project publishes state prevalence rates of FAS. The prevalence rate for Alaska was reported at 1.4 per 1,000 live births. Recognition of the extent of Alaska's problem with FAS provided the impetus for a 5-year $29 million grant from the federal Substance Abuse and Mental Health Services Administration (SAMHSA) whose goals are to promote prevention, early detection, and evaluation of FAS programs. Fetal Alcohol Consultation and Training Services (FACTS) is another project designed to provide statewide assistance, through training, technical assistance and support to schools, individuals, families, and communities working with children affected by FAS.

Some states collaborate. Minnesota, Montana, North Dakota, and South Dakota formed a consortium on FAS with the purpose of sharing both human and financial resources. In 1997, the Governor of Minnesota earmarked almost $7 million to help prevent and combat the damage caused by prenatal alcohol consumption. In 1998, Minnesota unveiled a statewide public awareness campaign, which included media advertisements and the implementation of a toll-free resource and referral line (Carlson, 2001).

A number of organizations in the U.S. have been created specifically to address the problem of fetal alcohol exposure, while several preexisting organizations have taken up the cause. For example, the Institute of Medicine proposed a comprehensive intervention program with three levels of prevention: 1. Universal prevention (e.g., health advisories), 2. Selective prevention (e.g., communities with heavy per capita alcohol use), and 3. Indicated prevention (e.g., persons with a known drinking problem or those who have previously given birth to a child with FAS) (Stratton et al., 1996). The National Organization for Fetal Alcohol Syndrome (NOFAS, 2002) is a key organization dedicated to raising public awareness of FAS and providing support for individuals and families coping with the syndrome. Employing a multicultural approach, NOFAS develops and implements prevention, intervention, and education initiatives in communities throughout the U.S.

It appears that the United States, alongside Canada, has led the way in bringing the issue of prenatal alcohol consumption and its effects to the attention of the world. The aforementioned programs and services are only a sample of numerous initiatives in place across the country.

United Kingdom

The main source of education on the effects of prenatal alcohol exposure in the U.K. comes from websites. FAS-UK is a group of parents and professionals in the United Kingdom. They are devoted to raising awareness about FAS and Alcohol Related Neurodevelopmental Disorders (ARND), reducing the incidence of birth defects caused by prenatal exposure to alcohol, and assisting individuals and families struggling with the life-long disabilities associated with FAS/ARND (Armistead & Armistead, 2002). The founders and coordinators of this organization are a couple whose adopted child has FAS. Woman Student Online (2001) is another website that provides information for female students, including the consequences of drinking while pregnant.

In November 2002, the U.K. hosted its first government-sponsored international FAS conference, with invited speakers from Canada and the U.S. Approximately 95 people attended, mainly professionals. Several upcoming events have been planned with the goal of increasing awareness of FAS among the public and professionals throughout the U.K. Meetings have been arranged by the government for 2004 to discuss ways of making the "Strategy Unit Review of Alcohol" available to the public. Despite recent efforts, U.K. initiatives in prevention, intervention, and education pale in comparison to those of Canada and the U. S.

Australia

In Australia, there is a significant lack of awareness of FAS amongst professionals and the public. Miers (1999) reported that "...in South Australia it appears there is a perception that FAS is rare and consequently our health authorities are not acknowledging or identifying the many children/adults who have this disability ... no public education, no professional training, no public policy, and no management programs or services for people with FAS or their families" (p. 6). Many of the initiatives are at the grassroots level. The National Organization for Fetal Alcohol Syndrome and Related Disorders (NOFASARD) (2002) is Australia's first support group. It has funding to publish and distribute brochures to women's health centres. The Australian National Council on Drugs (2002b) reported on a number of initiatives related to general drug prevention, reduction, education, and training strategies, but, remarkably, omitted the topic of prenatal alcohol use and FAS. One exception was the National Fetal Alcohol Syndrome workshop conducted in Sydney on May 27, 2002. The Minister for Human Services is currently reviewing recommendations for prevention from the FAS task force.

Akin to the U.K., Australia's levels of prevention, intervention, and education initiatives are significantly lower than that of Canada and the U.S.

Summary

Streissguth (1997) reported the five Ps of prevention: public education, professional training, public policy, programs and services, and parent and citizen activism. No single one of these prevention strategies by itself can prevent alcohol-related birth defects; they must work in concert to create a network of activities to protect children from prenatal alcohol exposure. As noted earlier, reported FAS rates in the U.K. and Australia are lower than in the USA and Canada despite higher per capita rates of alcohol consumption. This counter-intuitive finding reflects underrecognition, diagnostic difficulties due to lack of trained doctors, and the fact that FAS is not reliably reported to birth defects registries. Lack of awareness appears to be a major issue in the U.K. and Australia. Without recognition of the problem, it is unlikely that diagnostic consensus can be achieved and, without such consensus, accurate prevalence rates for a country cannot be determined.

The misdiagnosis of FAS can result in unnecessary suffering and a serious public health problem. Alaska has provided an example of how activists and politicians came to recognize the need to inform professionals and the public, implemented the necessary practices, and succeeded in changing long-held beliefs. Knowledge of FAS is steadily increasing due to the ongoing efforts of the FAS community diagnostic teams, the Alaska Birth Defects Registry, and the FAS Surveillance Project (Livey & Casto, 2001).

While there is some activity at the grass-roots level in the United Kingdom and Australia, their reports on incidence rates and costs to society rely heavily on data from Canada, the U.S., and other countries whose research has helped advance the study of FAS (Williams, 1999). When research and government policies on prenatal alcohol consumption across the four cotmtries studied are compared, it is clear that Canada and the United States have many more public programs and policies. Development of a national strategy in the U.K. is in its infancy. Australia's public policy on FAS appears to reflect the belief that the prevalence of FAS is low and its strategy focuses on reducing alcohol consumption, rather than on FAS. Legislation requiring warning labels on alcoholic products has been passed in the U.S. and proposed in Canada. Neither the U.K. nor Australia have any such legislation. Finally, while both Canada and the U.S. have endorsed a policy of abstinence from alcohol during pregnancy, neither the U.K. nor Australia has comparable guidelines. The third issue identified in this paper, prevention, intervention, and education initiatives, highlights the fact that both Canada and the U.S. have numerous campaigns, organizations, public education efforts, and a high degree of government funding to help combat FAS. The U.K. has a minimal level of such initiatives and a website developed by a group of parents constitutes the main source of education on the effects of FAS. Australia has no public education, professional training, public policy, management programs, or services for people with FAS or their families, but is showing signs of greater awareness through activities such as those of the National Fetal Alcohol Syndrome workshop that was conducted in 2002.

Recommendations

Several recommendations arise from an examination of the mechanisms through which awareness of FAS is generated. Prevention of FAS entails professional, government, and public awareness of the problem. The following suggestions provide steps toward achieving this goal.

Physician education and the health care system. The threshold of exposure at which fetal damage occurs has not been determined. Nevertheless, physician education around the development of a consensus of "how much" alcohol consumption is "too much" during pregnancy is crucial. A survey of pediatricians, obstetricians, and family practice physicians in Michigan revealed that although these professionals are in agreement about the effects of drinking during pregnancy, they are misinformed as to the true level of risk (Abel & Kruger, 1998). The survey reported that 41% of physicians placed the threshold for FAS at one to three drinks per day while 38% placed the threshold at one or fewer drinks per day (Abel & Kruger). Both opinions directly contradict the Surgeon General's advice that women not consume any alcoholic beverages during pregnancy because of the risk of birth defects. In other words, abstinence is not always recommended. As professionals continue to debate safe levels, women will continue to remain confused about their options. It is recommended that base/universal physician education be provided to help reduce possible confusion and increase the correct diagnosis of FAS. It also recommended that pregnant women be screened for alcohol use during prenatal visits. Women who test positive, or prove to be at-risk could be referred for counseling and treatment (Bagheri, Burd, Masrtsolf, & Klug, 1998). In addition to physician responsibility, other institutions such as educational, social, and correctional services2 should ensure that individuals who come into contact with their organization receive the information and help they require to maximize safer use of alcohol.

Improved Public Health Strategy. Research by Abel suggests that the most effective public health strategy for reducing FAS is a combination of public health messages that target alcohol abuse, coupled with higher taxes on alcoholic beverages. Recent studies have shown that heavy drinking and binge drinking are sensitive to price changes (Abel, 1998). It is recommended that government tax alcohol and use the proceeds to fund greater public awareness of FAS.

Legislated use of warning labels. Studies have shown that alcohol beverage warning labels have increased awareness of the risks involved with alcohol consumption during pregnancy (Greenfield & Kaskutas, 1993). However, over time the alcohol warning labels have become commonplace and the message is often overlooked. Changing the appearance (i.e., size, colour, etc.) and rotating different warning labels on alcoholic beverage containers may help prolong awareness and decrease the number of women who expose their fetuses to alcohol.

Continued research to block/minimize alcohol effects. When prevention fails, early intervention is key. Research into the underlying mechanisms through which alcohol damages the fetus could help to predict which infants are most at risk for alcohol exposure. The goal is to identify new ways of blocking or mediating alcohol's harmful effects (Christensen, 2000).

Communicate messages by aligning descriptive and injunctive norms. Cialdini (2003) provides some guidelines for optimizing persuasive communications. From a social psychological perspective, a communicator who sends a message about the high frequency of a socially disapproved activity (e.g., consuming alcohol during pregnancy) will often succeed (paradoxically) in increasing the frequency of the activity. The message inadvertently implies that the behaviour is normative. Aligning injunctive norms (perceptions of which behaviours are typically approved or disapproved) with descriptive norms (what behaviours are typical or atypical) will increase persuasive efforts. The idea is that people tend to be motivated by what is perceived to be socially approved as well as by what is popular. Thus it is recommended to move forward with efforts that depopularize drinking during pregnancy.

Obtain objective information about levels of FAS awareness among the public and/or professional groups. The observation that that low FAS prevalence rates and the relative dearth of policies concerning prenatal alcohol exposure in the U.K. and Australian stems from a lack of public awareness is an inference as opposed to a datadriven conclusion. There do not appear to be objective sources of information that confirm this belief. It is important that these countries determine the extent of public and professional awareness through credible sources (e.g., surveys) that can be used to justify training programs and public education activities.

Future Directions

Warren and Foudin (2001) recommend research on the development of in-utero approaches to prevent or minimize alcohol-induced prenatal injury. At the Hospital for Sick Children in Toronto, a clinical trial is underway that will assess the efficacy and cost-effectiveness of therapeutic doses of vitamins C and E in pregnant alcohol-using women. This particular study involves a long-term (multiyear) randomized controlled design with repeated neurological and cognitive assessments in the offspring (Brien et al., 2002).

Additional topics for research include ways to improve clinical recognition of women's at-risk drinking behaviour, and the development of strategies to address the neurodevelopmental and learning problems of children with FAS and ARND. Research also should investigate cross-cultural comparisons of drinking behaviours to assess the factors (e.g., political, historical, psychological) associated with the differences in alcohol consumption.

Résumé

La consommation d'alcool par la mère pendant la grossesse place le foetus à risque pour plusieurs anomalies neurologiques et troubles fonctionnels. Ces déficits sont entièrement évitables si la mère s'abstient de l'usage d'alcool pendant la grossesse. Néanmoins, il est estimé que la conséquence la plus sévère de la consommation d'alcool prénatale, le syndrome d'alcoolisme foetal (SAF) a une incidence mondiale de 0.97 cas par 1000 naissances (voir May & Gossage, 2001). Cet article examine l'attention portée à ce problème au Canada, aux États-Unis, au Royaume-Uni, et en Australie selon trois dimensions : 1) la relation entre les taux de consommation d'alcool et l'incidence de SAF ; 2) l'action gouvernementale et la mise en place de politiques ; et 3) les initiatives d'intervention et de prévention, ainsi que les programmes éducatifs. L'étendue des connaissances dans chaque pays a une relation dynamique avec le niveau d'activité de recherche, l'importance de la mise en place de stratégies politiques, et les initiatives menant à des programmes éducatifs. Présentement, le Canada et les États-Unis ont des niveaux d'activité de recherche plus élevés ainsi qu'une reconnaissance claire du problème. . L'activité an Royaume-Uni et en Australie est plus remarquable au niveau communautaire, bien qu'une tendance vers une plus grande sensibilité publique et professionnelle soit présente.

1 All figures refer to consumption rates as of 2000. While the rate for a specific country may have changed somewhat since then, the relative differences between countries have remained stable.

2 Moore and Green (2004) describe judicial efforts to grapple with the challenges posed by FAS persons in the criminal justice system. Typically, police, prosecutors, defence counsel, judges and the general public are profoundly uninformed about the disorder. Training and education are crucial.

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CHRISTINA E. KYSKAN

TIMOTHYE. MOORE

York University

Correspondence should be addressed to Timothy E. Moore, PhD, C Psych, Professor and Chair, Department of Psychology, Glendon College, York University, 2275 Bayview Ave., Toronto, Ontario, Canada M4N 3M6 (E-mail: TimMoore@glendon.yorku.ca).

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