Stigma against fetal alcohol spectrum disorder - IRCM ethics experts study inadvertent stigmatization by public health initiatives for FASD

MONTRÉAL, Sept. 9, 2015 /CNW Telbec/ - Stigma against fetal alcohol spectrum disorder (FASD), a leading cause of developmental delay in North America, can lead to prejudice and discrimination or impact self-esteem for individuals with FASD and their families. A recent study by IRCM neuroethics experts, published in the journal Public Health Ethics, suggests that public health practices or policies may inadvertently increase the stigma experienced by those affected by FASD.

Alcohol use during pregnancy is a significant public health issue, and a number of strategies, both supportive and punitive, have been used to prevent alcohol consumption that has the potential to harm a fetus. However, concerns have been raised about the effectiveness of some of these strategies, as well their potential negative effects on underlying beliefs about FASD and the experiences of those affected, including children and adults with FASD, biological and adoptive parents, and foster caregivers.

"Very little research has been conducted on the factors that contribute to stigma for FASD individuals and how it impacts their lives," says Eric Racine, PhD, Director of the Neuroethics research unit at the IRCM. "Yet, stigma can act as a barrier to acceptance, social interaction, health care or adoption, and can become an important ethical consideration for assessing public health practices and policies for FASD."

To better understand the nature of stigma in FASD, IRCM researchers, in collaboration with leading Canadian experts in FASD, propose a descriptive model based on three themes: personal responsibility and blame towards biological mothers; felt and enacted stigma experienced by children and families; and anticipated life trajectories for individuals with FASD.

"We suggest that three main categories of stigma exist in FASD," explains Emily Bell, PhD, the study's first author and Research Associate at the IRCM. "The first is about directing all blame and responsibility towards the mothers, despite the fact this simplifies by leaps and bounds the context that often surrounds and influences women who drink. The second stigma, towards the child and families, is similar to that associated with autism and is based on assumptions that a child with FASD is a troublemaker. Finally, stigma is linked to negative stereotypes about the life path destined for youth with FASD and perceptions that they are likely to encounter trouble with the law."

To address concerns associated with inadvertent stigmatization by public health initiatives for FASD, the Montréal ethics experts examined public awareness campaigns and diagnostic practices.

"Awareness campaigns aim to prevent the only known cause of FASD, drinking during pregnancy," says Dr. Bell. "In doing so, however, they may also unintentionally increase the blame towards biological mothers and impact the broader experiences of all those affected by FASD. For example, if such campaigns fail to address social factors surrounding alcohol and neglect circumstances surrounding the behaviour (i.e., when a woman drinks before realizing she is pregnant), they could cause anxiety for women and increase reluctance to seek medical care for their pregnancy or drinking."

"As for diagnostic practices, Canadian guidelines developed in 2005 were a good starting point for the standard diagnosis of FASD across the country, but our research suggests clinicians must strive to minimize biases in diagnosis, despite the fact that the label might knowingly be stigmatizing," adds Dr. Bell.

"We recommend further analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD," concludes Dr. Racine. "Nevertheless, we believe public awareness campaigns should explicitly work to avoid increasing stigma. In addition, to address potential biases in clinical practices, training about FASD prevention, diagnosis, interventions and lifespan trajectory should be incorporated into professional education. "

Fetal alcohol spectrum disorder (FASD) describes a range of adverse developmental outcomes resulting from exposure to alcohol during pregnancy. Individuals with FASD can face a range of physical and mental health issues, which can include difficulties with organization, planning and cognitive flexibility that are important for adapting to the demands of daily adult life. The secondary effects of FASD (such as difficulties at school, trouble with the law, challenges living independently) influence the life experiences and quality of life for persons with FASD and their families. The primary prevention of FASD has been challenged by a lack of consensus, particularly around what policies to adopt in advising women about acceptable levels of alcohol during pregnancy. International FASD Awareness Day is observed on September 9.

This study was supported by NeuroDevNet, the Networks of Centres of Excellence of Canada and the Fonds de recherche du Québec – Santé (FRQS). It was conducted in collaboration with Gail Andrew from the University of Alberta, Nina Di Pietro from the University of British Columbia, Albert E. Chudley from the University of Manitoba, and James N. Reynolds from Queen's University. For more information, please refer to the complete article published online by Public Health Ethics: http://phe.oxfordjournals.org/content/early/2015/05/17/phe.phv012.full.

About Eric Racine
Eric Racine is Associate IRCM Research Professor and Director of the Neuroethics research unit. He obtained a PhD in applied human sciences (bioethics) from the Université de Montréal. Dr. Racine is Associate Research Professor in the Department of Medicine (accreditation in Social and Preventive Medicine and in Bioethics) at the Université de Montréal. He is also Adjunct Professor in the Department of Medicine (Division of Experimental Medicine) and the Department of Neurology and Neurosurgery at McGill University. Dr. Racine is an affiliate member of the Biomedical Ethics Unit at McGill University. He is a Research Scholar from the Fonds de recherche du Québec – Santé. Dr. Racine's research is designed to improve the ethical aspects of quality of care, research practices and public communications in the domain of clinical and basic neuroscience. For more information, visit www.ircm.qc.ca/racine.

About Emily Bell
Emily Bell is a Research Associate in the IRCM's Neuroethics research unit, and Adjunct Professor in the Department of Neurology and Neurosurgery at McGill University. She holds an MSc and a PhD in psychiatry from the University of Alberta. She is an investigator within the Neuroethics Core of NeuroDevNet, a Canadian Network of Centres of Excellence. In the past, Dr. Bell has been awarded support from the Social Sciences and Humanities Research Council, the Fonds de la recherche en santé du Québec (now the FRQS), and the Canadian Institutes of Health Research. Some of her current active research areas include investigating the relationship of vulnerability to informed consent in invasive psychiatric research trials, and ethical challenges in research and care for individuals with neurodevelopmental disorders.

About the IRCM
The IRCM (www.ircm.qc.ca) is a renowned biomedical research institute located in the heart of Montréal's university district. Founded in 1967, it is currently comprised of 35 research units and four specialized research clinics (cholesterol, cystic fibrosis, diabetes and obesity, hypertension). The IRCM is affiliated with the Université de Montréal, and the IRCM Clinic is associated to the Centre hospitalier de l'Université de Montréal (CHUM). It also maintains a long-standing association with McGill University. The IRCM is funded by the Quebec ministry of Economy, Innovation and Export Trade (Ministère de l'Économie, de l'Innovation et des Exportations).

SOURCE Institut de recherches cliniques de Montréal (IRCM)

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