The sound of silence: Fetal alcohol spectrum disorder

*This post was initially published on The Neuroethics Blog.

By Emily Bell, PhD

Dr. Emily Bell is Researcher at the Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM). Dr. Bell’s MSc and PhD research in Psychiatry at the University of Alberta focused on investigating brain activity in mood and anxiety disorders using functional magnetic resonance imaging (fMRI). Her postdoctoral work shifted her into the field of neuroethics, where she examined ethical and social challenges associated with deep brain stimulation in psychiatric disorders. As an investigator of the Neuroethics Core of NeuroDevNet, a Canadian Network of Centres of Excellence, Dr. Bell has been involved in a wide range of network activities and research in the area of pediatric ethics. This includes recent work on the implications of stigma for public health policies and practices in fetal alcohol spectrum disorder and ethical concerns associated with the transition of youth with neurodevelopmental disorders to adult health services. Dr. Bell has been awarded support from the Social Sciences and Humanities Research Council (SSHRC), the Fonds de la recherche en santé du Québec (FRSQ), the Canadian Institutes of Health Research (CIHR), and the Killam Trust. She is currently lead co-investigator on two CIHR grants, including one in the area of vulnerability and mental health research ethics.

Let me start by saying that I never planned to have a research or action agenda in ethics and fetal alcohol spectrum disorder. Fetal alcohol spectrum disorder (FASD), as an umbrella term, describes a range of adverse developmental outcomes resulting from exposure to alcohol during pregnancy. Sure, my graduate degrees in psychiatry were an entry to understanding the challenges experienced by vulnerable patients, the social and relational aspects of health, and the deep and enduring force of stigma. All this prepared me to some degree for the complex web of ethical and social tensions in the study of FASD. These tensions cut across disciplines and domains and touch on alcohol policy, public health initiatives, concepts of motherhood, of maternal/fetal rights, and of specialized care for persons with disability throughout the life course. I was fortunate, the sheer complexity of the issues at stake also gave way to a network of colleagues (NeuroDevNet, a Canadian Network of Centres of Excellence) who themselves were jack of all trades; scientists and physicians with a sincere interest in and powerful grasp of the ethical issues faced by policy makers, pregnant women, and those affected by prenatal alcohol exposure.

From neurodevnet.ca

FASD is a leading cause of developmental disability and a significant public health issue accompanied by substantial lifelong burden, especially through secondary disabilities (i.e., difficulties at school, trouble with the law, challenges living independently). One of the key challenges associated with developing a comprehensive strategy for managing and preventing FASD is the need for a coordinated approach across a variety of social systems (i.e., foster care system, criminal justice system, health systems). Moreover, despite the fact that prenatal alcohol exposure continues to be a prevalent cause of developmental disability it receives far less attention than some other neurodevelopmental conditions such as autism. It’s probably not hard to imagine why the field as a whole might suffer from a lack of concerted attention. The stigma associated with drinking during pregnancy is well known and can dissuade women who drink during pregnancy from seeking treatment or disclosing their drinking habits (Eggertson, 2013). We anticipate that this stigma also filters down to the child or the individual with FASD (Bell et al., under review). The moral elements potentially influencing the construction of fetal alcohol syndrome have been well characterized. Armstrong (1998) has described how the diagnosis risks becoming just another way to label women and children who are “beyond hope and destined to be societal problems”.

The perception that FASD is a preventable disorder (i.e., there is no more research or science to do to understand the solution to the problem) may have resulted in less research or investment in this area, leaving FASD as the “poor cousin” to other less stigmatized conditions. Of course, a mission to carve out more attention for FASD is also hampered by the fact that beliefs about the risk and acceptability of drinking during pregnancy vary considerably. This may lead to confusion about whether those in the field even have the same ideas about the problem itself, or if their priorities for research are aligned with those of the public. For instance, one study has shown that there are strongly divergent perspectives on risk related to drinking alcohol during pregnancy across countries, including in Canada and the United Kingdom (Drabble et al., 2011). Others have shown that policy statements about alcohol use during pregnancy in even English-speaking countries vary considerably (O’Leary et al., 2007). All this means that alcohol use during pregnancy and FASD receive disparate attention and incongruent focus in both policy and practice internationally, never mind the fact that different interpretations of risk and appropriate action abound in policies (i.e., policies of abstinence, or certain tolerances to non-risky patterns of drinking or low intake during pregnancy).

What of those individuals who are impacted by alcohol use during pregnancy such as the families (foster, adoptive, or biological), the children, youth and adults? Where are their voices in the academic literature to influence or guide policies or practices? In a study we conducted on stigma and FASD (Bell et al., under review), we were only able to identify a small literature where the voices of those affected by FASD had been captured. In one qualitative study conducted with children living with FASD, researchers alluded to the fact that some professionals had questioned the insight and ability of the children to even participate in the research (Stade et al., 2011). Unfortunately, research on those affected by FASD is hampered by a number of factors. First, for those in foster care (a reality for many children and youth living with FASD), a complicated set of foster protections govern the participation of subjects who are wards of the state. Second, individuals affected by FASD (children, families both biological and adoptive) may experience significant shame and stigma which dissuades research participation. Social sciences research especially may touch on sensitive topics. Indeed, strategies to manage privacy and confidentiality, where breaches have the potential to have strong social risks such as stigmatization, need to be carefully considered in this type of research.

Complicated policy and practice problems should take into account the voice of those most impacted by the effects of alcohol consumed during pregnancy even if barriers to research participation exist. There are important gains that could be made by opening up real dialogue with those affected by FASD and by pursuing social science research in their interests. For example, broad deliberation is needed about social factors impacting the diagnosis of FASD, about public health campaigns and risks of drinking during pregnancy, and stakeholder perspectives are needed before public health tools such as newborn screening for prenatal alcohol exposure is widely implemented. These are delicate social and medical issues, and the way in which we handle policy and practice in these areas expose the potential for significant social harms (i.e., removal of children from families, criminalization of women, uneven or culturally biased diagnostic practices, stigmatization, unfair treatment in the justice system). Guided by erroneous assumptions the right approach adopted for prevention or diagnosis may be potentially harmful. The meaningful engagement of individuals affected by FASD, women, and specialists in alcohol and drug use is needed.



References

Armstrong EM (1998) Diagnosing moral disorder: The discovery and evolution of fetal alcohol syndrome. Soc Sci Med, 47(12): 2025-2042.

Bell E, Andrew G, Chudley A, Di Pietro N, Reynolds J, Racine E. It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies, under review.

Drabble LA, Poole N, Magri R, Mbona Tumwesigye N, Li Q, Plant M (2011) Conceiving risk, divergent responses: Perspectives on the construction of risk of FASD in six countries. Subst Use Misuse, 46(8):942-958.

Eggertson L (2013) Stigma a major barrier to treatment for pregnant women with addictions. CMAJ, 185(18): 1562.

O’Leary CM, Heuzenroeder L, Elliott EJ, Bower C (2007) A review of policies on alcohol use during pregnancy in Australia and other English-speaking countries, 2006. Med J Aust, 186(9): 466-471.

Stade B, Beyene J, Buller K, Ross S, Patterson K, Stevens B, Sgro M, Ungar W, Watson W, Koren G (2011) Feeling different: The experience of living with fetal alcohol spectrum disorder. J Popul Ther Clin Pharmacol, 18(3): e475-e485.

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