A Bio-Social and Ethical Framework for Understanding Fetal Alcohol Spectrum Disorders

Abstract

The diagnosis of Fetal Alcohol Spectrum Disorders (FASDs) is embedded in a matrix of biological, social and ethical processes, making it an important topic for crossdisciplinary social and ethical research. This article reviews different branches of research relevant to understanding how FASD is identified and defined and outlines a framework for future social and ethical research in this area. We outline the character of scientific research into FASD, epidemiological discrepancies between reported patterns of maternal alcohol consumption during pregnancy and the incidence of FASD, and the social and ethical considerations that may impact on who is, and is not, diagnosed. We highlight what further research investigating FASD diagnostic processes, as well as the multi-generational impacts of FASD, is needed. Important research priorities are to: 1) enumerate the variety of stakeholders involved in seeking FASD diagnoses; 2) understand the experiences and perspectives of mothers from different backgrounds who have consumed alcohol during pregnancy and their affected children; and 3) collect health histories of maternal alcohol consumption in families to determine the effect of FASD at sub-cultural and cultural levels.

Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women’s autonomy

“…Prevention messaging thus risks perpetuating stigma and promoting the idea that women who give birth to children with FASD are irresponsible and careless mothers who are at fault. 5,[18][19][20] The risk of perpetuating stigma is heightened when prevention messaging neglects both the factors that may lead a woman to drink while pregnant (e.g., social pressures, being unaware of or not wanting to reveal the pregnancy, coping strategies) 21 and other factors that can modulate the susceptibility to the development of an FASD (e.g., nutrition, smoking, and socio-economic effects).…”

Identifying alcohol and other drug use during pregnancy: outcomes for women, their partners and their children

“…For example, if a duty of care were to be imposed on expectant mothers, any action taken by pregnant women, irrespective of how mundane this may be, could be subject to judicial scrutiny, and it would be extremely difficult to identify the circumstances in which mothers would have breached their duty to their unborn children (Do & Mapulanga-Hulston, 2013). Meurk, Lucke and Hall (2014) have observed that there is a growing body of legal decisions arising from actions taken in attempts to impose medical treatment on pregnant women. They discuss the tendency to make pregnant women's bodies the subject of state surveillance, particularly in countries such as the United States and Finland, where women can be subject to compulsory commitment and/or incarceration if their AOD use is deemed to be potentially harmful to the foetus.…”

“…They discuss the tendency to make pregnant women's bodies the subject of state surveillance, particularly in countries such as the United States and Finland, where women can be subject to compulsory commitment and/or incarceration if their AOD use is deemed to be potentially harmful to the foetus. This kind of regulation of women can be seen to grant certain legal rights to foetuses, where the rights of the foetus are deemed superior to those of the mother, and the state's assumed authority to protect the foetus overrules the interests of the mother (Meurk et al, 2014). Criminalisation of maternal substance use threatens women's autonomy, and the status of women as equal citizens who are entitled to protection under the law may further jeopardise infant health and wellbeing, may lead women to avoid antenatal care, may unfairly target already-marginalised groups, and does not necessarily prevent substance abuse among women (Zizzo, Di Pietro, Green et al, 2013).…”

“…In some American states there is a tendency to make pregnant women's bodies the subject of state surveillance, and women can be committed or incarcerated if their AOD use is considered potentially harmful to the foetus. In this context the rights of the foetus are deemed superior to those of the mother and the state's assumed authority to protect the foetus overrules the interests of the mother (Meurk et al, 2014).…”

“…An increased emphasis has also been placed by antenatal services on the early identification of substance use in pregnancy by screening for substance use as part of antenatal care. However, some authors and practitioners have expressed concerns about an apparent increasing tendency to make pregnant women's bodies the subject of state surveillance, potentially leading to situations where the rights of the foetus are deemed superior to that of the mother (Meurk, Lucke & Hall, 2014).…”