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

Abstract

Fetal alcohol spectrum disorder (FASD) is a leading form of neurodevelopmental delay in Canada, affecting an estimated 3000 babies per year. FASD involves a range of disabilities that entail significant costs to affected individuals, families, and society. Exposure to alcohol in utero is a necessary factor for FASD development, and this has led to FASD being described as "completely preventable". However, there are significant ethical challenges associated with FASD prevention. These challenges revolve around 1) what should be communicated about the risks of alcohol consumption during pregnancy, given some ongoing scientific uncertainty about the effects of prenatal alcohol exposure, and 2) how to communicate these risks, given the potential for stigma against women who give birth to children with FASD as well as against children and adults with FASD. In this paper, we share initial thoughts on how primary care physicians can tackle this complex challenge. First, we recommend honest disclosure of scientific evidence to women and the tailoring of information offered to pregnant women. Second, we propose a contextualized, patient-centred, compassionate approach to ensure that appropriate advice is given to patients in a supportive, non-stigmatizing way.KEY WORDS: Fetal alcohol spectrum disorders; ethics; women's health; preventive health services; personal autonomy La traduction du résumé se trouve à la fin de l'article.

Stigmatisation, Exaggeration, and Contradiction: An Analysis of Scientific and Clinical Content in Canadian Print Media Discourse About Fetal Alcohol Spectrum Disorder

“…A clear tension exists between 1) public health and medical guidelines requiring clear and actionable messages; 2) ensuring that marginalized women feel supported throughout their pregnancies; and 3) the importance of communicating the truth about research findingseven if that truth involves complexities. If media were to communicate only the clear but rigid message of abstinence in all cases, then the previously outlined issues of stigmatisation could arise, along with questions about paternalistic approaches to women's healthcare [53]; however, if contradictions are reported without care, some worry that this could provide women with a "license to drink" [50]. In our sample, contradiction more often appeared without comment between, rather than within, articles.…”

“…Although clear messaging and discourse that fosters negative public attitudes toward drinking while pregnant can be useful from a public health perspective (i.e., discouraging unhealthy behaviour at the population level), it could also unhelpfully stigmatise individual women who do drink [12,50]. The clarity and certainty of abstinence messaging could, in some cases, have an effect opposite to the one intended, rigidifying public opinion against women most in need of support, and driving those women 'underground' [31].…”

Prenatal Alcohol Screening During Pregnancy by Midwives and Nurses

“…In the current sample, the most influential perceived barriers to screening were patient denial/resistance to treatment, time limitations, and patient sensitivity to screening. It is possible that perceived patient denial, resistance, and sensitivity reflect providers’ concern about stigmatizing patients (Corrigan et al., ; Zizzo and Racine, ). Yet previous surveys showed that most pregnant women believe screening for alcohol use is important and do not mind being asked questions about their own use (Jones et al., ; Seib et al., ).…”

Self-report measure as a useful tool to identify prenatal substance use and predict adverse birth outcomes

“…Despite its significant and independent association between prenatal smoking and adverse birth outcomes, 22 cigarette smoking has been the most prevalent among pregnant women in our study, and has not been considered as stigmatizing to admit usage as admitting to illicit drug and alcohol use among pregnant women. 23,24 While our study findings are suggestive for providers to pay attention to nonresponders as potential evidence of under-reported substance use during pregnancy, our findings also indicate that selfreported cigarette smoking can be viewed potentially as an indicator of other substance and alcohol co-use leading to significantly adverse birth outcomes.…”