Fetal alcohol spectrum disorder in the Canadian media: Key stakeholder perspectives on diagnosis, stereotypes, and discourse
John Aspler (Pragmatic Health Ethics Research Unit, McGill University); Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal, McGill University); Natalie Zizzo, MSc (Pragmatic Health Ethics Research Unit, at the time of the study); Emily Bell, PhD (Pragmatic Health Ethics Research Unit, at the time of the study); Nina Di Pietro, PhD (Douglas College); James Reynolds, PhD (Queen’s University)
Canadian Institutes of Health Research (CIHR); Fonds de recherche du Québec – Santé (FRQ-S); Kids Brain Health Network (KBHN)
FASD, a complex diagnosis covering a wide range of neurodevelopmental disabilities, results from a fetus’ exposure to alcohol in the womb. Most Canadians know that FASD exists and that drinking alcohol during pregnancy can harm a fetus, but are less informed about how FASD manifests and how it impacts the lives of individuals and their families. Given this gap in knowledge, the media, a common source of information, could play a key role in shaping the way the public understands FASD. In addition, incomplete or insensitive portrayals could provoke unintended consequences, including the generation or perpetuation of stigma toward individuals with FASD, as well as women who drink while pregnant (who face stigma given the connection between drinking alcohol and FASD outcomes).
To inform evidence-based strategies that could positively influence public dialogue about FASD, we undertook a project to analyze Canadian media discourse about FASD, alcohol, and pregnancy, as well as to discuss our findings with key FASD stakeholders: 1) adults with FASD; 2) parents of people with FASD; and 3) healthcare professionals with experience caring for people with FASD and their families. This study explored participant experiences with FASD diagnosis, with stereotypes associated with FASD and alcohol consumption during pregnancy, as well as their reflections on news media coverage.
- Aspler John, Zizzo Natalie, Bell Emily, Di Pietro Nina, Racine Eric. Stigmatisation, exaggeration and contradiction: An analysis of scientific and clinical content in Canadian print media discourse about fetal alcohol spectrum disorder. Canadian Journal of Bioethics / Revue canadienne de bioéthique, 2019; 2(2):23-35. Read article.
- Aspler John. Making research more ethical for adults with fetal alcohol spectrum disorder: A story of stakeholder engagement, accommodation, and inclusion. In: M. Ariel Cascio and Eric Racine (Eds.). Research involving participants with cognitive disability and difference: Ethics, autonomy, inclusion, and innovation, Oxford: Oxford University, 2019, p. 173-184. Read abstract here.
- Aspler John, Zizzo Natalie, Di Pietro Nina, Racine Eric. Stereotyping and stigmatising: A content analysis of Canadian print news media about fetal alcohol spectrum disorder. Canadian Journal of Disability Studies, 2018; 7(3): 89-121. DOI: 10.15353/cjds.v7i3.452 (chosen by CanFASD as one of their 35 ‘”Top FASD articles of 2018″: https://canfasd.ca/topics/top-papers). Read article.
- Zizzo Natalie, Racine Eric. Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women’s autonomy, Canadian Journal of Public Health, 2017; 108(4), e414-417. https://doi.org/10.17269/cjph.108.6048. Read article.
- Bell Emily, Andrew Gail, Chudley Albert, Di Pietro Nina, Reynolds James, Racine Eric. It’s a shame! Stigma against fetal alcohol spectrum disorder: Examining the ethical implications for public health practices and policies. Public Health Ethics, 2016; 9(1), 65-77. DOI: 10.1093/phe/phv012. Read article.
- Zizzo Natalie, Di Pietro Nina, Green Courtney, Reynolds James, Bell Emily, Racine Eric. Comments and reflections on ethics in screening for biomarkers of prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research 2013; 37(9), 1451‑1455. PMID: 23550996. Read article.