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
Mots Clés: ensemble des troubles causés par l’alcoolisation fœtale, ethique, santé des femmes, soins de santé préventifs, autonomie personnelle
Résumé
L’ensemble des troubles causés par l’alcoolisation fœtale (ETCAF) est une forme prépondérante de retard de développement neurologique au Canada, touchant environ 3 000 bébés par année. L’ETCAF induit une gamme d’incapacités qui entraînent des coûts importants pour les personnes touchées, les familles et la société. L’exposition à l’alcool in utero est une condition nécessaire au développement de l’ETCAF, ce qui a conduit à la description que l’ETCAF s’avère « complètement évitable ». Cependant, il existe d’importants défis éthiques associés à la prévention de l’ETCAF. Ces défis portent sur ce qui devrait être communiqué au sujet des risques de la consommation d’alcool pendant la grossesse, compte tenu de l’incertitude scientifique persistante sur les effets de l’exposition prénatale à l’alcool, et la manière de communiquer ces risques compte tenu du risque de stigmatisation chez les femmes qui donnent naissance à des enfants avec un trouble causé par l’alcoolisation fœtale ainsi que chez les enfants et les adultes atteints par l’ETCAF. Dans cet article, nous partageons de premières réflexions sur la façon dont les médecins de première ligne peuvent aborder ce défi complexe. Premièrement, nous recommandons la divulgation des preuves scientifiques aux femmes et l’adaptation de l’information offerte aux femmes enceintes. Deuxièmement, nous proposons une approche contextuelle, axée sur le patient et la compassion pour assurer que des conseils appropriés soient donné aux patients d’une manière favorable et non stigmatisante.
Footnotes
Acknowledgements: We acknowledge the support froma Kids Brain Health Network (NeuroDevNet) grant (ER), and a FRQ-S (Fonds de recherche du Québec-Santé) career award (ER). The authors thank John Aspler, Katrina Hui and Dearbhail Bracken-Roche for helpful comments on a previous version of this manuscript as well as Sonja Chu for editorial assistance.
Conflict of Interest: None to declare.
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