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胎儿酒精谱系障碍预防中的伦理挑战:科学不确定性、污名化以及对女性自主权的尊重。

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

作者信息

Zizzo Natalie, Racine Eric

机构信息

Neuroethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, QC.

出版信息

Can J Public Health. 2017 Nov 9;108(4):e414-e417. doi: 10.17269/cjph.108.6048.

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.

摘要

胎儿酒精谱系障碍(FASD)是加拿大神经发育迟缓的主要形式,每年估计影响3000名婴儿。FASD涉及一系列残疾,给受影响的个人、家庭和社会带来巨大成本。子宫内接触酒精是FASD发展的必要因素,这导致FASD被描述为“完全可以预防”。然而,FASD预防存在重大伦理挑战。这些挑战围绕着两个方面:一是鉴于目前关于产前酒精暴露影响的科学不确定性,应该如何传达孕期饮酒的风险;二是鉴于有可能污名化生育患有FASD孩子的女性以及患有FASD的儿童和成年人,应该如何传达这些风险。在本文中,我们分享关于初级保健医生如何应对这一复杂挑战的初步想法。首先,我们建议向女性如实披露科学证据,并为孕妇量身定制所提供的信息。其次,我们提出一种情境化、以患者为中心、富有同情心的方法,以确保以支持性、无污名化的方式向患者提供适当的建议。

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