Comments and Reflections on Ethics in Screening for Biomarkers of Prenatal Alcohol Exposure

Zizzo, Natalie; Pietro, Nina Di; Green, Courtney; Reynolds, James N.; Bell, Emily; Racine, Éric

doi:10.1111/acer.12115

Cited by 38 publications

(34 citation statements)

References 18 publications

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“…93 Early diagnosis and intervention are associated with improved outcomes for children with FASD, 43 and thus it could be argued that a test with high sensitivity could be favored over specificity in this context because it may facilitate appropriate monitoring and follow-up among children with positive PAE screens. However, PAE is a highly emotive topic, and false-positive errors may lead to stigmatization and unnecessary burden on health care resources, and may even be used in legal proceedings against mothers.…”

Section: Discussionmentioning

confidence: 99%

“…Given the implications of both types of diagnostic error, various authors have suggested that both high sensitivity and specificity are a prerequisite for the introduction of PAE screening. 55,93,96 …”

Section: Discussionmentioning

confidence: 99%

“…More research is required to establish which method is most feasible and acceptable to stakeholders, including clinicians, policy makers, and families. 93,94,107,108 Assay methods for the biomarkers included in this review were highly variable. This is likely to account for some of the observed heterogeneity in findings.…”

Section: Discussionmentioning

confidence: 99%

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Objective Measures of Prenatal Alcohol Exposure: A Systematic Review

McQuire¹,

Paranjothy²,

Hurt³

et al. 2016

Pediatrics

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CONTEXT: Objective measurement of prenatal alcohol exposure (PAE) is essential for identifying children at risk for adverse outcomes, including fetal alcohol spectrum disorders. Biomarkers have been advocated for use in universal screening programs, but their validity has not been comprehensively evaluated. OBJECTIVE:To systematically review the validity of objective measures of PAE. DATA SOURCES:Thirteen electronic databases and supplementary sources were searched for studies published between January 1990 and October 2015.STUDY SELECTION: Eligible studies were those that evaluated the diagnostic accuracy of objective measures of PAE.DATA EXTRACTION: Three reviewers independently verified study inclusion, quality assessments, and extracted data. RESULTS:Twelve studies met inclusion criteria. Test performance varied widely across studies of maternal blood (4 studies; sensitivity 0%-100%, specificity 79%-100%), maternal hair (2 studies; sensitivity 19%-87%, specificity 56%-86%) maternal urine (2 studies; sensitivity 5%-15%, specificity 97%-100%), and biomarker test batteries (3 studies; sensitivity 22%-50%, specificity 56%-97%). Tests of the total concentration of 4 fatty acid ethyl esters (in meconium: 2 studies; in placenta: 1 study) demonstrated high sensitivity (82%-100%); however, specificity was variable (13%-98%).LIMITATIONS: Risk of bias was high due to self-report reference standards and selective outcome reporting.CONCLUSIONS: Current evidence is insufficient to support the use of objective measures of prenatal alcohol exposure in practice. Biomarkers in meconium and placenta tissue may be the most promising candidates for further large-scale population-based research. a Division of Population Medicine and b Specialist Unit for Review Evidence, Cardiff University, Cardiff, United KingdomMs McQuire developed the draft protocol and search strategy, data extraction sheet, and quality coding criteria; carried out study selection, data extraction, quality assessment, and evidence synthesis; and prepared the initial manuscript and subsequent revisions; Dr Paranjothy developed the initial concept for the study, contributed to development of the protocol, extracted data, verifi ed study inclusion decisions and quality assessments, and reviewed and revised the manuscript; Dr Hurt contributed to development of the protocol, extracted data, verifi ed study inclusion decisions and quality assessments, and reviewed and revised the manuscript; Ms Mann contributed to the design of the search strategy and reviewed and revised the manuscript; Dr Farewell provided statistical advice and reviewed and revised the manuscript; Dr Kemp contributed to development of the protocol and reviewed and revised the manuscript; and all authors approved the fi nal manuscript as submitted.This review has been registered at the PROSPERO international prospective register of systematic reviews (www. crd. york. ac. uk) (identifi er CRD42014015420).

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Objective Measures of Prenatal Alcohol Exposure: A Systematic Review

McQuire¹,

Paranjothy²,

Hurt³

et al. 2016

Pediatrics

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“…Being proactive in discussions of alcohol use with male and non-pregnant female patients of all backgrounds is also important to reducing the many potential harms of alcohol consumption, and this universal approach may reduce feelings of being targeted or stigmatized. 49 …”

Section: How To Communicate Prevention Messages Given the Potential Fmentioning

confidence: 99%

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

Zizzo

Racine

2017

Can J Public Health

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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.

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“…The ethical and legal issues raised by diagnosing FASD on the basis of self-reported maternal drinking during pregnancy also apply to the use of putative biomarkers, such as meconium tests, for detecting prenatal exposure to alcohol in the fetus or newborn baby [55,56]. These tests may establish if a child has been exposed to alcohol in utero more accurately than women's self-reported drinking but they raise similar considerations over the comparative 'rights' of the mother and her child.…”

Section: Social and Ethical Implications Of Diagnosing Fasdmentioning

confidence: 99%

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

Lucke

Hall

2014

Neuroethics

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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.

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Comments and Reflections on Ethics in Screening for Biomarkers of Prenatal Alcohol Exposure

Cited by 38 publications

References 18 publications

Objective Measures of Prenatal Alcohol Exposure: A Systematic Review

Objective Measures of Prenatal Alcohol Exposure: A Systematic Review

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

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

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