Fetal alcohol spectrum disorders is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a (...) series of discussions with experts in the field, published literature, and medical ethicists. Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. The value for the concerned individuals of obtaining a FASD-related description of their condition – for instance, in terms of wellbeing – is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs. (shrink)

This book discusses and provides insight on the legal and ethical dilemmas of managing those with Fetal Alcohol Spectrum Disorder (FASD). This book provides a clear perspective for those clinicians and legal professionals who are working with those with this disorder, and correspondingly increases their understanding when arranging effective supports for this population. Historically, the primary focus on FASD has been on children. However, this is a lifelong disorder, and the implications of this disorder become even more prominent (...) and complex in adulthood. Those with this condition can struggle with impulsiveness, and a host of cognitive difficulties. This correspondingly impacts their independence and employability, and produces an elevated risk for homelessness and other residential issues, involvement in substance use, being exploited, development of behavioural issues, and subsequent legal difficulties. Their cognitive difficulties result in challenges for legal systems around the world to understand their issues, and to design appropriate remedial strategies, recommendations for treatments and supports, and even for understanding the failure of many of these individuals to be able to change their behaviours effectively. This produces various legal and ethical dilemmas, which are discussed in detail in this volume by 28 authors from Europe, New Zealand, and North America. These include discussions regarding the rights of the unborn child, the alcohol industry's duty to warn, whether small amounts of alcohol during pregnancy can be condoned, and even the current use of involuntary hospitalization for addicted mothers. Other chapters discuss the need for training on FASD for front line officers, use of lies during interrogation of those with FASD, medical and legal interventions for offenders with FASD, access to diagnostic services and follow-up supports, and whether FASD can be considered a mitigating factor for sentencing. Furthermore, caregivers also provide their stories regarding the daily dilemmas that are faced in raising those with FASD. (shrink)

This paper argues that social contexts of inequality are crucial to understanding the ethics of gestational harm and responsibility. Recent debates on gestational harm have largely ignored the social context of gestators, including contexts of inequality and injustice. This can reinforce existing social injustices arising from colonialism, socio‐economic inequality and racism, for example, through increased regulation of maternal behaviour. To demonstrate this, I focus on the related notions of the ‘future child’ and an obligation of easy rescue, which have been (...) used to discuss the ethics of gestational harm in the context of alcohol consumption during gestation and foetal alcohol spectrum disorder (FASD). I use a feminist perspective to evaluate these ideas and conclude that anyone concerned with remediation of social injustice has good reason to be suspicious of the notion of the future child in the context of gestational harm. (shrink)

Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (...) (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices. (shrink)

Stigma can influence the prevention and identification of fetal alcohol spectrum disorder, a leading cause of developmental delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. We reviewed social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint in matters of health practices and policies. We propose a descriptive model of stigma in FASD and note current knowledge gaps; discuss the (...) ethical implications of stigma based on two distinct criteria ; and describe two cases and the concerns associated with inadvertent stigmatization by public health initiatives for FASD. We recommend further empirical and ethical analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD. (shrink)

Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders. FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the (...) literature on stigmatization related to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping. (shrink)

The diagnosis of Fetal Alcohol Spectrum Disorders 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. (shrink)

A diagnosis of Fetal Alcohol Spectrum Disorder ascribes cause to developmental disability; however, there are logical issues in causation with ethical implications. This article focuses on the use of fallacious logic in FASD, focusing on the Canadian Guidelines for diagnosis, and knowledge translation issues from science to practice. The clinician’s logical fallacy is an ethical issue of veracity in the clinician–patient relationship; this then leads to issues of nonmaleficence, because the diagnosis in turn blames the mother for her child’s (...) difficulties. Suggestions for revised diagnostic practices that avoid allusions to causation and responsibility are discussed. (shrink)

An expanding policy framework aimed at monitoring alcohol consumption during pregnancy has emerged. The primary justification is prevention of harm from what is termed ‘prenatal alcohol exposure’ (PAE), by enabling more extensive diagnosis of the disability labelled fetal alcohol spectrum disorder (FASD). Here we focus on proposals to include biomarkers as a PAE ‘screening tool’, specifically those found in meconium (the first newborn excrement), which are discussed as an ‘objective’ measure of PAE.We ask the overarching question, ‘Can routine screening (...) of meconium to establish PAE be ethically or legally justified’, and we answer, ‘No’. To reach this conclusion, we discuss three areas. First, we consider the reasons why meconium screening should not be deemed ‘typical’ within the scope of accepted screening tools. We argue that given the aim and necessary timing of the screen, it cannot achieve what it promises. Second, we outline why patient autonomy and consent are not properly accounted for and cannot be reconciled with the ‘routinisation’ of the proposed ‘screening’. Last, we outline why the benefit of such a screen is not clear, focusing on the significance of trust in healthcare professionals (HCP) for the best interests of the future child and pregnant woman.While recognising the adverse effects of heavy alcohol consumption during pregnancy, we emphasise the case for robust ethical, legal and social considerations and the central need for trust between HCP and patients in maternity care. We conclude the permissibility of meconium screening has not been proven, and it is not justified. (shrink)

This book discusses how to deal ethically with people with Fetal Alcohol Spectrum Disorder in the police, courts and correctional services. Ethical and legal issues associated with the deficits of individuals with a brain disorders such as FASD are surfacing more and more frequently in criminal proceedings. People with FASD often have not been diagnosed and rarely exhibit any visible evidence of the disorder. It has been argued that this invisible disability puts them in a disadvantaged position in (...) the justice system, since the awareness of this condition is limited. The need to identify and to address FASD more effectively and the many ethical issues this raises within the context of the law is increasingly acknowledged within judicial and legislative branches, as well as in government departments, agencies and community programs that provide services to those with FASD and their caretakers and families. This is the first book to give to elaborate on ethical and legal issues of FASD. (shrink)

Brussen, Kerri Anne On 29 November 2012, one of the Standing Committees of the Commonwealth House of Representatives released a report on the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders in Australia. This article explores the findings and recommendations of this report. The Commonwealth parliamentary committee noted that FASD is a serious health issue in Australia. It therefore called for a National Plan of Action, education for health professionals, and public awareness campaigns to encourage women not to (...) drink when pregnant or when planning a pregnancy. Other recommendations included better management of FASD within education, disability services, and the criminal justice system. (shrink)

Fetal alcohol spectrum disorder is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this (...) article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD. (shrink)

Khalafzai, Rida Usman Harms of alcohol consumption are not limited to the consumer. For women, it poses a significant threat to their unborn child. This article discusses one type of alcohol-related harm to the fetus: the fetal alcohol spectrum disorders (FASD).

There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP research within the (...) Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

In this issue of the JME, age-old questions around how to balance the interests of mother and fetus are revisited in two separate contexts: alcohol consumption during pregnancy, and maternal request caesarean sections. Both have been the subject of recent controversy in the UK, with March 2022 seeing the introduction of new National Institute for Clinical Excellence Quality Standards on combatting foetal alcohol spectrum disorder 1; and the publication of the long-awaited Ockenden Review into a series of failures in NHS (...) maternity care.2 Both raise important questions about the role of healthcare professionals in policing women’s choices during pregnancy and childbirth, and of the importance of deference to and trust in those choices. In this issue’s Feature Article, Rebecca Bennett and Catherine Bowden explore recent proposals to enhance the screening of pregnant women in order to prevent instances of fetal alcohol spectrum disorder through more accurately determining the true prevalence of alcohol consumption during pregnancy.3 Public Health England has suggested research into tools such as blood biomarkers and meconium testing,4 which could better identify those women who are consuming alcohol ‘covertly’ and so make FASD diagnoses more straightforward. As Bennett and Bowden rightly suggest, such a move is unlikely to realise the kind of public health or welfare gains which would justify this level of interference with the women’s autonomy, and may even result in more harm through discouraging engagement with antenatal care. However even absent these very intrusive methods of surveillance, the precautionary principle which underpins such policies — namely that in the absence of evidence that any alcohol is safe, women should be instructed to avoid it altogether — is itself difficult to justify. The evidence on alcohol consumption during pregnancy is mixed. While it is widely accepted that heavy …. (shrink)

BackgroundPrenatal and early postnatal choline supplementation reduces cognitive and behavioral deficits in animal models of Fetal Alcohol Spectrum Disorder. In a previously published 9-month clinical trial of choline supplementation in children with FASD, we reported that postnatal choline was associated with improved performance on a hippocampal-dependent recognition memory task. The current paper describes the neurophysiological correlates of that memory performance for trial completers.MethodsChildren with FASD who were enrolled in a clinical trial of choline supplementation were followed for 9 (...) months. Delayed recall on a 9-step elicited imitation task served as the behavioral measure of recognition memory. Neurophysiological correlates of memory were assessed via event-related potentials.ResultsDelayed recall on EI was correlated with two ERP components commonly associated with recognition memory in young children: middle latency negative component and positive slow wave. No significant ERP differences were observed between the choline and placebo groups at the conclusion of the trial.ConclusionAlthough the small sample size limits the ability to draw clear conclusions about the treatment effect of choline on ERP, the results suggest a relationship between memory performance and underlying neurophysiological status in FASD. This trial was registered.1. (shrink)

The Internet has quickly gained popularity as a major source of health-related information, but its impact is unclear. Here, we investigate the extent to which advocacy websites for three neurodevelopmental disorders—cerebral palsy (CP), autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD)—inform stakeholders about treatment options, and discuss the ethical challenges inherent in providing such information online. We identified major advocacy websites for each disorder and assessed website accountability, the number, attributes, and accessibility of treatments described, and the (...) valence of treatment information. With the exception of FASD websites, we found that advocacy websites provide a plethora of information about a wide variety of readily available products and services. Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments. Many websites acknowledge corporate sponsors. While the majority do not overtly advertise or endorse specific brands, they also do not prominently display disclaimers about the nature and intent of treatment information. Thus, while advocacy websites are organized to serve as information clearinghouses, they implicitly appear to provide endorsement of selected treatments and services. We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information. (shrink)