Advocacy-Related Information Distortion: The Case of Fetal Alcohol Spectrum Disorders

Several problems are encountered in the paper “Fetal Alcohol Spectrum Disorders (FASD): A Policy Perspective”. ¹ The problems represent an apparent pattern of information distortion that may arise when championing a specific disorder. This pattern includes promoting the extremes of prevalence values, overattributing associated pathology and dysfunction to the disorder, and conflating disorder costs with implied cost savings if the disorder is prioritized, the latter conveyed without the support of intervention impact modeling. Although the advocacy may be well intentioned, resulting information distortion may misinform policy development.

Presenting extreme and potentially exaggerated ends of prevalence ranges emphasizes that the championed condition is not rare, implying that it should receive proportionally more attention and resources than rarer conditions. The author of the FASD article first asserts potential underestimation of FASD prevalence and then cites extreme values including one from a high-risk setting ² and another from a paper that used questionable methodology, the latter generating estimates based on assumptions that a certain fraction of various other disorders (e.g., Oppositional Defiant Disorder and Learning Disabilities) can be counted as FASD. ³ The latter assumption is of particular concern, given indications that the strength of relationship between prenatal alcohol exposure and mental disorders is overestimated. ⁴

The impact of questionable assumptions extends beyond misattributing symptoms and disorders and includes overattributing functional and social consequences to the championed disorder. In the case of FASD, this may take the form of emphasizing elevated rates of conflict with the law and incarceration. The underlying assumption appears to be that an FASD diagnosis automatically trumps other coexisting or causal factors related to conflict with the law (e.g., impulsivity, affiliation with delinquent peers, intoxication). Even if these and other factors are considered, they are too often co-opted and framed as “secondary” to FASD (a questionable assumption). This approach maximizes the relative importance of the championed disorder and provides a simplistic model to inform policy rather than acknowledging the complexity and multifactorial nature of outcomes such as conflict with the law.

Even with careful determination of prevalence values and accurate estimates of attributable fractions of associated problems, policy development also requires evidence of intervention effectiveness for the specific championed disorder. However, such critical evidence presentations may be sidestepped and instead dramatic cost estimates presented with the implication that costs would be substantially reduced or eliminated if only society would preferentially invest in interventions targeting the championed disorder. A recent systematic review which concludes that there is no compelling evidence supporting FASD-specific interventions ⁵ must also inform policy recommendations. It has also been argued that there is no compelling evidence for specialized FASD services as opposed to implementing evidence-informed interventions for identified needs of the individuals regardless of their specific disorder classification. ^6,7

While advocacy is an important contributor to policy development, scientific journals should, as their contribution, ensure the provision of a high standard of critical scientific analysis. Distorted information can lead to opportunity costs that undermine more accurate and effective initiatives and, in some cases, may inadvertently contribute to unintended harms. ⁸

John D. McLennan, MD, PhD, FRCPC Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada [e-mail] Peter Braunberger, PhD, MD, FRCPC Northern Ontario School of Medicine, Thunder Bay, Ontario, Canada