A brief response to assent in applied behaviour analysis and positive behaviour support: ethical considerations and practical recommendations

In response to the recent publication titled, “Assent in Applied Behaviour Analysis and Positive Behaviour Support: Ethical Considerations and Practical Recommendations” (Breaux and Smith, 2023), we first write to commend the authors for outlining important information to consider when promoting decision-making and self-determination. While a good start, we want to advocate for a more complete discussion as there are, from our point of view, multiple considerations surrounding assent that have not garnered sufficient attention.

Breaux and Smith set out to define assent as well as offer recommendations for use within the methodological frameworks of applied behaviour analysis (ABA) and positive behaviour support (PBS), however, we were surprised to see key considerations omitted from their thesis as well as the implication that assent must be incorporated into all forms of treatment, regardless of circumstances. We believe that assent within the provision of ABA and PBS is often applicable; however, we submit that the following inquiries should be included in future scholarly work concerning assent.

Why do contemporary standards for assent differ between research and practice?

One reason standards for assent within research differ from those in the practice of ABA or PBS is because the two endeavors serve different functions. Human subjects research is concerned with exploring and learning and so the conditions the participant experiences are a function of the experiment itself, not necessarily what is deemed clinically or professionally recommended. In their recent paper on assent, Flowers and Dawes (2023) discuss some of the key differences in research versus practice. They remind us that assent in research is obtained prior to the individual’s participation because the study may not have any particular benefit to them and there may be drawbacks of participating—including adverse impacts on services or treatment they are receiving. They also discuss key features of behavior analytic treatment, including revision to treatment when the client is not attaining desired outcomes. Given the practice of high-quality ABA and PBS demands the incorporation of client choice, preferences, revision of approaches when outcomes are unrealized, perhaps the issue of assent is more currently relevant to research while service quality is more relevant to implementation and practice. Furthermore, ensuring services are of the highest quality possible is especially relevant when the recipient is legally entitled to them or when deemed medically necessary.

Are ABA and PBS services important or necessary?

Recent data provided by the Behavior Analyst Certification Board (BACB, 2023) indicate that 82.7% of certificants’ primary area of professional emphasis was accounted for within the areas of autism spectrum disorder, education, intellectual or developmental disabilities, and behavioural pediatrics. Unlike research, in which participation is fully elective, behavioural services for children are often provided in educational settings (PBS and ABA) or because of medical necessity (ABA). Concerning American education, all 50 states have compulsory attendance laws that begin in early elementary grades (range = 5–8 years old) and extend into high school (range = 16–18 years old) (National Center for Education Statistics, n.d.). Moreover, in these contexts, it is not unusual for service delivery to be incorporated into schooling and we are unaware of instances in the United States in which children with or without disabilities are given opportunities to assent to their K-12 schooling. As such, one potential downside to advocating for assent within ABA and PBS provided in school settings is it positions service recipients to be treated markedly different from other students who are not permitted to opt out of their educational services.

Many children diagnosed with developmental disabilities receive ABA services after a physician determines they are medically necessary. Understanding and discussing assent in this context is important; it has long been recognized in pediatric medicine that patients should be involved in clinical decision-making to the greatest extent possible. However, children, especially those younger than 13, are typically not offered choices if the treatment is considered necessary (e.g. appendectomy), has a high probability of success, and the parent has provided informed consent (Katz et al. 2016). The dominant approach to assent within the pediatric model of care includes incorporating it when children are participating in research, when the child reaches their late adolescent years, and when they are receiving treatment for chronic medical conditions—the latter of which involves an abundance of ongoing discussion and debate. In addition to accounting for the medical necessity of ABA services in a significant portion of cases, we also have concerns about promoting an idea that treats children with developmental disabilities altogether differently than typically developing, same-age peers. Like medical professionals, behavior analysts are ethically bound to modify treatment when patients are not progressing towards their goals, therefore treating them any different than other children in this regard appears problematic.

Who is authorized to determine if proposed assent methodology is appropriate?

The definitional examples presented by Breaux and Smith suggest that there are issues of legality at stake when assent is concerned, and so this raises a key issue. Especially in cases where the service recipient has limited communication, who possesses legal authority to determine what the customized approach to assent entails? Clearly it cannot be the service provider; their role may include providing input but not to serve as a legal proxy for client. We suspect this responsibility would fall to the individual’s legal guardian—the same person authorized to provide consent. However, this may prove problematic because the same person would be responsible for authorizing two potentially competing interests. While elective participation in research is one matter, it becomes more complex when legal eligibility for educational services or access to services of medical necessity could be impacted based upon withdrawal of assent.

Conclusion

Assent in research is a nuanced topic and assent within the provision of ABA and PBS services is highly complex. Setting aside assent, specifically, we believe it is more important than ever to promote self-determination, choice commensurate to one’s age, and independence. Our recommendation is to have further conversation on this topic, but with inclusion of some of the nuances we have raised here.

Eli T. Newcomb
Byron Wine
The Faison Center, Richmond, Virginia, USA

Disclosure statement

No potential conflict of interest was reported by the author(s)