|Consent, Assent, and Decision-Making Capacity in Theory and Practice
|Saturday, May 23, 2020
|3:00 PM–3:50 PM
|Area: CBM; Domain: Service Delivery
|Chair: Jennifer Lynne Bruzek (University of Alabama in Huntsville)
|CE Instructor: Jennifer Lynne Bruzek, Ph.D.
Consent is embedded in the foundation of behavior analytic research and clinical practice. The processes of obtaining consent and assent require that researchers and practitioners share information regarding procedures in a way that is understandable to the recipient, which often appears to be a straight-forward process. Beyond the process of information sharing, though, are important matters related to whether or not someone has the capacity to consent or assent and whether that capacity has changed or will change over time. Additionally, it is often incumbent on researchers and practitioners to use their judgement when deciding whether or not assent has been provided noncoercively. This can be especially difficult when working with more vulnerable populations like individuals with developmental disabilities or dementia. This symposium will address issues related to decision-making capacity, commonly used capacity assessments and assent procedures, and socially valid methods for gaining assent that avoid coercive procedures. These issues will be discussed as they relate to older adults with dementia and children and adults with developmental disabilities.
Primer on Ethical and Practical Issues in Decision-Making Capacity Assessment
|SAMANTHA JO ZOHR (Eastern Michigan University), Claudia Drossel (Eastern Michigan University)
Determinations of decision-making capacity affect a person’s civil rights. When reasoning or decision-making capacity is in question, the onus is to balance autonomy and safety, maximizing self-reliance and independence while programming for assistance to prevent harm and maintain safety. Assessment of decision-making capacity is a research area, nevertheless, myths about decision-making capacity abound. Contrary to common belief, decision-making capacity is not unitary – it is specific to the task or domain in question (e.g., financial, medical, research consent or assent); cognitive difficulties do not automatically imply a lack of capacity; and individuals may lack capacity in one area of functioning while retaining capacity in other domains. Individuals may also transition from more to less assistance with decision-making, and capacity can be regained. This primer will review basic tenets of decision-making capacity and broadly introduce research and currently existing guidelines, considering the impact on a person’s life and advancing providers’ competency to navigate ethical and practical issues.
Capacity Assessments, Consent, and Assent in Behavioral Gerontology: Issues of Stimulus Control
|REBECCA A SHARP (Bangor University), Zoe Lucock (Bangor University)
Behavior-analytic research with adults with dementia is often conducted with people who lack the capacity to consent on their own behalf. However, commonly used capacity assessments and assent procedures are often ill-defined and subjective. Although there are some objective behavioral measures of dissent (e.g., moving away from the area, indices of unhappiness), assent procedures requiring vocal responses may produce verbal behavior under stimulus control of past or unobservable events. For example, “Can I sit with you today and show you some activities?” might result in the topographically-irrelevant response, “I told him that the birds are blue.” Researchers must then judge whether assent has been given, which can be uncomfortable. We will discuss the utility and pitfalls of our ethics committee-approved assent and consent procedures, and the use of compassionate misinformation in relation to the BACB Professional and Ethical Compliance Code for Behavior Analysts. We will present data showing the prevalence of vocal responses not under conditional control of discriminative stimuli used in assent procedures. We will discuss the need for socially valid, effective vocal and non-vocal methods for gaining assent from participants with dementia to enable people to be involved as much as possible in the consent process (i.e., have choice).
Consent and Assent Issues for Adults and Children With Neurodevelopmental Disabilities
|STEPHANIE M. PETERSON (Western Michigan University), Cody Morris (Salve Regina University ), Jessica Detrick (Western Michigan University), Shawn P. Quigley (Melmark), Kelsey Webster (Western Michigan University), Julia Mays (Western Michigan University)
Whether conducting behavior analytic research or providing behavior analytic services to individuals with developmental disabilities, it is important to gain consent for the provision of the procedures in question. Several issues arise when considering how informed consent is obtained to ensure individuals with developmental disabilities who are their own guardians are not coerced into providing consent. There are also several considerations that must be made to ensure consent is effectively informed. When adults with developmental disabilities are not their own guardians or when children with developmental disabilities are involved, they may not be able to legally provide consent. However, the majority of the time, such individuals must still provide assent. Thus, similar issues apply. This presentation will provide an overview of the concerns that can arise when attempting to gain consent or assent from individuals with developmental disabilities. We will provide a behavior analytic perspective on these issues, as well as present potential solutions behavior analysts might consider as ways to evaluate assent and consent that avoid coercive procedures.