The Ethical Importance of Assent in Adults with Decisional Incapacity
Videocast
David Wendler
NIH Webinar, 17 October 2024
Description
Our speaker for this session is Dr. David Wendler, senior investigator, and head of the section on research ethics in the NIH Clinical Center Department of Bioethics.

Topics addressed:

• Ethical background about why it is important to consider whether obtaining assent/respecting dissent in adults who are unable to provide consent for research is appropriate
• When is obtaining assent appropriate vs. not?
• How would they conduct such an assent process
• The difference between assent and dissent

Capacity to consent: a scoping review of youth decision-making capacity for gender-affirming care
Systematic Review
Loren G. Marino, Katherine E. Boguszewski, Haley F. Stephens, Julia F. Taylor
BMC Medical Ethics, 8 October 2024
Open Access
Abstract
Background
Transgender and gender expansive (TGE) youth often seek a variety of gender-affirming healthcare services, including pubertal suppression and hormone therapy requiring that TGE youth and their parents participate in informed consent and decision making. While youth must demonstrate the ability to understand and appreciate treatment options, risks, benefits, and alternatives as well as make and express a treatment choice, standardized approaches to assess the capacity of TGE youth to consent or assent in clinical practice are not routinely used. This scoping review identified the currently available data regarding adolescent capacity to consent to gender-affirming medical treatments.
Methods
Articles relevant to assessing adolescent capacity for clinical decision-making were identified using OVID Medline, Web of Science, and PubMed. Articles were reviewed and thematically analyzed.
Results
Eight relevant articles were identified using three tools for measuring adolescent clinical decision-making capacity: Measure of Understanding, Measure of Competence, and MacArthur Competence Assessment Tool (MacCAT). These studies explored hypothetical treatment decisions, mental health treatment decisions, HIV treatment decisions, genetic testing decisions, and gender-affirming medical decisions. Only one study specifically examines the capacity of TGE youth to consent to medical treatments. Age was correlated with capacity in most, but not all studies. Other studies found cognitive measures (IQ, literacy, numeracy) may impact important aspects of capacity (understanding and reasoning).
Conclusions
For clinicians caring for TGE youth, tools such as the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) may prove useful, in conjunction with consideration of youth developmental abilities and utilization of shared decision-making practices. A standardized, collaborative approach to assessing TGE youth capacity would benefit TGE youth and their parents, and allow clinicians to more easily resolve ethical concerns.

Editor’s Note: After assessing the observations and arguments made in this paper, we are reaching out to the corresponding author for clarification.

Capacity, autonomy, and risk: reflecting on asymmetries in capacity to consent and capacity to refuse
Jonathan Pugh
Ethical Theory and Moral Practice, 2024
Abstract
There has been renewed interest in whether we should understand standards of decision-making capacity (DMC) to be risk relative. Critics of risk-relative standards often highlight a puzzling asymmetry that they imply; a patient may have the requisite DMC to consent to a treatment that is in their best interests, whilst lacking the requisite DMC to refuse that same treatment, given the much higher risk that this would entail. Whilst some have argued that this asymmetry suggests that risk-relative standards are nonsensical, in this paper I defend a ‘quality of evidence’ view of such standards. I begin by outlining DMC’s purported gate-keeping role in medical ethics, and identifying three key normative claims that undergird this role. I then explain how two competing theories of risk-relative standards are incompatible with at least one of these claims. Drawing on Douglas’ distinction between standards of ‘true capacity’ and standards invoked in the ‘test’ for capacity, I then outline my ‘quality of evidence’ view. I explain how the view is compatible with the aforementioned normative claims and outline the nature of the asymmetry it implies. I conclude by responding to the objection that there is no meaningful distinction between ‘true capacity’ and the ‘test’ for capacity.

Editor’s note: The distinction between the standards of ‘true capacity’ referenced in this abstract refer to arguments made by Thomas Douglas in his article Pragmatic argument for an acceptance-refusal asymmetry in competence requirements.