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Using Supported Decision-Making to Promote Value-Aligned Research Participation
Shen Pan1, Robert D Dinerstein2, David Wendler1
1Department of Bioethics, https://ror.org/01cwqze88National Institutes of Health, United States.
Abstract:
This article explores the potential of supported decision-making for helping individuals with intellectual or cognitive disabilities to make value-aligned or authentic decisions with respect to participation in clinical research. We argue that supported decision-making is valuable in this context not merely because it promotes self-determination, but also because it increases the likelihood that individuals' decisions align with what matters to them. To realize this potential, it is important to recognize and address situations in which individuals with intellectual or cognitive disabilities are at increased risk of making decisions that are contrary to their values. We focus on two such situations in particular: when the individual must integrate multiple, potentially competing values, and when the relevant values are insufficiently specified and require unpacking. These challenges can be met, we propose, by integrating dialectical support - a form of structured, dialogue-based assistance designed to help individuals explore and apply their values - into supported decision-making practices.
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