Using Supported Decision-Making to Promote Value-Aligned Research Participation.

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 no...

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Publicado en:Journal of Law, Medicine & Ethics Vol. 54; no. 2; pp. 27 - 37
Autores principales: Pan, Shen, Dinerstein, Robert D., Wendler, David
Formato: Journal Article
Publicado: Cambridge University Press Summer2026
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Summer2026
      vid: 54
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      pub: Cambridge University Press
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        10.1017/jme.2025.10188
        194133286
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        atl: Using Supported Decision-Making to Promote Value-Aligned Research Participation.
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        au:
          Pan, Shen
          Dinerstein, Robert D.
          Wendler, David
        affil: Department of Bioethics, National Institutes of Health, United States
      sug:
        subj:
          Persons with Disabilities Psychosocial Factors
          Research Subjects Psychosocial Factors
          Consent (Research)
          Decision Making, Shared
          Clinical Research
          Autonomy
          Decision Support Techniques
          Self Assessment
          Personal Values
          Decision Making
          Dialectical Behavior Therapy
          Conversation
      ab: 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.
      pubtype: Academic Journal
      doctype: Journal Article
      ougenre: Article
    language: English
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