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...
| Publicado en: | Journal of Law, Medicine & Ethics Vol. 54; no. 2; pp. 27 - 37 |
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| Autores principales: | , , |
| Formato: | Journal Article |
| Publicado: |
Cambridge University Press
Summer2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=194133286&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 194133286 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10731105 JME jtl: Journal of Law, Medicine & Ethics issn: 10731105 maglogo: N pubinfo: dt: Summer2026 vid: 54 iid: 2 pid: 15979 pub: Cambridge University Press artinfo: ui: 194133286 10.1017/jme.2025.10188 194133286 ppf: 27 ppct: 10 formats: tig: atl: Using Supported Decision-Making to Promote Value-Aligned Research Participation. aug: 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 refInfo: holdings: @attributes: islocal: N |
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