Designing Consent Processes for Research With Older Adults Who May Lack Decisional Capacity: A Guide for Investigators.

Securing a participant's voluntary, informed consent is widely acknowledged as a requirement of ethical research. Yet, challenges can arise, particularly when a researcher seeks to enroll older adults who may lack the capacity to consent to research participation due to cognitive impairment. To addr...

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Publicado en:Journal of the American Geriatrics Society Vol. 74; no. 6; pp. 1715 - 1722
Autores principales: Largent, Emily A., Morain, Stephanie R., Karlawish, Jason
Formato: Artículo
Publicado: Wiley-Blackwell Jun2026
Materias:
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jun2026
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        atl: Designing Consent Processes for Research With Older Adults Who May Lack Decisional Capacity: A Guide for Investigators.
      aug:
        au:
          Largent, Emily A.
          Morain, Stephanie R.
          Karlawish, Jason
        affil:
          Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia Pennsylvania,, USA
          Berman Institute of Bioethics, Johns Hopkins University, Baltimore Maryland,, USA
          Department of Medicine, Department of Medical Ethics and Health Policy, Department of Neurology, University of Pennsylvania Perelman School of Medicine, Philadelphia Pennsylvania,, USA
      su:
        Self-efficacy
        Human research subjects
        Interviewing
        Informed consent (Medical law)
        Medical research
        Research ethics
        Patient selection
        Medical logic
        Cognitive testing
        Decision making in old age
        Conceptual structures
        Research methodology
      sug:
        subj:
          Self-efficacy
          Human research subjects
          Interviewing
          Informed consent (Medical law)
          Medical research
          Research ethics
          Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology)
          Patient selection
          Medical logic
          Cognitive testing
          Decision making in old age
          Conceptual structures
          Research methodology
      keyword:
        capacity
        informed consent
        research ethics
        capacity
        informed consent
        research ethics
      ab: Securing a participant's voluntary, informed consent is widely acknowledged as a requirement of ethical research. Yet, challenges can arise, particularly when a researcher seeks to enroll older adults who may lack the capacity to consent to research participation due to cognitive impairment. To address this challenge, this article outlines a nine‐step framework for designing consent processes: (1) identify the participants in the study and assess whether some or all might reasonably be expected to lack decisional capacity; (2) determine whether enrolling participants who lack decisional capacity is justifiable; (3) determine whether informed consent is needed for some or all research procedures; if consent is required, (4) prepare the information that will be provided to prospective participants; (5) make both the information and the consent process accessible; (6) specify how prospective participants' decisional capacity will be assessed; (7) specify how surrogates will be identified and contacted when prospective participants are determined to lack decisional capacity; (8) determine how to involve prospective participants who lack decisional capacity in the decision‐making process, such as through assent or dissent; and as appropriate, (9) consider how capacity and consent might change across the duration of the study. This framework can help researchers anticipate and address common challenges and ensure they fulfill ethical and regulatory obligations. Applications of this framework include writing the human subjects portion of grant applications, preparing protocols for submission to an Institutional Review Board, and informing research practice.
      pubtype: Academic Journal
      doctype: Article
      src: R
    language: English
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