Think Pragmatically: Investigators' Obligations to Patient-Subjects When Research is Embedded in Care.

Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients and other stakeholders. However, it also has presented ethical challenges. An emerging challenge is how t...

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Bibliographic Details
Published in:American Journal of Bioethics Vol. 23; no. 8; pp. 10 - 22
Main Authors: Morain, Stephanie, Largent, Emily
Format: Journal Article
Published: Taylor & Francis Ltd Aug2023
Online Access:View this record in EBSCOhost
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      dt: Aug2023
      vid: 23
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      pub: Taylor & Francis Ltd
      place: Philadelphia, Pennsylvania
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        10.1080/15265161.2022.2063435
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        atl: Think Pragmatically: Investigators' Obligations to Patient-Subjects When Research is Embedded in Care.
      aug:
        au:
          Morain, Stephanie
          Largent, Emily
        affil: Johns Hopkins University
      sug:
        subj:
          Research Subjects
          Research Ethics
          Ethics, Professional
          Health Services Research
          Clinical Trials
          Case Studies
          Osteoporosis
          Atrial Fibrillation
          Emergency Care
      ab: Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients and other stakeholders. However, it also has presented ethical challenges. An emerging challenge is how to understand the nature and extent of investigators' obligations to patient-subjects. Prior scholarship on investigator duties has generally been grounded upon the premise that research and clinical care are distinct activities, bearing distinct duties. Yet this premise—and its corresponding implications—are challenged when research and clinical care are deliberately integrated. After presenting three case studies from recent pragmatic clinical trials, we identify six differences between explanatory trials and embedded research that limit the application of existing scholarship for ascertaining investigator duties. We suggest that these limitations indicate a need to account for the implications of usual care and to move beyond a narrow focus on the investigator-subject dyad, one that better reflects the team- and institution-based nature of contemporary health systems.
      pubtype: Academic Journal
      doctype: Journal Article
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    language: English
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