Ethical considerations for sharing aggregate results from pragmatic clinical trials.

A growing literature has explored the ethical obligations and current practices related to sharing aggregate results with research participants. However, no prior work has examined these issues in the context of pragmatic clinical trials. Several characteristics of pragmatic clinical trials may comp...

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Publicado en:Clinical Trials Vol. 22; no. 2; pp. 248 - 255
Autores principales: Morain, Stephanie R, Brickler, Abigail, Ali, Joseph, O'Rourke, Patricia Pearl, Spector-Bagdady, Kayte, Wilfond, Benjamin, Rahimzadeh, Vasiliki, Propes, Caleigh, Mehl, Kayla, Wendler, David
Formato: tables/charts Journal Article
Publicado: Sage Publications, Ltd. Apr2025
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Ethical considerations for sharing aggregate results from pragmatic clinical trials.
      aug:
        au:
          Morain, Stephanie R
          Brickler, Abigail
          Ali, Joseph
          O'Rourke, Patricia Pearl
          Spector-Bagdady, Kayte
          Wilfond, Benjamin
          Rahimzadeh, Vasiliki
          Propes, Caleigh
          Mehl, Kayla
          Wendler, David
        affil: Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA
      sug:
        subj:
          Clinical Trials Ethical Issues
          Decision Making, Ethical
          Communication
          Research Subjects
          Research Personnel
          Trust
          Respect
          Privacy and Confidentiality
          Access to Information
          Health Facilities
          Institutional Review
      ab: A growing literature has explored the ethical obligations and current practices related to sharing aggregate results with research participants. However, no prior work has examined these issues in the context of pragmatic clinical trials. Several characteristics of pragmatic clinical trials may complicate both the ethics and the logistics of sharing aggregate results. Among these characteristics include that pragmatic clinical trials may affect the rights, welfare, and interests of not only patient-subjects but also clinicians, meaning that results may be owed to a broader range of groups than typically considered in other research contexts. In addition, some pragmatic clinical trials are conducted under a waiver of informed consent, meaning sharing results may alert participants that they were enrolled without their consent. This article explores the ethical dimensions that can inform decision-making about sharing aggregate results from pragmatic clinical trials, and provides recommendations for that sharing. A central insight is that healthcare institutions—as key partners for the conduct of pragmatic clinical trials—must also be key partners in decision-making about sharing aggregate pragmatic clinical trial results. We conclude with insights for future research.
      pubtype: Academic Journal
      doctype:
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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