Guardianship and clinical research participation: The case of wards with disorders of consciousness

Megan S. Wright, Michael R. Ulrich, Joseph Fins

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

We review relevant federal law about research on human subjects and state laws on guardian authority to determine whether guardians can consent on behalf of their wards to participation in research. The Common Rule is silent on the issue as are most state guardianship laws. Our analysis shows significant variation in guardians’ decision-making authority in the states that do regulate wards’ participation in research. We consider how the appointment of guardians for patients with disorders of consciousness (DOC) impacts such patients’ access to research. We assert that it is important that such persons be permitted to participate in research, so that their conditions and potential medical interventions can be studied, and that those with similar conditions can benefit from the knowledge gained from these studies. We argue that state guardianship laws should be adapted to specifically give guardians the authority to consent to research on behalf of wards who may be able to regain decisional capacity.

Original languageEnglish (US)
Pages (from-to)43-70
Number of pages28
JournalKennedy Institute of Ethics Journal
Volume27
Issue number1
DOIs
StatePublished - Mar 1 2017

ASJC Scopus subject areas

  • Health(social science)
  • Issues, ethics and legal aspects
  • Medicine(all)
  • Health Policy
  • History and Philosophy of Science

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