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Guardianship and Clinical Research Participation: The Case of Wards with Disorders of Consciousness.

TitleGuardianship and Clinical Research Participation: The Case of Wards with Disorders of Consciousness.
Publication TypeJournal Article
Year of Publication2017
AuthorsWright, Megan S., Ulrich Michael R., and Fins Joseph J.
JournalKennedy Inst Ethics J
Volume27
Issue1
Pagination43-70
Date Published2017
ISSN1054-6863
KeywordsBiomedical Research, Consciousness Disorders, Humans, Legal Guardians, Therapeutic Human Experimentation, United States
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.

DOI10.1353/ken.2017.0003
Alternate JournalKennedy Inst Ethics J
PubMed ID28366903

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