Dignity of Risk, Reemergent Agency, and the Central Thalamic Stimulation Trial for Moderate to Severe Brain Injury

Joseph J. Fins, Megan S. Wright

Research output: Contribution to journalArticlepeer-review

Abstract

This article discusses the utility of Perske’s “dignity of risk” as a use-ful heuristic to explain the consent process for a study to evaluate central thalamic deep brain stimulation as a means to restore cognitive function in moderate to severe brain injury. Narratives of interviews with subjects and their families from a related BRAIN Initiative study reveal discordant views on risk, with subjects being more risk-tolerant than their loved ones. This is a challenge for families who remain protective of subjects who have recovered to the point that they are capable of independent decision-mak-ing. While the legal threshold for consent has been met, normative and psychological challenges remain as families accommodate themselves to the reemergent agency of the subject. Dignity of risk is a constructive framework to apprehend how families come to appreciate the primacy of the subject’s voice and affirm their reemergent agency following a devastating brain injury.

Original languageEnglish (US)
Article number86178
Pages (from-to)307-315
Number of pages9
JournalPerspectives in Biology and Medicine
Volume65
Issue number2
DOIs
StatePublished - Mar 1 2022

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy
  • History and Philosophy of Science

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