TY - JOUR
T1 - Dignity of Risk, Reemergent Agency, and the Central Thalamic Stimulation Trial for Moderate to Severe Brain Injury
AU - Fins, Joseph J.
AU - Wright, Megan S.
N1 - Funding Information:
*Division of Medical Ethics and Department of Medicine,Weill Medical College of Cornell University, New York; Solomon Center for Health, Law, and Policy,Yale Law School. † Law, Medicine, and Sociology, Penn State Law; Departments of Humanities and Public Health Sciences, Penn State College of Medicine; and Division of Medical Ethics, Weill Medical College of Cornell University. Correspondence: Joseph J. Fins, Division of Medical Ethics, Weill Cornell Medical College, 435 East 70th Street, Suite 4-J, New York, NY 10021. Email: [email protected]. This work is funded by a BRAIN Initiative grant to Dr. Fins, “Cognitive Restoration: Neuroethics and Disability Rights” NIH [1RF1MH1237].
Publisher Copyright:
© 2022 by Johns Hopkins University Press.
PY - 2022/3/1
Y1 - 2022/3/1
N2 - 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.
AB - 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.
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U2 - 10.1353/pbm.2022.0026
DO - 10.1353/pbm.2022.0026
M3 - Article
C2 - 35938438
AN - SCOPUS:85135547704
SN - 0031-5982
VL - 65
SP - 307
EP - 315
JO - Perspectives in Biology and Medicine
JF - Perspectives in Biology and Medicine
IS - 2
M1 - 86178
ER -