The NIH BRAIN Initiative has awarded two Cleveland Clinic researchers grants to study ethical issues involving brain surgery, as part of the first neuroethics grants awarded by the initiative.
Cynthia Kubu, Ph.D., a neuropsychologist in Cleveland Clinic’s Center for Neurological Restoration, was awarded $1.6 million over four years to study patients’ and family members’ perspectives regarding personality in the context of Parkinson’s disease and deep brain stimulation (DBS) for the condition.
The study, funded by the National Institute of Mental Health as part of the National Institute of Health’s BRAIN Initiative, will focus on patients’ and family members’ perspectives regarding the personality characteristics they value most and changes in those personality characteristics at different stages of Parkinson’s and over the course of DBS.
“We hypothesize that patients will report changes to personality associated with Parkinson’s Disease,” Kubu said, “Conversely, we think that deep brain simulation will result in a return to pre-illness personality and will allow patients to be their more authentic self.”
The data from the study will identify if existing measures capture valued personality characteristics, illustrate if Parkinson’s disease results in changes in perceived personality, demonstrate the concordance between patients’ and families’ ratings of perceived personality change, and confirm if DBS results in changes in individually meaningful personality characteristics. Researchers believe these data have implications for the development of personality measures that mirror patients’ values, the informed consent process, and may inform public and philosophical discussions of identity and autonomy in the context of deep brain stimulation.
In addition, Lauren Sankary, J.D., a neuroethics fellow at Cleveland Clinic, was awarded a three-year grant through the BRAIN Initiative Fellows program to study ethical issues arising as research participants exit investigational studies of implanted brain devices.
Sankary’s neuroethics research will take place under an NIH Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship grant. Her research focuses on the experiences of research participants at the end of their participation in clinical trials of two implanted brain devices: deep brain stimulation (DBS) and closed-loop responsive neurostimulation (RNS). This research will draw from data from completed DBS clinical trials and will include ongoing involvement in the Cleveland Clinic’s novel clinical trial of DBS for stroke recovery.
“As medicine moves forward with technologies that allow us to treat patients in new ways in the field neuroscience, we must have a firm understanding of the ethics surrounding these advances,” said Paul Ford, Ph.D., interim chair of the Department of Bioethics at the Cleveland Clinic. “We are thankful the BRAIN Initiative sees the importance of exploring ethical considerations in neuroscience and hope our contributions can help move the field forward.”
The BRAIN Initiative – Brain Research through Advancing Innovative Neurotechnologies – was launched in 2013 as an effort to revolutionize understanding of the human brain including disorders like Alzheimer’s, autism, epilepsy, schizophrenia, Parkinson’s disease and traumatic brain injury.
The research is being supported by grants R01MH114853 and F32MH115419.