BRAIN Initiative Grant to Examine Ethical Issues of Deep Brain Stimulation in Parkinson’s

BRAIN Initiative Grant to Examine Ethical Issues of Deep Brain Stimulation in Parkinson’s

Two Cleveland Clinic researchers are recipients of the first grants awarded by the National Institute of Health’s BRAIN Initiative in neuroethics, for studies looking ethical issues in brain surgeries intended to treat diseases, with specific attention on Parkinson’s.

“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,” Paul Ford, interim chair of the Department of Bioethics at the Cleveland Clinic, said in a news release.

The Brain Research through Advancing Innovative Neurotechnologies (BRAIN) program, initiated in 2013, aims to deepen the understanding of the human brain and its disorders like Alzheimer’s, Parkinson’s, and epilepsy.

“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,” Ford said.

The awardees are Lauren Sankary, JD, a neuroethics fellow at the Cleveland Clinic, and Cynthia Kubu, PhD, a neuropsychologist with the Center for Neurological Restoration at the clinic.

Sankary received the three-year Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship grant. The grant’s value was not announced, but it will be used to study the experiences of patients who have taken part in studies of one of two brain implant treatmentsdeep brain stimulation (DBS) and closed-loop responsive neurostimulation (RNS).

Besides including data from completed DBS clinical trials, scientists will also take into account data from Cleveland Clinic’s new DBS study (NCT02835443) for stroke recovery, which is currently enrolling patients.

Kubu was awarded $1.6 million from the National Institute of Mental Health under the initiative to study the perspectives of Parkinson’s patients and family members on possible changes in personality over the course of DBS.

Deep brain stimulation is used to treat medication-resistant symptoms of Parkinson’s disease, or patients whose symptoms are responding to pharmaceutical treatments but are having increasing difficulties with them, like off periods.

Although little is known about the effects of DBS on personality, studies report that Parkinson’s patients showed increased impulsivity after DBS treatments.

“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.”

With this study, researchers intend to understand if existing measures capture changes in valued personality characteristics. Among the questions they want to see answered: Does Parkinson’s cause changes in perceived personality? Does DBS change personal characteristics thought meaningful to an individual patient and family members?


  1. Jennifer says:

    Well I can certainly tell this study that my husband’s personality changed. We were very happily married but he did the most dreadful things adyer DBS. His specialist took no notice of my deep concerns and in fact used the ‘privacy act’ to refuse to inform or help me. Only my memory of our wonderful pre DBS relationship helped me endure the torment of the following 18 months. We were not given any warning that such changes could happen – to me that was the unethical part of it. Eventually after those 20 months of living with – and trying to care for – a stranger, my husband became ‘himself’ again. But I’m afraid the damage to our marriage has had a deep impact on me.

    • Jenny Littke says:

      Jennifer, I too am going through this with my husband who had the surgery approximately 2 years ago. He is definitely different and not in a good way. Can you tell me what some of your husband’s behavior patterns are? One of the things I’m finding in my husband is the purchase of big ticket items, which is so very different than the way he was. Would love to “talk” with you more.

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