CLEVELAND, Ohio — Federal grant opportunities in bioethics research are few and far between.
But researchers at Case Western Reserve University and the Cleveland Clinic have won two grants — together worth nearly $2 million – to study how underserved and minority communities view genomics research, and the bioethics of using deep brain stimulation to help Parkinson’s patients.
The grants are being made under the National Institutes of Health’s Challenge Grant program, thanks to $200 million in federal stimulus money awarded in February.
“I think Cleveland is a special place for bioethics,” said Aaron Goldenberg, co-principal investigator on the $1.3 million, two-year grant to Case from the National Human Genome Research Institute and an assistant professor of bioethics at the university.“Between the Cleveland Clinic and Case, and the bioethics people who work with us at MetroHealth, there is a lot of amazing bioethics work” going on in the city, Goldenberg said. “Social issues around medicine, ethical/legal issues around medicine … compared to a lot of cities, we have a real special collaboration, a special group of researchers.”
Goldenberg is working with Patricia Marshall, bioethics professor and associate professor of anthropology at Case, to understand the views and concerns of underserved and minority communities in order to identify potential barriers to translational genomics research and develop meaningful approaches for overcoming those barriers.
“When I was doing my training, I spent a lot of time looking at health disparities and why certain populations have higher rates of certain types of disease,” Goldenberg said. ”We know, for example, that African Americans have higher rates of hypertension and heart disease.”
Goldenberg, Marshall and their colleagues plan on working with the Cleveland NAACP, Cleveland Office of Minority Health, Cleveland Center for Families and Children, Kirwan Institute for the Study of Race and Ethnicity at Ohio State University, National Genetics Equity Network, and Case Center for Reducing Health Disparities to ”talk to community members about … what they think contributes to why their communities have higher rates of disease,” Goldenberg said. ”Is it genetic factors? Is it social factors?”
Goldenberg hopes the Community Voices project gets people talking. He also thinks policymakers will be listening. The researchers, plan to create four jobs — three research and one research coordinator — to help them hold a dozen focus groups in African American, Hispanic and Caucasian communities and do more than 100 personal interviews.
Meanwhile, the Cleveland Clinic grant for $500,000 over two years will be used to study how patients who potentially could benefit from deep brain-stimulating devices perceive three aspects of control, which could affect the outcomes of their implant surgeries, said Cynthia Kubu, a neuropsychologist.
For instance, patients who have Parkinson’s disease — a neurodegenerative disease that causes loss of movement control — may perceive implanted electrical devices that could help their disease in terms of symptom control, personal control and device control, Kubu said.
Knowing these perceptions could help doctors gauge patients’ expectations for quality-of-life improvements from implanted devices, and then tailor surgeries and follow-up therapies to best satisfy the patients and their families, she said.
Kubu will work with bioethicist Paul Ford, neurologist Dr. Jerry Vitek, and Dr. Andre Machado, director of the Center for Neurological Restoration, to recruit 50 Parkinson’s patients for the study, which is being funded by the National Institute of Neurological Disorders and Stroke.
This research could show the way for similar research for patients who have other neurological problems, such as epilepsy or psychiatric disorders, Kubu said.
In all, the Clinic has received six Challenge Grants from the National Institutes of Health for a total of $4.7 million, said spokeswoman Molly Johnson.
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[...] 10.14 Daily Digest Posted October 14, 2009 Filed under: Featured Hospitals/Medical Centers, Funding, Market Research | FUNDING/GRANTS Researchers at Case Western Reserve University and the Cleveland Clinic Win Nearly $2MM in Grants To Study Bioethics of Using Deep Brain Stimulation to Help Parkinson’s Patients. The grants will also be applied to study how underserved and minority communities view genomics research. Learn More [...]
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