As the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continues its examination of the ethical issues associated with neuroscience research and the application of neuroscience research findings, it heard from a panel of experts about what neuroscience research might mean for various affected communities.
The diverse panel included representatives of those affected by Alzheimer’s disease, Parkinson’s disease, and mental illness. Neuroscience research and translation of neuroscience findings into clinical applications could directly impact these three groups. Engaging affected communities plays a key role in the Bioethics Commission’s deliberations.
Harry Johns, President and CEO of the Alzheimer’s Association, opened the session. Alzheimer’s disease is the sixth-leading cause of death in the United States. The largest non-profit funder of Alzheimer’s research, the Alzheimer’s Association has awarded over $315 million to more than 2,200 scientists since 1982 to advance understanding of Alzheimer’s and dementia and identify new treatments, preventions and ultimately, a cure.
According to the Alzheimer’s Association, a lack of volunteers for Alzheimer’s clinical trials is one of the greatest obstacles slowing the progress of potential new treatments. The Association’s clinical studies matching service connects individuals with Alzheimer’s, their caregivers, healthy volunteers, and physicians with current studies.
Johns noted that “for many years in our area diminished capacity was perhaps the biggest consideration” regarding participation in clinical trials. And it remains a key concern.
“At the Alzheimer Association we recommend that for people to have an ethically valid approach, that they do not participate in a study decided only by surrogates if they themselves cannot benefit from the treatment that they would receive,” he said
Sohini Chowdhury, Senior Vice President for Research Partnerships at the Michael J. Fox Foundation for Parkinson’s Research spoke next. According to the Parkinson’s Disease Foundation, an estimated seven to 10 million people worldwide are living with Parkinson’s disease, yet the causes of Parkinson’s remain unknown. Medications and treatments, including deep brain stimulation, help patients manage the symptoms of Parkinson’s disease, yet no cure exists. Since 2000, the Michael J. Fox Foundation has granted more than $450 million in research and supported efforts to improve recruitment of participants for clinical trials to accelerate the development of new and improved treatments for Parkinson’s.
Chowdhury said many in the Parkinson’s patient community are willing to participate in research that involves disclosing their genetic status or sharing their medical history.
“They accept that there are risks,” she said. “There are tradeoffs for hearing status or for entering medical history into an online database. Our community has by and large chosen to recognize the potential risks and forge ahead,” she said.
Next up was Dr. Gregory Simon, Chair of the Scientific Advisory Board of the Depression and Bipolar Support Alliance (DBSA). Depression and bipolar disorder affect more than 21 million Americans, and contribute to 90 percent of the nation’s suicides every year. DBSA was created for and is led by individuals living with mood disorders, and is guided by a scientific advisory board comprised of the leading researchers and clinicians in the field of mood disorders. It provides information and educational resources for individuals, families, caregivers, and clinicians. Resources include information on wellness programs, treatments, and the latest research on mood disorders. The organization offers free support groups and online tools to help patients manage their health.
Simon said while he agreed that there are many things about the issues raised by neurological conditions that are similar to those that occur with other afflictions, it’s important to understand there are differences.
“There are a few things about mental health conditions that do stand out,” he said. “These conditions often affect people early in life, they cause long-term disability…and the expression of mental health conditions is remarkably heterogeneous.”
He added that “mental health conditions unfortunately still carry much stigma and discrimination. And also in the mental health area we see well-intentioned paternalism.”