The Perelman School of Medicine and the department of Medical Ethics and Health Policy at the University of Pennsylvania announce the creation of the Penn Neurodegenerative Disease Ethics and Policy Program. The new program will support research, education and training to identify and address the ethical and policy implications of advances in the diagnosis and treatment of neurodegenerative diseases, and work toward forming best practices for how these advances can be successfully translated into clinical practice.
“This first-of-its kind program positions Penn to be the national leader in an emerging area of neuroethics,” says Ezekiel Emanuel, MD, PhD, chair of the department of Medical Ethics and Health Policy. “It comes at a critical time in research and care. The millions of patients disabled by devastating neurodegenerative diseases such as Alzheimer’s disease and Parkinson’s disease, as well as their families, clinicians and policymakers, face notable ethical and policy challenges related to losses of function and decision-making capacity. In addition, progress in biomarkers that promise early, even pre-clinical, diagnosis and treatment is creating new ethical challenges.”
With support from the Provost’s Office, the MetLife Foundation, the Michael J. Fox Foundation and the Robert Wood Johnson Foundation, the program will examine the ethical, legal and social impact of neurodegenerative diseases; develop best practices and guidelines for biomarker testing in clinical trials and clinical care; and examine the value of biomarker-based diagnostics and therapeutics. The program will also create “Making sense of Alzheimer’s Disease,” a web-based resource to educate patients, families and clinicians about these issues.
Jason Karlawish, MD, professor of Medicine, Medical Ethics and Health Policy, will serve as the program’s inaugural director. Karlawish is the Associate Director of the Penn Memory Center and an international leader in the neuroethics of aging. His research has developed novel instruments to assess decisional capacity, examined the ethics and value Alzheimer’s disease clinical trial designs and diagnostics, and addressed voting rights for older adults with cognitive impairment.