New Article On “Best Practices for a State Alzheimer’s Disease Registry”

University of Georgia Law Professor Elizabeth Weeks Leonard has a forthcoming article in the Minnesota Journal of Law, Science and Technology.  Professor Leonard, working with graduate research assistants and colleagues from the University of Georgia’s Institute of Gerontology, draws upon Georgia’s recent experiences in implementing a state public health registry for Alzheimer’s disease or similar dementias under legislation passed in 2014.  The article provides guidance on how to navigate the legal and ethical issues that can arise in implementing such a registry.   

This is a cutting edge program in its early stages, as described by the authors:

“This article offers a unique window into one state’s experience establishing an Alzheimer’s disease and related dementia registry. Georgia is the most recent of handful of states to adopt such a registry and, in doing so, has already committed to robust data collection practices along with clear commitment to protecting patients’ privacy. The authors were privileged to convene a group of stakeholders to brainstorm and submit rulemaking comments on Registry implementation to the Georgia Department of Public Health.

In addition, through further consultation with state leaders in gerontology and building on our own health law, public health, and legal services expertise, we offer additional recommended best practices for the Registry. We anticipate that Georgia is leading a nationwide trend in addressing the rapidly rising incidence of Alzheimer’s disease and related dementia with the aging population. Accordingly, our recommendations will be valuable not only for Georgia but also for other states that may decide to establish similar Alzheimer’s registries.”

You can get an early look at “Best Practices for a State Alzheimer’s Disease Registry: Lessons from Georgia,” here on SSRN. Professor Leonard’s research focuses on health care finance and regulation.