University of Georgia faculty recently published recommendations on the ethical and legal application of a population-based, statewide Alzheimer’s registry. They argue that with a more developed data-collection tool, Georgia’s public policy creators will be better informed to serve the impacted population and battle the disease.
Established by Georgia General Assembly House Bill 966 and signed into law in 2014, the registry is a means to collect and record Alzheimer’s diagnosis statistics in response to a fast-growing number of cases in Georgia. The disease, which destroys brain cells and causes dementia, affects nearly 130,000 Georgians, a disproportionate number of whom are ethnic minorities, according to the report.
The registry aims to lessen the increasing economic and health care burden caused by Alzheimer’s by collecting widespread data for the purpose of medical research and economic and health care policy planning.
UGA School of Law professor Elizabeth Weeks Leonard, with support from Dr. Toni Miles, an epidemiology professor in the College of Public Health, authored the report that is available online and will be published in print by the Minnesota Journal of Law, Science & Technology next year. The report laid out several recommendations for the registry’s continued rollout, and noted potentially problematic concerns such as constitutionality challenges, patient privacy complications and the scope and dissemination of collected data. Regulation methods, ways to incentivize registry reporting and public awareness campaigns were also recommended.
The law does not legally bind patients or health care providers to disclose diagnosis data, but for the registry to be an effective, low-cost tool to map the disease, accurate and detailed reporting on a case-by-case basis is imperative, according to the report. The recommendations Leonard presented provide a legal and ethical means to cast a wide net for reliable and valid data collection.
According to Miles, the registry serves Georgia’s elderly population by collecting data that allows public safety officials and health care providers to assess the broad impact of the disease and subsequently allocate resources.