Athens, Ga. – 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.
“UGA got in at the ground floor,” Leonard said. She explained that the recommendations advised in the paper are a nexus of gerontology research and public policy implementation, and balance often-competing state interests and patient privacy concerns.
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.
Disease registries are not a new concept in Georgia, but the Alzheimer’s registry is unique in that it does not track an infectious disease. Tracking contagious diseases tends to galvanize data collection and sees fewer challenges, but according to Leonard, registries involving medical data collection have a longstanding and deep connection to public policy law. She said legal precedents support the registry, even considering the Georgia Constitution’s strict interpretation of personal privacy.
“More important than a constitutional challenge is implementation going forward,” Leonard said.
Her recommendations advised that Georgia’s Alzheimer’s registry, which contains confidentiality compliances, be consistent with established medical regulations and legal standards that protect patient privacy but also provide secure, de-identified data aggregated for Alzheimer’s research purposes, public policy planning and patient services improvement.
The nature and public acceptance of registries evolve over time, according to Miles.
“Coming out and talking about it-getting past the shame and pain-we can beat this thing,” she said.
Leonard hopes that the recommendations outlined in the paper keep pressure on state representatives to foster registry implementation and avoid administrative and budget gridlock.
Co-authors of the paper were Rui Bu and Amanda Brown, both of the UGA School of Law.
“Best Practices for a State Alzheimer’s Disease Registry: Lessons From Georgia,” is available at http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2592461.
For more information on the UGA School of Law, visit www.law.uga.edu. For more information on the College of Public Health, visit www.publichealth.uga.edu. More information on the registry is available at https://dph.georgia.gov/alzheimers-registry.
