Data Privacy and Ethical Uses of Volunteered Geographic Information

There is great potential for volunteered geographic information (VGI) to augment data used for public health disease surveillance, in areas such as mass gatherings and qualitative GIS. The goal of this chapter is to explore these important issues of patient privacy, ethics, and liability, as they pertain to the use of VGI to augment health information exchanges (HIEs) in providing data for public health research programs. The current attention on health reform and HIEs provide professional geographers with an excellent opportunity to explore the contributions of VGI to this field. The chapter begins by briefly describing the legislation of patient privacy and protection in the United States, such as the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the American Recovery and Reinvestment Act of 2009. It also discuss the appropriate and inappropriate disclosures of protected health information (PHI). Next, it examines the ethical and legal issues surrounding the use of VGI in disease surveillance. Finally, the chapter will demonstrate that VGI yields tremendous value in providing sensitive and timely surveillance data when reliable and consistent communications between health care providers and regional health authorities are not possible.