Emerging ethical considerations for the use of geospatial data in research on the social determinants of health
To date, standard Good Clinical Practice and Human Subjects Protection certifications do not include a module on use of social-spatial data nor are there universally accepted guidelines for using linked social-spatial data for social and behavioral research. Recent software advances and the availability of primary and secondary datasets that link spatial information (e.g., participant home address or census tract) to participant study data have created new opportunities to explore these relationships and to disseminate results using maps. Public health professionals may be unaware of what types and units of geospatial data constitute protected health information, the risks associated with using linked social-spatial data (e.g., reverse identification) and approaches to mitigate these risks (e.g., geomasking, data sharing strategies) while ensuring the integrity of research findings.
Using HIV/AIDS as a case study, we will explore ethical considerations for using linked social-spatial data for research on the social determinants of health, with a focus on: 1) what types and units of geospatial data are considered protected health information; 2) how confidentiality considerations may vary depending on the user (e.g., primary data collection vs. secondary analysis) and the research stage (e.g., analysis vs. dissemination), and; 3) balancing the need to protect participant confidentiality while preserving scientific integrity.
Learning Areas:Ethics, professional and legal requirements
Public health or related research
Social and behavioral sciences
Identify what types and units of geospatial data are considered protected health information (PHI) Discuss ethical implications for the use and sharing of datasets containing linked geospatial data, including the need to protect participant confidentiality while preserving scientific integrity of research on the social determinants of health Discuss ethical implications for the dissemination of results using linked geospatial data, including the need to protect participant confidentiality while preserving scientific integrity of research on the social determinants of health
Keyword(s): Ethics, Geographic Information Systems (GIS)
Qualified on the content I am responsible for because: I am the principal investigator of a federally-funded grant exploring associations among neighborhood factors and sexual health in women living in the Southern US which includes a focus on ethical implications for use of linked geospatial data. I am also a Certified Clinical Research Professional (CCRP) and a doctoral candidate in the Department of Behavioral Sciences and Health Education at Rollins School of Public Health, Emory University.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.