title: Confidentiality considerations for use of social-spatial data on the social determinants of health: Sexual and reproductive health case study.
abstract: Understanding whether and how the places where people live, work, and play are associated with health behaviors and health is essential to understanding the social determinants of health. However, social-spatial data which link a person and their attributes to a geographic location (e.g., home address) create potential confidentiality risks. Despite the growing body of literature describing approaches to protect individual confidentiality when utilizing social-spatial data, peer-reviewed manuscripts displaying identifiable individual point data or quasi-identifiers (attributes associated with the individual or disease that narrow identification) in maps persist, suggesting that knowledge has not been effectively translated into public health research practices. Using sexual and reproductive health as a case study, we explore the extent to which maps appearing in recent peer-reviewed publications risk participant confidentiality. Our scoping review of sexual and reproductive health literature published and indexed in PubMed between January 1, 2013 and September 1, 2015 identified 45 manuscripts displaying participant data in maps as points or small-population geographic units, spanning 26 journals and representing studies conducted in 20 countries. Notably, 56% (13/23) of publications presenting point data on maps either did not describe approaches used to mask data or masked data inadequately. Furthermore, 18% (4/22) of publications displaying data using small-population geographic units included at least two quasi-identifiers. These findings highlight the need for heightened education for researchers, reviewers, and editorial teams. We aim to provide readers with a primer on key confidentiality considerations when utilizing linked social-spatial data for visualizing results. Given the widespread availability of place-based data and the ease of creating maps, it is critically important to raise awareness on when social-spatial data constitute protected health information, best practices for masking geographic identifiers, and methods of balancing disclosure risk and scientific utility. We conclude with recommendations to support the preservation of confidentiality when disseminating results.
authors.affiliation: Department of Behavioral Sciences and Health Education, Rollins School of Public Health at Emory University, 1518 Clifton Road NE, Atlanta, GA 30322, USA. Electronic address: dfhaley@emory.edu.
authors.forename: Danielle F
authors.initials: DF
authors.lastname: Haley
authors.affiliation: Department of Sociology and Criminology, The Pennsylvania State University, 211 Oswald Tower, University Park, PA 16802, USA; Department of Anthropology, The Pennsylvania State University, 409 Carpenter Building, University Park, PA 16802, USA; Graduate Program in Demography, The Pennsylvania State University, 601 Oswald Tower, University Park, PA 16802, USA.
authors.forename: Stephen A
authors.initials: SA
authors.lastname: Matthews
authors.affiliation: Department of Behavioral Sciences and Health Education, Rollins School of Public Health at Emory University, 1518 Clifton Road NE, Atlanta, GA 30322, USA.
authors.forename: Hannah L F
authors.initials: HLF
authors.lastname: Cooper
authors.affiliation: Department of Behavioral Sciences and Health Education, Rollins School of Public Health at Emory University, 1518 Clifton Road NE, Atlanta, GA 30322, USA.
authors.forename: Regine
authors.initials: R
authors.lastname: Haardörfer
authors.affiliation: Department of Epidemiology, UNC Gillings School of Global Public Health and Division of Infectious Diseases, School of Medicine, University of North Carolina at Chapel Hill, 130 Mason Farm Road, Chapel Hill, NC 27599, USA.
authors.forename: Adaora A
authors.initials: AA
authors.lastname: Adimora
authors.affiliation: Department of Sociomedical Sciences, Lerner Center for Public Health Promotion, Mailman School of Public Health at Columbia University, 722 West 168th Street, New York, NY 10032, USA.
authors.forename: Gina M
authors.initials: GM
authors.lastname: Wingood
authors.affiliation: Department of Epidemiology, Rollins School of Public Health at Emory University, 1518 Clifton Road NE, Atlanta, GA 30322, USA.
authors.forename: Michael R
authors.initials: MR
authors.lastname: Kramer
mesh_terms: D003219:Confidentiality / Q000941:ethics*; D000068240:Data Anonymization / Q000941:ethics*; D062305:Geographic Mapping; D006801:Humans; D043762:Reproductive Behavior / Q000941:ethics; D012725:Sexual Behavior / Q000941:ethics; D012923:Social Class; D064890:Social Determinants of Health / Q000941:ethics / Q000706:statistics & numerical data*
keywords: Confidentiality; Maps; Quasi-identifiers; Sexual health; Social-spatial data