Musings on privacy issues in health research involving disaggregate geographic data about individuals

Abstract

This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.

Replication of scientific research: addressing geoprivacy, confidentiality, and data sharing challenges in geospatial research

“…This is especially true in research on public health or social issues (see Boulos, Curtis, and AbdelMalik 2009 for an overview of locational privacy in biomedical and public health research literature). For example, there is considerable interest in the effect of neighbourhood on crime, delinquency, and immigrant assimilation (Simcha-Fagan and Schwartz 1986;Brooksgunn et al 1993;Sampson, Morenoff, and Earls 1999;Sampson, Morenoff, and Gannon-Rowley 2002;Jackson, Pebley, and Goldman 2010;Sastry and Pebley 2010;Mennis et al 2011;Mennis and Mason 2012).…”

“…Ironically, geocoding has had some unintentional built-in protections due to errors (completeness and positional error) (Zandbergen 2009). However, as the accuracy of geocoding techniques improve, the chance of successfully re-engineering mapped locations has also improved (Boulos, Curtis, and AbdelMalik 2009). As a result, these researchers are calling for standards and guidelines for the display of maps derived from georeferenced data that require privacy protections (Curtis, Mills, and Leitner 2006b;Boulos, Curtis, and AbdelMalik 2009).…”

A scoping review of spatial cluster analysis techniques for point-event data

“…To answer this call, work on data collection techniques and spatial cluster analysis methods that incorporate a notion of an individual's activity space and mobility (Orellana and Wachowicz, 2011;Zenk et al, 2011), or residential history (Meliker and Sloan, 2011), should be encouraged throughout the disciplines involved with spatial cluster analysis. Building such an awareness throughout this research community will also bring more macroscopic issues to the front, such as privacy issues in health research caused by the distribution of sensitive, location-specific health data (Boulos et al, 2009;Meliker et al, 2009).…”

An eight-year snapshot of geospatial cancer research (2002–2009): clinico-epidemiological and methodological findings and trends

“…Confidentiality constraints often preclude the release of disaggregate data about individual cancer patients [102,103]. Access to individually geocoded (disaggregate) data often involves lengthy and cumbersome procedures through review boards and committees for approval (and sometimes is not possible).…”

“…Exposure assessment data are generally collected for different areas than health and demographic data [102]. Kamel Boulos et al [103] provide a comprehensive state-of-the-art review of data privacy issues (including privacy-preserving solutions and recommendations) in health GIS studies.…”