Ethics of research using electronic medical record data, geographical information systems (GIS) and visualization technology methods

Issue:  Geography is both physical and human, and is often used in health research inquiries, such as access to care, distribution of resources, and environmental risks to health. Evolving technologies such as geographic information systems (GIS) and digital visualization enable scientists to understand the role of geography in a variety of health conditions and have many benefits. The science has become complex in visualization of minute details at street level; data collection, display, use, and spatial statistical ability are evermore ethically vast. Major issues exist regarding privacy of patient data, electronic medical records (EMR) links to residential identification and geo-locational risk.

Safeguarding geographical ethics

Methods have been implemented for GIS ethical safeguards, such as geo-masking , geo-censoring, re-identification, using proxy addresses, de-identifying with statistical algorithms and encryption, however,  ethical considerations for patient data still need safeguards.

Digital visualization technology has not fully addressed the ethical protection of individuals and communities in health research. Communities and individuals can be placed at security risk, there is bias in interpretation of results of images, visualization of images without a voice from the communities being viewed may be inequitable, and developing countries may not have data access but are being  visually researched.

Globally, social justice controversies exist with varying governmental regulations surrounding geographical data and patient electronic data. Participatory mapping concerns prevail for vulnerable populations and data use, display and distribution. Both technologies open patients’ locational data to geo-proxy attacks and some geo-software places cookies on your computer.

Recommendations

EMR safeguards in hospital, community, on-line systems need to increase institutional review board (IRB) awareness of ethical considerations of geographical methods of research. Agency ethics protocols should be enhanced for GIS and visualization use in research.  Statistical modeling techniques must be further explored to eliminate a compromise of research integrity, information sharing and protection of human subjects. Photo-coding procedures and  coding tools, with multiple auditors may minimize bias. Global research including vulnerable populations needs considerable discussion and guidelines, emphasizing the voice of the vulnerable. Cross-disciplinary discussions on ethical safeguards must occur and assist in policy formulation. Future ethical considerations of audio digitalization may occur.