Disposition toward privacy and information disclosure in the context of emerging health technologies

Abstract

Objective We sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies. Materials and Methods We spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.ti for privacy considerations expressed by respondents. Results Three key findings from the qualitative data suggest a model of privacy disposition. First, participants described privacy related behavior as both contextual and habitual. Second, there are motivations for and deterrents to sharing personal information that do not fit into the analytical categories of risks and benefits. Third, philosophies of privacy, often described as attitudes toward privacy, should be classified as a subtype of motivation or deterrent. Discussion This qualitative analysis suggests a simple but potentially powerful conceptual model of privacy disposition, or what makes a person more or less private. Components of privacy disposition are identifiable and measurable through self-report and therefore amenable to operationalization and further quantitative inquiry. Conclusions We propose this model as the basis for a psychometric instrument that can be used to identify types of privacy dispositions, with potential applications in research, clinical practice, system design, and policy.

Associations Between Privacy-Related Constructs and Depression and Suicide Risk in Health Care Professionals, Trainees, and Students

“…20 Fear of stigma, for instance, is one deterrent or privacy-related concern, 20 and information reporting strategies, such as nonresponse to personally identifiable questions, is a type of privacy-related behavior resulting from perceived lack of privacy. [20][21][22] Despite the prevalence of distress, treatment barriers, and privacy-related concerns and behaviors around accessing care, few studies have empirically examined the relationship between privacy-related constructs and health care professionals' , trainees' , and students' mental health. Privacy-related constructs may have unique correlates to individuals' current and long-standing health status and health-related needs.…”

Special Section on Ethics in Health Informatics

“…Articles in the data sharing area explored a broad range of issues including passive data collection [6]; [patient] participatory methods in data-intensive biomedical research [7] and disease surveillance [8]; data management, use/re-use, and sharing internationally [9] and under the GDPR [10]; posthumous data donation [11]; and human protection with regard to data sharing [12]. Papers focused on privacy looked at the use and understanding of anonymization and de-identification practices in the literature [13]; health information disclosure [14]; balancing privacy and data use under the GDPR [15]; activities that work against citizen and patient trust with regard to personal information [16]; and terms of use violations by researchers accessing online patient information [17]. The paper addressing both data sharing and privacy, which was selected as a best paper of 2019, proposed guidelines for protection of user privacy and rights in academic data sharing partnerships through the analysis of a crisis text line pilot program [18].…”

A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada

“…The results of this study should be interpreted in light of several limitations. The panel size was within the 10–50 range recommended in the policy Delphi literature [ 17 , 18 , 25 , 26 ], yet response rates were lower than those reported in similar studies (~ 25%). Consensus among this panel may not therefore suggest how well the KIDS Framework may transfer across other pediatric genomic centers in Canada.…”