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1.
Front Big Data ; 4: 624424, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34056584

RESUMEN

Researchers and researched populations are actively involved in participatory epidemiology. Such studies collect many details about an individual. Recent developments in statistical inferences can lead to sensitive information leaks from seemingly insensitive data about individuals. Typical safeguarding mechanisms are vetted by ethics committees; however, the attack models are constantly evolving. Newly discovered threats, change in applicable laws or an individual's perception can raise concerns that affect the study. Addressing these concerns is imperative to maintain trust with the researched population. We are implementing Lohpi: an infrastructure for building accountability in data processing for participatory epidemiology. We address the challenge of data-ownership by allowing institutions to host data on their managed servers while being part of Lohpi. We update data access policies using gossips. We present Lohpi as a novel architecture for research data processing and evaluate the dissemination, overhead, and fault-tolerance.

2.
JMIR Hum Factors ; 7(4): e19085, 2020 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-33055060

RESUMEN

BACKGROUND: Complying with individual privacy perceptions is essential when processing personal information for research. Our specific research area is performance development of elite athletes, wherein nutritional aspects are important. Before adopting new automated tools that capture such data, it is crucial to understand and address the privacy concerns of the research subjects that are to be studied. Privacy as contextual integrity emphasizes understanding contextual sensitivity in an information flow. In this study, we explore privacy perceptions in image-based dietary assessments. This research field lacks empirical evidence on what will be considered as privacy violations when exploring trends in long-running studies. Prior studies have only classified images as either private or public depending on their basic content. An assessment and analysis are thus needed to prevent unwanted consequences of privacy breach and other issues perceived as sensitive when designing systems for dietary assessment by using food images. OBJECTIVE: The aim of this study was to investigate common perceptions of computer systems using food images for dietary assessment. The study delves into perceived risks and data-sharing behaviors. METHODS: We investigated the privacy perceptions of 105 individuals by using a web-based survey. We analyzed these perceptions along with perceived risks in sharing dietary information with third parties. RESULTS: We found that understanding the motive behind the use of data increases its chances of sharing with a social group. CONCLUSIONS: In this study, we highlight various privacy concerns that can be addressed during the design phase. A system design that is compliant with general data protection regulations will increase participants' and stakeholders' trust in an image-based dietary assessment system. Innovative solutions are needed to reduce the intrusiveness of a continuous assessment. Individuals show varying behaviors for sharing metadata, as knowing what the data is being used for, increases the chance of it being shared.

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