Ethical aspects in eHealth – design of a privacy-friendly system

Journal of Information, Communication and Ethics in Society 14 (1):49-69 (2016)
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Abstract

Purpose– The medical advances and historical fluctuations in the demographics are contributing to the rise of the average age. These changes are increasing the pressure to organize adequate care to a growing number of individuals. As a way to provide efficient and cost-effective care, eHealth systems are gaining importance. However, this trend is creating new ethical concerns. Major issues are privacy and patients’ control over their data. To deploy these systems on a large scale, they need to offer strict privacy protection. Even though many research proposals focus on eHealth systems and related ethical requirements, there is an evident lack of practical solutions for protecting users’ personal information. The purpose of this study is to explore the ethical considerations related to these systems and extract the privacy requirements. This paper also aims to put forth a system design which ensures appropriate privacy protection.Design/methodology/approach– This paper investigates the existing work in the area of eHealth systems and the related ethical considerations, which establish privacy as one of the main requirements. It lists the ethical requirements and data protection standards that a system needs to fulfil and uses them as a guideline for creating the proposed design.Findings– Even though privacy is considered to be a paramount aspect of the eHealth systems, the existing proposals do not tackle this issue from the outset of the design. Consequently, introducing privacy at the final stages of the system deployment imposes significant limitations and the provided data protection is not always to the standards expected by the users.Originality/value– This paper motivates the need for addressing ethical concerns in the eHealth domain with special focus on establishing strict privacy protection. It lists the privacy requirements and offers practical solutions for developing a privacy-friendly system and takes the approach of privacy-by-design. Additionally, the proposed design is evaluated against ethical principles as proposed in the existing literature. The aim is to show that technological advances can be used to improve quality and efficiency of care, while the usually raised concerns can be avoided.

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