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Physiological Data: Challenges for Privacy and Ethics

Keith Davis, Tuukka Ruotsalo

TL;DR

This paper tackles the privacy and ethics challenges of ubiquitous physiological data from wearables, framing the problem around how physiological signals can be paired with non-physiological data to reveal private states. It develops a framework distinguishing primary, secondary, and auxiliary data uses, analyzes risks and rewards for users and stewards, and discusses policy and design remedies. The authors highlight the potential for profound inferences about emotions, health, and preferences, coupled with risks of surveillance, identity exposure, and coercive data exploitation. They propose education, privacy-preserving designs, and governance mechanisms, including legislative measures and blockchain-inspired data controls, to balance benefits with protection against misuse. The work aims to guide policymakers, developers, and researchers toward ethical, secure deployment of physiological computing while preserving its transformative potential.

Abstract

Wearable devices that measure and record physiological signals are now becoming widely available to the general public with ever-increasing affordability and signal quality. The data from these devices introduce serious ethical challenges that remain largely unaddressed. Users do not always understand how these data can be leveraged to reveal private information about them and developers of these devices may not fully grasp how physiological data collected today could be used in the future for completely different purposes. We discuss the potential for wearable devices, initially designed to help users improve their well-being or enhance the experience of some digital application, to be appropriated in ways that extend far beyond their original intended purpose. We identify how the currently available technology can be misused, discuss how pairing physiological data with non-physiological data can radically expand the predictive capacity of physiological wearables, and explore the implications of these expanded capacities for a variety of stakeholders.

Physiological Data: Challenges for Privacy and Ethics

TL;DR

This paper tackles the privacy and ethics challenges of ubiquitous physiological data from wearables, framing the problem around how physiological signals can be paired with non-physiological data to reveal private states. It develops a framework distinguishing primary, secondary, and auxiliary data uses, analyzes risks and rewards for users and stewards, and discusses policy and design remedies. The authors highlight the potential for profound inferences about emotions, health, and preferences, coupled with risks of surveillance, identity exposure, and coercive data exploitation. They propose education, privacy-preserving designs, and governance mechanisms, including legislative measures and blockchain-inspired data controls, to balance benefits with protection against misuse. The work aims to guide policymakers, developers, and researchers toward ethical, secure deployment of physiological computing while preserving its transformative potential.

Abstract

Wearable devices that measure and record physiological signals are now becoming widely available to the general public with ever-increasing affordability and signal quality. The data from these devices introduce serious ethical challenges that remain largely unaddressed. Users do not always understand how these data can be leveraged to reveal private information about them and developers of these devices may not fully grasp how physiological data collected today could be used in the future for completely different purposes. We discuss the potential for wearable devices, initially designed to help users improve their well-being or enhance the experience of some digital application, to be appropriated in ways that extend far beyond their original intended purpose. We identify how the currently available technology can be misused, discuss how pairing physiological data with non-physiological data can radically expand the predictive capacity of physiological wearables, and explore the implications of these expanded capacities for a variety of stakeholders.
Paper Structure (9 sections, 2 figures)

This paper contains 9 sections, 2 figures.

Table of Contents

  1. Promises and Perils
  2. Devices and Signals
  3. Primary Use
  4. Secondary Use
  5. Auxiliary Use
  6. Risks and Rewards
  7. User Perspectives
  8. Steward Perspectives
  9. Discussion and Conclusions

Figures (2)

  • Figure 1: A person who intends to use physiological devices may be unaware that the signals collected from these devices can be paired with data collected from their smartphone. In the scenario depicted above, a user browsing social media while wearing a smartwatch discovers the watch is sharing his physiological data with the social media service he is using. His heart rate can then be used to determine which content he finds most interesting or appealing. While some users may appreciate such a service, others are likely to find it invasive.
  • Figure 2: Physiological signals come in many forms, and their utility can expand dramatically depending on how they are analyzed and what other data they are combined with.