Ethical Considerations for the Use of Consumer Wearables in Health Research

Introduction

• UN Moratorium on AI:
  • Call by UN High Commissioner for Human Rights for moratorium on AI systems that risk human rights (Sept 15, 2021).
  • Concerns include surveillance, profiling, and monitoring of people.
• Consumer Wearables:
  • Promising tools for health research.
  • Risks of surveillance and data privacy breaches (e.g., 61 million fitness tracker records breached).
• Research Considerations:
  • Ethical impacts on users in research contexts.
  • Need for examining participant, researcher, and third-party relationships.

Background and Objective

• Objective:
  • Explore the enmeshment of corporate and research interests.
  • Implications for participant data privacy and security.
• Methods:
  • Analysis of UN report on privacy.
  • Suggestions for ethical research with wearables.

Third-party Involvement in Research Practices

• Traditional vs. Consumer Wearables:
  • Traditional wearables: data restricted to researcher-participant relationship.
  • Consumer wearables: continuous data transfer to third-party companies.
• Data Practices:
  • Data collection often without user knowledge, can be used for commercial purposes.
  • Lack of transparency in data usage by companies.

Data Collection, Usage, and Privacy

• Researcher Practices:
  • Strict guidelines for data collection and analysis.
  • Participant informed through a Letter of Information.
• Company Practices:
  • Aim to collect as much data as possible.
  • Privacy policies often inaccessible.
  • Data can be used for demographics analysis and AI training.

Commercial vs. Research Goals

• Goal Conflicts:
  • Researchers focus on science; companies on profit.
  • Choice architecture in wearables can influence user decisions without their awareness.
• Issues:
  • User autonomy compromised by invisible influences.
  • Potential for corporate interests to affect research outcomes.

Data Security Concerns

• Researcher Guidelines:
  • Clear guidelines for data storage and destruction.
  • Data security breaches a known risk.
• Company Data Practices:
  • Transfer of data between servers subject to varying safety standards.
  • Data disposal practices often unclear.

Suggestions for Researchers

• Transparency:
  • Demand radical transparency from third-party providers.
  • Develop standardized reporting guidelines in collaboration with wearable developers.
• Informed Consent:
  • Weigh benefits and risks, disclose privacy risks in participant information.
  • Consider anonymous accounts or seamful design to remind users of tech influence.
• Limitations:
  • Researchers lack financial and legislative power to enforce changes.

Conclusion

• Wearables offer potential for health research but come with ethical concerns.
• Need for clarity in data handling by third-party companies.
• Encourage collaboration between researchers and tech companies to improve transparency.

References

• Various references to studies, reports, and expert opinions on data privacy, AI, and wearable technologies.