Tracing the Invisible: Information Fiduciaries and the Pandemic
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ARTICLE SUMMARY
Technologies such as tracing apps were not as effective in addressing the COVID-19 pandemic as developers hoped. Better privacy protection would help users trust public health-related technologies.
POLICY RELEVANCE
Policymakers could create a public entity to serve as a health care data fiduciary.
KEY TAKEAWAYS
- Technologies such as smartphone apps or Bluetooth proximity data can help address public health problems such as the COVID-19 pandemic, but also raise privacy concerns; many individuals will hesitate to use these technological tools.
- Two problems limit the effectiveness of many technological tools in public health.
- Pandemic technology thwarts participation by some populations.
- Developers’ financial incentives create a conflict of interest with public health goals.
- Pandemic technology thwarts participation by some populations.
- Policymakers should recognize that developers of pandemic technologies have financial incentives to misuse users' data.
- The reuse of data for purposes other than that for which it was originally shared raises legal and ethical concerns.
- Private healthcare organizations are for-profit entities, and may be tempted to use data to screen out some patients.
- Data might be used for advertising.
- The reuse of data for purposes other than that for which it was originally shared raises legal and ethical concerns.
- Individuals face privacy challenges in using health-related technologies.
- Proprietary algorithms make it hard to challenge the legality of some uses of data.
- Under the "third-party doctrine," information shared with third parties such as a technology provider may be accessed by law enforcement without a warrant.
- Proprietary algorithms make it hard to challenge the legality of some uses of data.
- The concept of an information fiduciary could provide a better legal framework for development of pandemic technologies; a fiduciary has a legal responsibility to protect users’ confidentiality and interests.
- In a pandemic, public health officials need detailed information about patients, not aggregate data, and data aggregation cannot be used to protect consumers in this context.
- Policymakers should consider two solutions that would ensure the effectiveness of public health data-based technologies.
- Organizations should publicly reveal conflicts of interest.
- A public health fiduciary should be created to protect epidemiological data.
- Organizations should publicly reveal conflicts of interest.
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About Anne L. Washington
Anne L. Washington is an Assistant Professor of Data Policy at New York University Steinhardt School. The current focus of her research is open government data. She applies her expertise in digital government to emerging data governance issues in organizations with a public mission. Furthermore, Professor Washington delves into the manufacturing, meaning, and retrieval of digital information. At the broadest level, her multi-disciplinary work considers the impact of technology on society through the lens of digital record keeping.
