Digital Contact Tracing for Pandemic Response: Ethics and Governance Guidance

"...we must strike a balance between privacy and values like equity, choice, economic well-being, and solidarity. Too much emphasis on privacy could severely limit the ability to gather information that is critical for effective and efficient contact tracing to help beat the pandemic, and so the full range of interests and values of the public must drive this conversation..." - Jeffrey Kahn

As part of broader disease surveillance and containment strategies in the context of the COVID-19 pandemic, efforts around the world are being undertaken to develop and leverage health-system-supportive technology solutions, such as digital contact tracing technology and closely related digital health products (together: DCTT). For instance, because asymptomatic spread of SARS-CoV-2 appears to be a significant source of infection, it is important to identify potentially infected people before they show symptoms; DCTT can help quickly identify and notify potential contacts, who can be asked to quarantine as soon as possible. While these technologies have significant promise, they also raise ethical, legal, and governance challenges. In order to support informed COVID-19 decision-making on the part of governments, technology developers, businesses, institutional leaders, and the public, Johns Hopkins University (JHU)'s Berman Institute for Bioethics and Center for Health at Johns Hopkins Security undertook a rapid research project that resulted in a series of guidelines to help manage the creation, implementation, and application of DCTT.

Some of the core aspects of DCCT explored in the report include:

• the value of and basic methods for traditional public health surveillance and contact tracing;
• candidate technological products to enhance public health surveillance and contact tracing, how they work, and their comparative value for public health;
• core ethical, legal, and governance considerations, and how they relate to relevant features of candidate technological solutions; and
• what is needed to move forward responsibly with the use of digital technology in support of public health surveillance, acknowledging gaps in our current understanding.

The edited volume brings together perspectives from bioethics, health security, public health, technology development, engineering, public policy, and law. Click here to read more about the lead chapter authors and contributors. The main chapters focus on:

1. Public Health Perspective
2. Digital Technology and Contact Tracing
3. Ethics of Designing and Using DCTT
4. Legal Considerations
5. Recommendations

The report makes numerous recommendations in the areas of:

• Public health - example: Make de-identified data collected through DCTT available to public health professionals and researchers to support population-level studies and analyses.
• Ethics - selected examples:
  • Continuously and systematically monitor DCTT's performance in each context for effectiveness and benefit, harms, and the fair distribution of both benefits and harms.
  • Conduct in-depth qualitative research to examine: public attitudes about perceptions of trust in DCTT among different communities, which features of DCTT influence trust, and the extent to which people are willing to provide different types of data through DCTT to help their community.
  • Pursue robust public- and user-engagement activities to identify and incorporate, to the extent possible, a range of values (e.g., autonomy) into the design of the technology.
  • Enlist trusted leaders to communicate effectively with the public about DCTT and encourage its use (though not requiring it), while explaining the plan to evolve design depending upon expanding knowledge and new evidence, and local conditions, and changing preferences and priorities.
  • Develop a clear and concise module consisting of basic disclosure and voluntary authorisation to accompany DCTT, and provide more detailed information, such as frequently asked questions (FAQs) in plain language, to those who wish to learn more.
  • Take steps to minimise the stigma (and potential financial losses) that could result if maps are generated based on DCTT to provide the public with the locations COVID-19-positive individuals have visited.
  • Establish digital surveillance oversight committees, with diverse and qualified membership, to provide ethical and regulatory review prior to and concurrent with widespread use of a DCTT system.
• Legislative - example: Require DCTT developers to disclose to users, in clear language, the nature of the information that would be collected, how it would be collected, how it would be stored, and for what purposes it may be used.

Primary conclusions to emerge:

• Privacy should not outweigh public health goals and other values.
• Considering that such broad public interests are at stake, big technology companies should not unilaterally control the terms, conditions, or capabilities of DCTT; nor should they presume to know what is acceptable to members of the public.
• Decisions about the technology and its uses will need to be updated frequently as new information becomes available.

The Resources section toward the close of the report offers links to related content in the following categories: US [United States] Government Response; Other Governmental and Nongovernmental Organizations; Digital Contact Tracing Experiences from Other Countries; Specific Digital Products/Apps; Polling; Popular Press; Commentaries; and Academic Literature.