Digital Contact Tracing for Pandemic Response - Edited highlights
- Diarmid Mackenzie
Digital Contact Tracing for Pandemic Response Kahn, Jeffrey, Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies
Full paper here: https://muse.jhu.edu/book/75831/pdf
Selected highlights
An early dig at Apple & Google...
Technology companies alone should not control the terms, conditions, or capabilities of DCTT, nor should they presume to know what is acceptable to members of the public.
On values...
Although privacy is a key value, individuals and communities may also value efficiency, equity, liberty, autonomy, economic well-being, companionship, patriotism, or solidarity, among other values.
In favour of the “middle ground” (which explicitly includes Safe Paths)...
Perhaps the most promising approach in this middle ground involves allowing users to turn over both proximity data and GPS location data (i.e., cell-site location data) to public health authorities on a voluntary basis.
Ethics comparison with manual contact tracing with regard to collection of sensitive data...
From an ethics perspective, the collection and use of sensitive data in manual contact tracing efforts (described above) is typically seen as ethically justifiable so long as there is sufficient public health benefit and need.
More on sharing sensitive data...
The point is that privacy-related harms are not the only relevant harms to individuals that we should consider when assessing DCTT
someone who has been alerted by an app that he had a “proximity event” with a person who has tested positive for SARS-CoV-2 may wish he had location data to share with public health authorities in order to help ascertain whether this event is a cause for concern or whether it is likely a false positive
Summing up arguments against the minimal (PPPT/GAEN) approach...
All in all, the arguments that DCTT should be designed as a minimal system are not convincing. Rather, DCTT should be developed through a “values in design” approach, with a core set of features that protect privacy, with enough flexibility to be used differently depending upon local conditions, evolving evidence, and individual preferences.
Nevertheless still very clear that privacy is important….
To avoid the stigma and potential discrimination that can result from being identified as COV+, DCTT must never make data publicly available that could be used to identify persons who have tested positive. Safeguards must be in place to ensure that any identifiable data that may be gathered for public health purposes are protected.
Other interesting points / references
On “values in design”…
As Flanagan, Howe, and Nissenbaum (2008) conceptualized in 2008, we should take a “values in design” approach to DCTT—an approach that designs a broader range of values, such as those enumerated above, into technology.
On experiment / evaluation design…
Researchers may also be able to contribute innovative methods to systematically and rapidly evaluate candidate technologies, such as by deploying cluster randomized stepped wedge (Hemming et al. 2015) or adaptive trial designs and techniques (e.g., response-adjusted randomization) (Pallmann et al. 2018).
Advice on consent UX…
For example, a simple open-source smartphone consent module that has been developed by Sage Bionetworks for research uses could be adapted to the public health surveillance context and to DCTT (Doerr, Suver, and Wilbanks 2016).
A clear and concise module consisting of basic disclosure and voluntary authorization should be developed to accompany DCTT. This module should not take the form of “clickwrap” terms of service or end-user agreements but rather provide only essential information necessary for an individual to make a decision. More detailed disclosures (such as FAQs in plain language) should be made easily accessible to those who wish to learn more, with no hidden surprises.
On incentives...
In the context of COVID-19, incentives that might be both effective and ethically acceptable could include a relatively small monetary token, free or discounted mobile phone service for a period of time, or credit to be used by means of a mobile phone.
On digital disparity…
One possible mitigation to the challenge of digital disparity—though it does not solve the underlying challenge of ensuring net efficiency across systems—might be to provide mobile phones or other devices and data packages to those who would otherwise be left out.