UN Declaration of Human Rights Article 27 concerns around wording and conflation of roles

[pdehaye]

Please revise the language used throughout the documents, avoiding the use of the word "epidemiologist" as a stand-in for the conflation of several roles:

• the actor centralizing the data;
• the actor building analysis tools, pipelines, protocols, etc;
• the actor running those tools.

I suggest instead avoiding this conflation and using more neutral language reflecting the technical roles assumed by the different entities.

Your protocol seeks to limit the amount of data centralized in order - as stated - to "enable epidemiologists to improve their recommendations to policy makers and health authorities". This does not require that "the epidemiologists obtain an anonymized proximity graph with minimal information", but rather that some data is centralized and epidemiologists are able to push their computation to the centralized data. This enables - with no change to your protocol, but certainly some alignment on downstream analysis tooling - scenarios of deployment that might seem desirable from a security standpoint (such as at-risk-community-based computation of parameters of epidemiological relevance) or even also from a public health standpoint (since it would increase the quality of the collected data, given that a community member might have less to fear from some deployments than others, and would feel more engaged in the designing of policies to get out of the crisis).

It is a natural question to wonder which entities could then assume the role of centralizing this data. One possibility (to be adapted for civil law systems) would be bottom up data trusts, for instance, but this is clearly a separate question. In any case it would seem counterproductive to foreclose on our capacity to imagine creative solutions together due simply to poor wording.

Additionally, I would encourage anyone who thinks the word change that I am suggesting to be exotic to read a letter I recently (pre-COVID!) co-wrote in response to a Call for Contributions by the Committee on Economic, Social and Cultural Rights of the Office of the High Commissioner for Human Rights on a Draft General Comment on Science (i.e. tied to UN Declaration of Human Rights Article 27 on the right to share/participer/participar/участвовать in science):

We, as citizens, think this distinction between active participation and mere passive enjoyment of scientific advancement is crucial to our full flourishing as autonomous individuals, capable or even sometimes authorized to approach complex problems with a systematic mindset.

We each dedicate significant effort in methodologically understanding our world, our communities, our selves, and/or the interactions between these. Many of us also develop new ways for doing so, to enable active participation by others. All of us contribute to blurring the distinction between a citizen engaged in systematic discovery and a scientist employed in a traditional research institution.

We each recognize we benefit from communities and networks of peers engaging in a similar process of discovery, as well as proximate rights of access to information enabling us to learn from and spread new discoveries. For many problems the perspective of nontraditional researchers (e.g. patients and communities) is essential not only in order to fully understand our social or ecological environments, our bodies, or the practicality of solutions derived from formalized science, but also in redefining the process of science for instance in relation to diverse representation, ethics or data collection.

It would have been hard to be more prescient (while blind to COVID at the time), given that epidemiologists are now engaging in some of the most massive crowdsourcing effort on symptoms, household composition and lifestyle patterns.

[kennypaterson]

Please feel free to make a concrete suggestion for wording changes. We will be glad to consider it.

[pdehaye]

How about the "data custodian", and not breaking down further intermediate roles, except saying the custodian makes the data accessible to the epidemiologist's analyses ("analyst").

[pdehaye]

Re-reading the letter today, I observe that we used the language of "act of presence". We wrote this because we didn't know what else to write at the time. Our stance was more anticipatory, knowing that there would be unknowns ahead.

Of course, this language of "act of presence" acquires new relevance in light of the COVID crisis. As soon as COVID happened, I knew instinctively language would matter in framing the debate. This is what drove me to submit so early to filing a GitHub issue (within the first ten).

In itself, this GitHub issue, left unaddressed now for 27 days despite constructively engaging with the DP3T collaboration, is transforming into its own act of presence (thus compounding the severity of the problem).

I could expand at length - and document - the number of ways this language has proven harmful to DP3T's own stated goals, particularly in fighting PEPP's centralized model (since many DP3T collaborators care about that). Additionally, I am personally appalled at some public criticism received from some academic members of the DP3T collaboration, precisely leveraging the language of human rights to attempt at shaming the counter-voices that would be expressed at their efforts.

Judging the diversity of members of the consortium, and the local power plays tied to the first deployment of DP3T v1 in Switzerland, I question the diversity of voices within the DP3T collaboration.