Surveillance of people with infectious diseases is a public health measure, yet such surveillance can lead to serious injustice. In an editorial in the American Journal of Bioethics, a group of bioethicists and activists draws upon their long experience from the HIV pandemic to direct attention to the inherent risks of data collection from vulnerable people: “We are people, not clusters”.
The essay focuses upon molecular HIV surveillance (MHS), emphasizing the history in which governments and public health agencies gathered data on HIV status and behaviors while following policies that led to criminalization. Surveillance is easily twisted to other purposes besides protecting the public from disease. The authors believe that COVID-19 pandemic has raised the prospect of further erosion of rights and criminalization of behavior.
I found the ending of the editorial to be powerful, sharing some of it on Twitter, and want to quote them at greater length here:
This editorial is an act of refusal, a refusal to allow our bodies to be treated as troves of data, and as risks to be calculated. We are people to be consulted, to be heard, and to be engaged with, on all aspects of our lives. As such, this editorial is also a rejection of MHS and the public health practices of objectification that have led us here. Instead, we call for participatory and community-located, intersectional, racial and viral justice approaches to respond to HIV. The first letter in HIV stands for Human; HIV molecules are connected to people, people who live in the social world, with rights and dignity. We look forward to further advancing the actualization of HIV data justice, where HIV responses are owned by communities, and where consent and autonomy are central. In 1983, people living with HIV stood in front of medical professionals in Denver and stated:
"We condemn attempts to label us as 'victims,' a term which implies defeat, and we are only occasionally 'patients,' a term which implies passivity, helplessness, and dependence upon the care of others. We are 'People With AIDS.'"
Today, we add to this statement: We are People, not clusters!
These ideas apply well beyond the borders of public health. Many social scientists and geneticists study people for many academic reasons. Too many ignore the side effects that their research may have on the people they study.
My first thought when reading the editorial’s headline, “We are people, not clusters,” was the clumsy term “population clusters” used in human genetics. It is another kind of subjectification, intended to provide an alternative way for human geneticists to talk about race without using the word. It is good to object that research participants are people with human relationships, not tokens of clusters.