Public health surveillance presents ethical dilemmas for public health advocates and community advocates alike. The data collected through public health surveillance, such as population-level information on disease prevalence and population size, contributes to planning and implementing service provision; but the way in which that data is collected and managed can present a real danger to the privacy and safety of individuals. Kavanagh et al. outline ethical issues of “improving” surveillance through the use of biometric identification (i.e. fingerprints, iris scanning) with a specific focus on hyper-criminalized communities who also are communities that have high prevalence of HIV—e.g., sex workers and people who inject drugs. The authors propose that public health administrators consider the appropriateness of using biometrics with these key populations by classifying populations as (1) jurisdictions in which a population may be criminalized formally or informally; (2) jurisdictions in which key populations face high stigma; (3) jurisdictions where key populations are not directly criminalized, there is low stigma, but there are also no legal protections; and (4) jurisdictions in which populations are explicitly protected by anti-discrimination law and policy and stigma is low.
The authors conclude that in most situations, key populations fall into either category (1) or (2) and the use of biometric identifiers in public health surveillance is not appropriate. Unfortunately, however, public health administrators do not use these categories to assess the safety of using surveillance to measure data points in certain communities.
It is CHLP’s position that, rather than place the burden on communities and their advocates to demonstrate that intrusive, identifiable surveillance approaches will cause harm, public health bodies proposing such measures have an affirmative ethical obligation to demonstrate that a particular form of surveillance is needed, that its implementation does not have potential unintended negative consequences for those under surveillance, and that the surveillance offers the most effective use of available resources in terms of getting needed services to affected communities.