Phenotyping as disciplinary practice: Data infrastructure and the interprofessional conflict over drug use in California

Abstract

The narrative of the digital phenotype as a transformative vector in healthcare is nearly identical to the concept of “data drivenness” in other fields such as law enforcement. We examine the role of a prescription drug monitoring program in California—a computerized law enforcement surveillance program enabled by a landmark Supreme Court case that upheld “broad police powers”—in the interprofessional conflict between physicians and law enforcement over the jurisdiction of drug use. We bring together interview passages, clinical artifacts, and academic and gray literature to investigate the power relations between police, physicians, and patients to show that prescribing data appear to the physician as evidence of problematic patient behavior by the patients, and to law enforcement as evidence of physician misconduct. In turn, physicians have adopted a disciplinary approach to patients, using quasi-legalistic documents to litigate patient behavior. We conclude that police powers have been used to pave data infrastructure through a contested jurisdiction, and law enforcement have used that infrastructure to enroll physicians into the work of disciplining patients.

Predictive analytics in HIV surveillance require new approaches to data ethics, rights, and regulation in public health

“…These systems necessarily function through classifying. By identifying people's probability of falling out of care or of transmitting HIV, predictive models create new forms of institutionally-defined deviance (Hussain & Bowker, 2021;Rowe, 2021). Processes of classifying people in relation to HIV risk map onto a growing trend in the TasP era, where continuous monitoring of viral load to ensure retention in care is leading to new forms of socio-legal and biomedical privilege for people living with HIV who can maintain a suppressed viral load (Guta & Newman, 2021;Lloyd, 2018;Molldrem, 2020;Molldrem & Smith, 2020).…”

“…Preventing transmission and providing people living with HIV support to stay in care are laudable goals. However, novel applications of predictive analytics in HIV programs raise questions about the role of big data in public health and the potentially harmful effects of classifying people living with HIV in hierarchical frameworks that separate 'good' or compliant biomedical subjects from 'bad' or medically incompliant persons (see, Lloyd, 2018, see also Hussain & Bowker, 2021;Rowe, 2021). In this commentary, we describe ethical problems arising from big data interventions in HIV surveillance and suggest some potential pathways for reform.…”

Between Care and Control: Examining Surveillance Practices in Harm Reduction

“…One example of embedded surveillance in OAT is the recruitment of pharmacists to monitor for “aberrant behaviors” regarded as evidence of diversion of opioid agonist medication ( Bach & Hartung, 2019 ), a shift from passive surveillance (e.g., information gathering) to active surveillance (e.g., intervening or governing behavior directly) ( Holmgren et al, 2020 ). Others have raised similar concerns regarding the enrollment of physicians by law enforcement in disciplinary interventions aimed at opioid users in service of prescription monitoring ( Hussain & Bowker, 2021 ). We raise OAT here not to reiterate calls for systemic and regulatory changes that are well documented elsewhere (see Crawford, 2013 ; Frank, 2021 ; McEachern et al, 2019 ; McNeil et al, 2020 ), but to note the extent to which surveillance is embedded in the design of OAT and to foreground how these practices are exported into other health and harm reduction services.…”

“…Herein we can see a broader social process at play in which therapeutic workers take on surveillant functions, and at times engage in penalizing practices toward PWUD. (See Hussain & Bowker, 2021 , for the enlistment of physicians by law enforcement in prescription drug monitoring and governance.) Frequently, personal health data collected by these surveillance workers are repurposed across institutional sites or mobilized for other uses, creating a data double whose utility serves to blur the distinction between information acquired for clinical, evaluative, and epidemiological reasons.…”

Digital phenotyping – Editorial

“…Birk et al pay attention in their commentary to the impact of digital phenotyping on the pathologization of mental distress (Birk et al, 2021), while Green and Svendsen warn of the historical biases in automated diagnostic technologies (Green and Svendsen, 2021). Hussain and Bowker provide a critical commentary on the enrolment of physicians in digitally enabled policing of prescription practices (Hussain and Bowker, 2021), and Lucivero and Halliwell conclude the special theme with a critical comment on the development of RADAR-AD, an Alzheimer's prediction system, and the Minerva Initiative, which seeks to deliver phenotypes of rare disorders (Lucivero and Hallowell, 2021).…”