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Global health agencies are increasingly promoting the scale-up of next-generation whole genome sequencing (NG-WGS) of pathogens into infectious disease control programs, including for tuberculosis (TB). However, little is known about how stakeholders in low-to-middle income countries (LMICs) understand the ethics, benefits, and risks of these proposals. We conducted a qualitative study in Greater Gaborone, Botswana to learn how TB stakeholders there viewed a potential scale-up of NG-WGS into Botswanas TB program. We conducted 30 interviews and four deliberative dialogues with TB stakeholders based in Greater Gaborone, the countrys largest city and capital. We created and showed participants an animated video series about a fictional family that experienced TB diagnosis, treatment, contact tracing, and data uses that were informed by NG-WGS. We analyzed transcripts using reflexive thematic analysis. We found broad support for the scale-up of TB NG-WGS in Botswana, owing to perceived benefits. Support was qualified with statements about ensuring adequate planning, resource-allocation, community and stakeholder engagement, capacity-building, and assessing ethical norms around publishing data. Our results suggest that scaling up NG-WGS for TB in Botswana would be supported by stakeholders there, contingent upon the government and other entities adequately investing in the initiative. These findings are relevant to other LMICs considering scale-ups of NG-WGS and related technologies for infectious diseases and suggest the need for sustained research into the acceptability of pathogen sequencing in other contexts.

ObjectiveQualitative methods are particularly well-suited to studying the complexities and contingencies that emerge in the development, preparation, and implementation of technological interventions in real-world clinical practice, and much remains to be done to use these methods to their full advantage. We aimed to analyze how qualitative methods have been used in health informatics research, focusing on objectives, populations studied, data collection, analysis methods, and fields of analytical origin.MethodsWe conducted a scoping review of original, qualitative empirical research in JAMIA from its inception in 1994 to 2019. We queried PubMed to identify relevant articles, ultimately including and extracting data from 158 articles.ResultsThe proportion of qualitative studies increased over time, constituting 4.2% of articles published in JAMIA overall. Studies overwhelmingly used interviews, observations, grounded theory, and thematic analysis. These articles used qualitative methods to analyze health informatics systems before, after, and separate from deployment. Providers have typically been the main focus of studies, but there has been an upward trend of articles focusing on healthcare consumers.DiscussionWhile there has been a rich tradition of qualitative inquiry in JAMIA, its scope has been limited when compared with the range of qualitative methods used in other technology-oriented fields, such as human-computer interaction, computer-supported cooperative work, and science and technology studies.ConclusionWe recommend increased public funding for and adoption of a broader variety of qualitative methods by scholars, practitioners, and policy makers and an expansion of the variety of participants studied. This should lead to systems that are more responsive to practical needs, improving usability, safety, and outcomes.

Health policies and the problems they constitute are deeply shaped by multiple publics. In this article we conceptualize health policy counterpublics : temporally bounded socio-political forms that aim to cultivate particular modes of conduct, generally to resist trajectories set by arms of the state. These counterpublics often emerge from existing social movements and involve varied forms of activism and advocacy. We examine a health policy counterpublic that has arisen in response to new forms of HIV public health surveillance by drawing on public documents and interview data from 2021 with 26 stakeholders who were critical of key policy developments. Since 2018, the national rollout of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs in the United States has produced sustained controversies among HIV stakeholders, including among organized networks of people living with HIV. This article focuses on how a health policy counterpublic formed around MHS/CDR and how constituents problematized the policy agenda set in motion by federal health agencies, including in relation to data ethics, the meaningful involvement of affected communities, informed consent, the digitization of health systems, and HIV criminalization. Although familiar problems in HIV policymaking, concerns about these issues have been reconfigured in response to the new sociotechnical milieu proffered by MHS/CDR, generating new critical positions aiming to remake public health. Critical attention to the scenes within which health policy controversies play out ought to consider how (counter)publics are made, how problems are constituted, and the broader social movement dynamics and activist resources drawn upon to contest and reimagine policymaking in public life. [ABSTRACT FROM AUTHOR]

The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals' routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals' rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders. In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues. Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals' data are used. MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes. [ABSTRACT FROM AUTHOR]

Policy PointsMolecular HIV surveillance and cluster detection and response (MHS/CDR) programs have been a core public health activity in the United States since 2018 and are the "fourth pillar" of the Ending the HIV Epidemic initiative launched in 2019.MHS/CDR has caused controversy, including calls for a moratorium from networks of people living with HIV. In October 2022, the Presidential Advisory Council on HIV/AIDS (PACHA) adopted a resolution calling for major reforms.We analyze the policy landscape and present four proposals to federal stakeholders pertaining to PACHA's recommendations about incorporating opt‐outs and plain‐language notifications into MHS/CDR programs. [ABSTRACT FROM AUTHOR]

Emerging Long COVID research indicates the condition has major population health consequence. Other chronic conditions have previously been associated with functional and mental health challenges – including depression, anxiety, post-traumatic stress disorder (PTSD), suicide ideation, substance use and lower life satisfaction. This study explores correlations between self-reported Long COVID, functional and mental health challenges among a random community-based sample of people (n = 655) aged 20–50 years who contracted COVID-19 prior to vaccination in a Texas county. A random sample of eligible participants was mailed a link to participate in a semi-structured questionnaire. Participant responses, including open-ended responses regarding their experience following COVID-19, were paired with health system data. Long COVID was associated with increased presence of depression (13% increase), anxiety (28% increase), suicide ideation (10% increase), PTSD (20% increase), and decreased life satisfaction and daily functioning. Structural equation modeling, controlling for sociodemographic variables and imposing a theoretical framework from existing chronic disease research, demonstrated correlations between Long COVID and higher PTSD, suicide ideation and lower life satisfaction were mediated by higher daily functional challenges and common mental disorders. Basic and applied, interdisciplinary research is urgently needed to characterize the population-based response to the new challenge of Long COVID. [ABSTRACT FROM AUTHOR]

In recent years, applications of big data-driven predictive analytics in public health programs have expanded, offering promises of greater efficiency and improved outcomes. This commentary considers the turn toward predictive modeling in US-based HIV public health initiatives. Through two case studies, we analyze emergent ethical problems and risks. We focus on potential harms related to (1) classifying people living with HIV in public health systems, (2) new ways of combining and sharing individuals' health data that predictive approaches employ, and (3) how new applications of big data in public health challenge the underlying logics and regulatory paradigms that govern data re-uses and rights in public health practice. Drawing on critical technology scholarship, critical bioethics, and advocacy by organized networks of people living with HIV, we argue that stakeholders should enter into a new range of reform-oriented conversations about the regulatory frameworks, ethical norms, and best practices that govern re-uses of HIV public health data in the era of predictive public health interventions that target individuals. [ABSTRACT FROM AUTHOR]