Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

Dawson, Liza; Benbow, Nanette; Fletcher, Faith E.; Kassaye, Seble; Killelea, Amy; Latham, Stephen R.; Lee, Lisa M.; Leitner, Thomas; Little, Susan J.; Mehta, Sanjay R.; Martínez, Omar; Minalga, Brian; Poon, Art F. Y.; Rennie, Stuart; Sugarman, Jeremy; Sweeney, Patricia; Torian, Lucia V.; Wertheim, Joel O.

doi:10.1093/infdis/jiaa107

Cited by 37 publications

(44 citation statements)

References 31 publications

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“…Identifying and responding to recently transmitted HIV, the leading edge of the epidemic, is an important component of the multifaceted strategy necessary to reduce HIV transmission. However, HIV genetic cluster detection and response activities must be undertaken with community engagement and consideration of potential ethical issues [ 29 , 30 ]. As such public health initiatives are often conducted with waiver of participant consent, assurances to protect individual confidentiality and maintain data security are needed.…”

Section: Discussionmentioning

confidence: 99%

HIV-1 Transmission linkages among persons with incident infection to inform public health surveillance

et al. 2021

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Background We evaluated features of HIV transmission networks involving persons diagnosed during incident HIV infection (IHI) to assess network-based opportunities to curtail onward transmission. Methods Transmission networks were constructed using partial pol sequences reported to North Carolina surveillance among persons with recent (2014–2018) and past (<2014) HIV diagnoses. IHI were defined as documented acute infections or seroconversion. Demographic and virologic features of HIV genetic clusters (<1.5% pairwise genetic distance) involving ≥ 1 IHI were assessed. Persons with viral genetic links and who had diagnoses >90 days prior to an IHI were further characterized. We assessed named partner outcomes among IHI index persons using contact tracing data. Findings Of 4,405 HIV diagnoses 2014–2018 with sequences, there were 323 (7%) IHI index persons; most were male (88%), Black (65%), young (68% <30 years), and reported sex with men (MSM) risk (79%). Index persons were more likely to be cluster members compared to non-index persons diagnosed during the same period (72% vs. 49%) . In total, 162 clusters were identified involving 233 IHI, 577 recent diagnoses, and 163 past diagnoses. Most IHI cases (53%) had viral linkages to ≥1 previously diagnosed person without evidence of HIV viral suppression in the year prior to the diagnosis of the IHI index. In contact tracing, only 53% IHI cases named an HIV-positive contact, resulting in 0.5 previously diagnosed persons detected per IHI investigated. When combined with viral analyses, the detection rate of viremic previously diagnosed persons increased to 1.3. Interpretation Integrating public health with molecular epidemiology, revealed that more than half of IHI have viral links to persons with previously diagnosed unsuppressed HIV infection which was largely unrecognized by traditional contact tracing. Enhanced partner services to support engagement and retention in HIV care and improved case finding supported by rapid phylogenetic analysis are tools to substantially reduce onward HIV transmission.

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Section: Discussionmentioning

confidence: 99%

HIV-1 Transmission linkages among persons with incident infection to inform public health surveillance

et al. 2021

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“…As stated above, this knowledge can be extremely important for public health decisions on prevention efforts but can be abused in the wrong hands. It can lead to community distrust, fewer diagnoses, increased stigma, and ultimately more HIV transmissions and fewer people that receive antiviral treatment [6]. In jurisdictions with criminal HIV laws there is also the concern of prosecution of transmitting HIV [21].…”

Section: Arguments Against Documenting Historical Epidemiologymentioning

confidence: 99%

“…These kinds of analyses can provide immediate actionable information to contain future virus spread and also enroll undiagnosed individuals into healthcare. However, linking of cases by virus transmission is a sensitive issue, and it is important to communicate the value of these insights to both public health practitioners but also to the communities whose data are being used and preferably include them in the decision process [5,6].…”

Section: Ethical Aspects Of Genetic Tracking Of Hiv Transmissionsmentioning

confidence: 99%

“…Collectively, these databases likely represent the single largest, most well sampled, document on the historical and statistical properties of the HIV epidemic as it plays out in locations ranging from dispersed rural communities to large urban centers in the US and worldwide. Nevertheless, using these databases for public health surveillance is a complicated issue that needs to balance individual and public benefit with the potential harm to individuals and communities from misuse of these resources [5,6].…”

Section: Introductionmentioning

confidence: 99%

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What Should Health Departments Do with HIV Sequence Data?

Romero-Severson

Nasir

Leitner

2020

Viruses

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Many countries and US states have mandatory statues that require reporting of HIV clinical data including genetic sequencing results to the public health departments. Because genetic sequencing is a part of routine care for HIV infected persons; health departments have extensive sequence collections spanning years and even decades of the HIV epidemic. How should these data be used (or not) in public health practice? This is a complex; multi-faceted question that weighs personal risks against public health benefit. The answer is neither straightforward nor universal. However; to make that judgement—of how genetic sequence data should be used in describing and combating the HIV epidemic—we need a clear image of what a phylogenetically enhanced HIV surveillance system can do and what benefit it might provide. In this paper, we present a positive case for how up-to-date analysis of HIV sequence databases managed by health departments can provide unique and actionable information of how HIV is spreading in local communities. We discuss this question broadly, with examples from the US, as it is globally relevant for all health authorities that collect HIV genetic data.

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“…As advocates and scholars, including people living with HIV, we have been engaged in a critical debate over molecular HIV surveillance (MHS), as well as its antecedent and future practices. We have elaborated our concerns on the ethical implications and potential harms MHS poses to our communities, in academic fora (Bernard et al 2007;Chung et al 2019;Dawson et al 2020;Gilbert et al 2016;McClelland et al 2019;Nelson 2020), as public education initiatives (Legacy Project 2019; Sero Project 2020), in the media (Kempner 2019;Nelson 2020), and as protests (Artavia 2019). The critique of MHS has similarly been advanced by other scholars and activists concerned by the ethical challenges it poses (Benbow and Evans 2017;Coltart et al 2018;Gilbert et al 2016;Mutenherwa et al 2019;Sandset 2020).…”

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confidence: 99%