Consent and criminalisation concerns over phylogenetic analysis of surveillance data

Chung, Cecilia; Khanna, Naina; Cardell, B. S.; Spieldenner, Andrew; Strub, Sean; McClelland, Alexander; French, Martin; Gagnon, Marilou; Guţă, Adrian

doi:10.1016/s2352-3018(19)30138-9

Cited by 27 publications

(20 citation statements)

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“…Guta et al (2016) have expressed concerns about the impacts of new forms of HIV surveillance in which traditional epidemiological data, combined with the integration of biomarkers such as viral load, are used to reach out to the most vulnerable people living with and affected by HIV. These concerns are shared by many activists, researchers, and policy advocates (Center for HIV Law and Policy 2019;Chung et al 2019;Kempner 2019;McClelland et al 2019). However, others actors in this milieu (including activists) are far more optimistic (see Evans and Benbow 2018).…”

Section: History and Context For Mhs And Cdrmentioning

confidence: 99%

“…The article was covered by the HIV press and generated expressions of concern (Kempner 2019). Critical responses also included a published correspondence in The Lancet HIV from a group of activists, researchers, and people living with HIV (Chung et al 2019). The Lancet HIV also published a reply to Chung et al (2019) by the three university-affiliated original study authors (Wertheim et la.…”

Section: Case 3: Controversy Surrounding Mhs and Transgender Women Inmentioning

confidence: 99%

“…Re-uses of clinical HIV data for public health surveillance and prevention do not require consent (Fairchild 2003, 615;Lee et al 2012). Further, there have not been comprehensive efforts to educate people living with HIV that data from routine clinical blood tests ordered by their medical providers are transmitted to departments of public health and systematically re-used (Chung et al 2019). The increased utilization of MHS data for prevention, often with vulnerable populations, is an increasing source of concern among advocates, researchers, and other stakeholders (Artavia 2019; Center for HIV Law and Policy 2019;Kempner 2019;McClelland et al 2019).…”

Section: Introductionmentioning

confidence: 99%

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Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

Molldrem

Smith

2020

The American Journal of Bioethics

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In the United States, clinical HIV data reported to surveillance systems operated by jurisdictional departments of public health are re-used for epidemiology and prevention. In 2018, all jurisdictions began using HIV genetic sequence data from clinical drug resistance tests to identify people living with HIV in "clusters" of others with genetically similar strains. This is called "molecular HIV surveillance" (MHS). In 2019, "cluster detection and response" (CDR) programs that re-use MHS data became the "fourth pillar" of the national HIV strategy. Public health re-uses of HIV data are done without consent and are a source of concern among stakeholders. This article presents three cases that illuminate bioethical challenges associated with re-uses of clinical HIV data for public health. We focus on evidence-base, risk-benefit ratio, determining directionality of HIV transmission, consent, and ethical re-use. The conclusion offers strategies for "HIV data justice." The essay contributes to a "bioethics of the oppressed."

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Section: History and Context For Mhs And Cdrmentioning

confidence: 99%

Section: Case 3: Controversy Surrounding Mhs and Transgender Women Inmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

Molldrem

Smith

2020

The American Journal of Bioethics

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“…While this debate on MHS is vital to our lives, and those we work with, we need a vision beyond the potential harms of the practice, to interrogate the ways of thinking and doing that got us here in the first place. In other venues, we have collectively elaborated how MHS data gathered without consent could be used to criminalize our communities, and those we work with (Chung et al 2019;McClelland et al 2019). When raising such concerns, we have been told by practitioners of MHS: "the public good of HIV surveillance justifies" the practice, which includes the denial of our rights to consent and autonomy over the uses of own data and biomaterial (Wertheim et al 2019).…”

Section: Toward Abolition Of Harmful Public Health Practicesmentioning

confidence: 99%

“…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%

We Are People, Not Clusters!

Bernard¹,

McClelland

Cardell³

et al. 2020

The American Journal of Bioethics

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Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data

et al. 2023

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Introduction The widespread implementation of molecular HIV surveillance (MHS) has resulted in an increased discussion about the ethical, human rights and public health implications of MHS. We narrate our process of pausing our research that uses data collected through MHS in response to these growing concerns and summarize the key lessons we learned through conversations with community members. Methods The original study aimed to describe HIV transmission patterns by age and race/ethnicity among men who have sex with men in King County, Washington, by applying probabilistic phylodynamic modelling methods to HIV‐1 pol gene sequences collected through MHS. In September 2020, we paused the publication of this research to conduct community engagement: we held two public‐facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback on our manuscript. During each of these meetings, we shared a brief presentation of our methods and findings and explicitly solicited feedback on the perceived public health benefit and potential harm of our analyses and results. Results Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, inference of transmission directionality and criminalization. Other critiques were specific to our research study and included feedback about the use of phylogenetic analyses to study assortativity by race/ethnicity and the importance of considering the broader context of stigma and structural racism. We ultimately decided the potential harms of publishing our study—perpetuating racialized stigma about men who have sex with men and eroding the trust between phylogenetics researchers and communities of people living with HIV—outweighed the potential benefits. Conclusions HIV phylogenetics research using data collected through MHS data is a powerful scientific technology with the potential to benefit and harm communities of people living with HIV. Addressing criminalization and including people living with HIV in decision‐making processes have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice. We close with specific opportunities for action and advocacy by researchers.

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Consent and criminalisation concerns over phylogenetic analysis of surveillance data

Cited by 27 publications

References 1 publication

Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

We Are People, Not Clusters!

Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data

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