We Are People, Not Clusters!

Bernard, Edwin J; McClelland, Alexander; Cardell, B. S.; Chung, Cecilia; Castro-Bojorquez, Marco; French, Martin; Hursey, Devin; Khanna, Naina; Minalga, Mx Brian; Spieldenner, Andrew; Strub, Sean

doi:10.1080/15265161.2020.1809550

Cited by 21 publications

(26 citation statements)

References 19 publications

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“…Following outcry about MHS/CDR by networks of people living with HIV over concerns about program activities, the practice has been called into question and become controversial. Concerns expressed by advocates, ethicists, and scholars of HIV surveillance have included a lack of informed consent in HIV surveillance, issues related to bodily autonomy regarding the repurposing of clinical laboratory data for public health purposes, the potential to worsen institutionalized forms of racism in the United States through extracting data from disproportionately affected communities of color, a lack of demonstrated benefit, and how CDR might intersect with HIV criminalization 9–12 . 2018–2023 has seen protests, comments sent to federal agencies, concern from some health department staff, 1 calls for a moratorium on MHS/CDR, and debates in the public health, policy, and ethics literatures to which we have contributed 9,10,13–21 .…”

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confidence: 99%

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

2023

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Policy Points Molecular 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.

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confidence: 99%

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

2023

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“…For example, these tools can be used to indicate the country of origin of HIV infection along with the time of infection. More controversially, these tools have been used to infer the direction of transmission from one person to another [32 ▪ ]…”

Section: Criminalization and Molecular Surveillancementioning

confidence: 99%

“…Such critiques of molecular surveillance are grounded in longstanding critiques against the racist practices of medicine and public health, which view the bodies of people living with HIV solely as objects of risk and study, not subjects deserving of rights and decision-making [32 ▪ ]. In Canada, qualitative research with Indigenous women living with HIV has proposed the experience of over-surveillance by health professionals, police, and the law, as a form of ‘colonial surveillance and racism’ [39 ▪ ].…”

Section: Criminalization and Molecular Surveillancementioning

confidence: 99%

Beyond criminalization: reconsidering HIV criminalization in an era of reform

Hoppe

McClelland

Pass

2022

Current Opinion in HIV and AIDS

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Purpose of reviewThis paper reviews recent studies examining the application of human immunodeficiency virus (HIV)-specific criminal laws in North America (particularly the United States and Canada). In the wake of the development of new biomedical prevention strategies, many states in the United States (US) have recently begun to reform or repeal their HIV-specific laws. These findings can help inform efforts to 'modernize' HIV laws (or, to revise in ways that reflect recent scientific advances in HIV treatment and prevention). Recent findingsRecent studies suggest that HIV-specific laws disproportionately impact Black men, white women, and Black women. The media sensationally covers criminal trials under these laws, especially when they involve Black defendants who they often describe in racialized terms as predators. Activists contest these laws and raise concerns about new phylogenetic HIV surveillance techniques that have the potential to be harnessed for law enforcement purposes.

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“…They argued that neither ‘resistance’ nor ‘acceptance’ was sufficient to characterise participants’ views of digital health. Advocacy and community responses to growing uses of big data in US HIV surveillance, prevention and care also demonstrate concern about the potential harms for marginalised groups affected by HIV (including trans people, see Minalga et al, 2022 ), and represent persistent forms of distrust of public health institutions and the harms of lack of engagement with people living with HIV (Bernard et al, 2020 ; Molldrem et al, 2022 ). As Michaud et al ( 2022 ) have argued, people who use drugs are subject to a broad range of expanding surveillance practices and datafication throughout harm reduction services and clinical care, some of which are mundane and likely harmless and others of which can exacerbate distrust, proliferate criminalisation and compromise care, especially if shared across systems.…”

Section: Introductionmentioning

confidence: 99%

Engaging Stigmatised Communities in Australia with Digital Health Systems: Towards Data Justice in Public Health

et al. 2023

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Introduction In 2018, following government policy changes to Australia’s national electronic health record system, ‘My Health Record’, consumer advocates—including organisations representing people living with HIV, people who use drugs and sex workers—raised concerns about privacy and data security. Responding to these controversies, this study explores the practical, ethical and political complexities of engaging stigmatised communities with digital health systems. Methods We conducted 16 qualitative semi-structured interviews in 2020 with key informants representing communities who experience stigma, discrimination and marginalisation in Australia. These communities included people living with HIV, sex workers, people who inject drugs, gay and bisexual men and transgender and gender diverse people. We conducted a reflexive thematic analysis. Results Key informants were sceptical of proposed benefits of electronic health records for their communities, and concerned about privacy risks and the potential for discrimination. Meaningful consultation, consent mechanisms and tackling structural stigma were raised as solutions for engaging communities. Conclusions Although communities could benefit from being included in digital health systems, significant cultural, legal and social reforms from government were believed to be necessary to build trust in digital health systems. We argue that these forms of data justice are necessary for effective future systems. Policy Implications Engaging stigmatised communities—including in relation to gender, sexuality, sex work, drug use, HIV—requires a commitment to data justice. The design and implementation of digital health systems requires investment in ongoing and meaningful consultation with communities and representative organisations.

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We Are People, Not Clusters!

Cited by 21 publications

References 19 publications

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

Beyond criminalization: reconsidering HIV criminalization in an era of reform

Engaging Stigmatised Communities in Australia with Digital Health Systems: Towards Data Justice in Public Health

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