Molecular HIV Surveillance “a perfect storm” in the context of HIV-related criminalisation

A new briefing paper published today by Positive Women’s Network-USA on behalf of the HIV JUSTICE WORLDWIDE coalition aims to support people living with HIV, activists, legal experts, and human rights campaigners in understanding the complexities and consequences of molecular HIV surveillance (MHS). 

Molecular HIV Surveillance: A global review of human rights implicationsprovides a detailed explanation of what MHS is and how it is used across the globe, including how the technology works, where it is being conducted, and by whom. The paper describes growing human rights concerns relating to the use of this technology and goes on to list a number of recommendations for the use of MHS which were gathered from an international literature review and from members of the Expert Advisory Group.*

Molecular HIV surveillance (MHS) is an umbrella term that describes a wide range of practices focused on the monitoring of HIV variants and the differences and similarities between them for scientific research, public health surveillance, and intervention.

To conduct MHS, scientists rely on the results of HIV genetic sequencing tests taken from people living with HIV – these tests are often done before prescribing HIV medication to determine if the individual has a strain of HIV that is resistant to certain treatments. Interest in, and use of, MHS for reasons other than tailoring treatment regimens is increasing globally, however. Of particular concern, in some regions, MHS is being conducted and HIV data is being shared in ways that put the rights and safety of people living with HIV in jeopardy. 

“HIV is highly stigmatised and communities that are most vulnerable to acquiring HIV are already highly policed and at risk for violence” said Naina Khanna, co-executive director of Positive Women’s Network-USA, a US-based membership organisation led by women and people of transgender experience living with HIV. “In more than 30 states in the US alone, and over 100 countries around the world, people with HIV can be criminalised on the basis of their health condition. Taking this kind of data from people without their consent or knowledge and storing or sharing it without adequate protections is extremely risky and could come at the cost of someone’s personal safety, their livelihood, and in the case of HIV criminalisation, their freedom.”

The paper highlights how HIV experts and advocates have raised a range of human rights concerns about this technology. These include: 

  • Consent and autonomy; 
  • Lack of community consultation; 
  • Increased stigma on targeted communities; 
  • Privacy and data protections; 
  • Whether or not the technology can be used to “prove” direct transmission; and,
  •  How MHS may intensify HIV criminalisation within communities who are already marginalised and oppressed.

Edwin J Bernard, Executive Director of the HIV Justice Network and global co-ordinator of the HIV JUSTICE WORLDWIDE coalition added: “MHS treats people living with HIV as ‘clusters’ and targets of public health interventions, rather than the beneficiaries of public health. When you combine MHS with HIV criminalisation it’s a perfect storm. That’s why I commissioned PWN-USA to produce this briefing paper as a first step to understand the problems and to suggest a range of possible solutions. With increased knowledge on the practices of MHS, individuals and organisations can be better equipped to advocate for ending research and surveillance practices that have the potential to harm the rights, autonomy, and well-being of people living with HIV.”

The paper provides wide-ranging recommendations for change aimed at various stakeholders, highlighting five key areas of action:

  1.   Take seriously and act upon community concerns about MHS.
  2.   Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
  3.   MHS implementers must demonstrate a clear public health benefit that outweighs the potential harms of MHS, including by ensuring protections (i.e., data privacy, legal protections, social harms prevention, etc). These demonstrated benefits of MHS must measurably include people living with HIV.
  4.   Providers ordering HIV sequencing must inform people living with HIV about how their blood and data are being used for MHS purposes and be allowed to withdraw the consent if they so wish, without fear of negative consequences to their HIV treatment and care.
  5.   Implementers of MHS should publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that MHS is never used in criminal, civil, or immigration investigations or prosecutions.

The paper is available to download now in English at https://www.hivjusticeworldwide.org/en/mhs/ 

It will be available soon in French, Russian and Spanish. 

Watch the launch video below:

Follow the online conversation on Twitter by using the hashtags #EndMHS #DataPrivacy #DataProtection #HIVJustice and by following @HIVJusticeNet @uspwn

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

*MHS Expert Advisory Group

  • Naina Khanna & Breanna Diaz, Positive Women’s Network-USA
  • Edwin J. Bernard, HIV Justice Network
  • Marco Castro-Bojorquez, HIV Racial Justice Now (in memoriam)
  • Brian Minalga, Legacy Project
  • Andrew Spieldenner, US People Living with HIV Caucus
  • Sean Strub, Sero Project

WATCH HIV Justice Live! (Ep 4): How to advocate for prosecutorial guidance for HIV-related cases

The fourth episode of HIV Justice Network’s web show, HIV Justice Live! that streamed live on July 14 is now available to watch on YouTube.  The episode, which our colleagues at the HIV Legal Network called a master class in advocacy” discussed the newly launched UNDP’s Guidance for Prosecutors on HIV-related criminal cases and provided insights into how to work with prosecutorial authorities so that they have a clear understanding of how to – and more importantly how not to – use HIV criminalisation laws.

Guidance like this is a good example of a ‘harm reduction’ approach if you can’t change or repeal HIV criminalisation laws, and adopting such guidance can result in fewer miscarriages of justice, as well as improve the criminal legal system’s understand of, and approach to, people living with HIV.  Once implemented it’s also a good way of holding prosecutors to account.

The Guidance was developed for UNDP by our HIV JUSTICE WORLDWIDE colleagues, Richard Elliott and Cécile Kazatchkine of the HIV Legal Network. The process, which took two years, involved multiple consultations. Several other colleagues, including HJN’s Executive Director Edwin J Bernard, HJN Supervisory Board member Lisa Power, and HJN Global Advisory Panel member Edwin Cameron were part of the Project Advisory Committee.

The episode, hosted by Edwin J Bernard and featuring UNDP’s Kene Esom alongside Lisa Power and Richard Elliott, also included a special edit of HJN’s documentary, Doing HIV Justice, which demystifies the process of how civil society worked with the Crown Prosecution Service of England and Wales to create the world’s first policy and guidance for prosecuting the reckless or intentional transmission of sexual infection.

The full-length, 30-minute version of this documentary is now available as part of a YouTube playlist that also features two other educational and informative videos: an introduction by the CPS’s Arwel Jones with some useful tips about how to engage with prosecutors, and a workshop that took place after the world premiere screening in Berlin, featuring Lisa Power and Catherine Murphy (who helped advocate for the implementation of guidance in England & Wales, and Scotland, respectively) as well as former UNAIDS Senior Human Rights and Law Adviser, Susan Timberlake.

HJN proudly joins the Support.Don’t Punish campaign

The HIV Justice Network is a proud supporter of the Support. Don’t Punish campaign now in its ninth year. Tomorrow, Saturday 26 June, is the campaign’s yearly high point, the Global Day of Action.

According to the campaign’s website, Support.Don’t Punish is a global grassroots-centred initiative in support of harm reduction and drug policies that prioritise public health and human rights. The campaign seeks to put harm reduction on the political agenda by strengthening the mobilisation capacity of communities targeted by the “war on drugs” and their allies, opening dialogue with policy makers, and raising awareness among the media and the public.

The theme for this year’s Global Day of Action is “Undoing the ‘war’, building the future that our communities have always deserved”. The date, 26th June is symbolic as it is used by most governments to commemorate the International Day Against Drug Abuse and Illicit Trafficking to highlight their so-called ‘achievements’ in “the war on drugs.”

The Support. Don’t Punish campaign aligns with the following key messages:

  • The drug control system is broken and in need of reform.
  • People who use drugs should no longer be criminalised.
  • People involved in the drug trade should not face harsh or disproportionate punishments, where retained.
  • The death penalty should never be imposed for drug offences.
  • Drug policy should focus on health, well-being, and harm reduction.
  • Drug policy budgets need rebalancing to ensure health and harm reduction-based responses are adequately financed.

Last year, despite the COVID-19 pandemic, the Global Day of Action saw 288 events in 239 participating cities in 90 countries. The activities organised were incredibly varied and involved over 150 community representatives. In twelve of the regions, networks of people who use drugs were joined by initiatives from convergent movements (including people living with HIV, sex workers, and service providers), strengthening a solidarity block against criminalisation.

This year, we urge you to join the Support.Don’t Punish Global Day of Action. Visit their homepage to check out where activities are taking place near you, and use these resources to amplify the campaign’s messages on social media, including on Facebook, Twitter and Instagram.

HJN looks to the future with our new Strategic Plan (2022-2026)

Today, the HIV Justice Network looks to the future with the publication of our new Strategic Plan, covering the years 2022-2026.

People living with HIV remain firmly at the heart of this strategy, and all our work aims to contribute towards an environment in which they can feel safe, more empowered, and able to enjoy their human rights.

However, we also recognise that HIV criminalisation can disproportionately impact people who are either additionally criminalised, or who are otherwise mistreated by discriminatory legal systems – or both and we seek to better understand and proactively address intersectional stigma, discrimination, and criminalisation.

Mindful of the many challenges ahead in removing discriminatory laws, policies, and practices that unjustly regulate, control, or criminalise people living with HIV, in all of our diversities, this Strategic Plan focuses on five specific areas that we, as an organisation, seek to address in the next five years. These also align well with the Global AIDS Strategy 2021-2026 and reflect the 2021 Political Declaration on HIV and AIDS.

We also believe there is significant learning from our work on HIV criminalisation that can be leveraged to support the COVID-19 response and recovery, as well as future pandemic preparedness.

  • We want legal reform so that there are fewer unjust HIV-related criminal laws and limited application of other criminal laws to people living with HIV.
  • We want to put the ‘justice’ back into the criminal legal system, ensuring that key stakeholders at the front end of the criminal legal system are more aware of standards and norms around HIV and human rights, science, and public health, and treat people living with HIV with dignity.
  • We want to change the media narrative so that the stigma and intersecting discrimination that is created by HIV criminalisation and perpetuated through harmful narratives in the media is challenged and reframed.
  • We want rights-based public health policies and practices, and seek to ensure greater recognition and awareness that HIV and other communicable diseases such as hepatitis, tuberculosis, and COVID-19, as well as future pandemics, are public health issues, not criminal issues.
  • And we want to grow the HIV Justice Movement, by collectively building community solidarity across movements and individual power and agency for all those who are marginalised and under-served.

Based on our strengths and expertise, we have developed four strategic approaches to achieve these goals, within an overall framework of intersectional analysis: building the evidence base; producing and collating advocacy tools and resources; convening, connecting, and supporting; and representation and awareness-raising.

Edwin Bernard, HJN’s Executive Director, hopes the new strategy will strengthen existing partnerships and create new ones. “The success of this Strategic Plan will only be possible when people living with HIV and our allies build power together. We understand that we can achieve far more by working in partnership with others, and so we will continue to rely on the support of our members, as well as current and future partners and funders.”

Kevin Moody, who serves as the Chair of the Supervisory Board of HJN, said the new strategy “… acknowledges that the quality of life of people living with HIV is dependent on their ability to live free of discrimination and criminalisation.”

“Our new strategy further recognises that people living with HIV experience oppression based on multiple factors and, therefore, aims to build strategic partnerships to reduce intersectional aspects of discriminatory laws, policies, and practices around the world,” he added.

The Strategic Plan was developed through a two-stage process. A detailed Strategic Review took place between August and November 2020, followed by a strategic planning process between January and April 2021. This process was participatory and inclusive and involved a range of internal and external stakeholders.

We would like to thank all the individuals and organisations that contributed to the development of this Strategic Plan, as well as the Robert Carr Fund for funding this process, and we look forward to working with all of you in its delivery.

View our Strategic Plan 2022-2026