When law and science part ways: the criminalization of breastfeeding by women living with HIV

The HIV Justice Network (HJN) has been monitoring a disturbing phenomenon — at least 12 women living with HIV have faced criminal prosecution in relation to breastfeeding or comfort nursing.

In addition, women living with HIV have been threatened with punitive public health processes and child protection interventions for breastfeeding their children in multiple countries.

To bring this important issue to the attention of women’s health experts and advocates, HJN worked with our HIV JUSTICE WORLDWIDE partners to write a paper for a Special Collection on Women’s Health and HIV for the peer-reviewed, open access journal Therapeutic Advances in Infectious Diseases.

In “When law and science part ways: the criminalization of breastfeeding by women living with HIV,” published last week, Alison Symington (HJN’s Senior Policy Analyst), Nyasha Chingore-Munazvo (Programmes Lead, AIDS and Rights Alliance of Southern Africa) and Svitlana Moroz (Chair of the Eurasian Women’s Network on AIDS) place the criminalisation of women with HIV for breastfeeding within the context of current medical recommendations and cultural views of breastfeeding. They review the criminal cases against women living with HIV for breastfeeding around the globe, examine the injustice of these prosecutions, and provide recommendations for decriminalisation.

This Special Collection includes papers addressing a wide range of health issues impacting women with HIV. According to lead author Alison Symington, “We felt it was important to submit a paper on breastfeeding and HIV criminalisation because so few people are aware of these horrible cases. Healthcare providers have an important role to play in protecting women from punitive actions and providing them with information and support so that they can make the best decisions for themselves and their children.”

To make the paper even more widely accessible, HJN has provided translations into French, Russian and Spanish.

It is HJN’s aim to collaborate with advocates, researchers, service providers, organisations and community members around the world to raise awareness and prevent further unjust prosecutions against women living with HIV who breastfeed or comfort nurse. We are therefore grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work.

Further resources

Mwayi’s Story is a short film about courage, and about women standing up for their rights. The film is based on a real case in Malawi and the subsequent successful advocacy to prevent an HIV criminalisation statute being passed. The full story of the woman who was prosecuted for briefly breastfeeding another woman’s baby is told in an HJN feature, It Takes More Than A Village to End HIV Criminalisation, by Sally Cameron, based on a report by Peter Gwazayani, Edna Tembo and Charity Mkona.

Why people living with HIV should not be criminalised for donating blood

Preventing the transmission of blood-borne infection by imposing limitations on the donation of blood is an important and legitimate public health objective.

Since the beginning of the HIV epidemic, certain groups – including, but not limited to, gay men and other men who have sex with men – have been subjected to restrictions on their ability to give blood.

Sustained advocacy by gay rights organisations in many high-income countries has focused on the discriminatory nature of these so-called ‘gay blood bans’, highlighting significant advances in blood screening capabilities. This has led to a general softening of restrictions on blood donations for gay men in many of these countries – allowing donations with ‘deferral periods’, or allowing donations based on individual risk assessments.

However, this advocacy has generally not translated into the removal of HIV-specific criminal laws for donating blood, nor has there been a call for a moratorium on singling out people living with HIV for donating blood using non-HIV-specific general criminal laws – even though many of the same public health and human rights arguments apply to both the so-called ‘gay blood bans’ and to HIV criminalisation more generally.

That is why today, the HIV Justice Network has published Bad Blood: Criminalisation of Blood Donations by People Living with HIV. The report was written by Elliot Hatt and edited by Edwin J Bernard, based on research undertaken by Sylvie Beaumont, with additional input provided by Sarai Chisala-Tempelhoff and Paul Kidd (HIV Justice Network’s Supervisory Board); Sean Strub (Sero Project) and Robert James (University of Sussex).

We found that 37 jurisdictions in 22 countries maintain laws that criminalise people with HIV for donating blood. Notably, 15 jurisdictions in the United States (US) have laws which specifically criminalise blood donations by people living with HIV, while four US states – California, Illinois, Iowa, and Virginia – have repealed laws which previously criminalised this conduct.

Although prosecutions are relatively rare, we are aware of at least 20 cases relating to blood donation since 1987. Half of these cases have been reported in Singapore, including two as recently as 2021.

We argue that the criminalisation of blood donations by people with HIV is a disproportionate measure – even if the aim of protecting public health through the prevention of transfusion-transmitted infection is legitimate – and is the result of both HIV-related stigma and homophobia. It is not supported by science.

There is no good reason for any country or jurisdiction to have HIV-specific criminal laws – whether they focus on blood donation or on sexual exposure or transmission. HIV-specific criminal laws are discriminatory and stigmatising, especially since people with other serious blood borne infections – including hepatitis B and C and syphilis – are not singled out with specific laws, nor for prosecution under general criminal laws.

Blood donation criminal laws focused on HIV should be repealed, prosecutions based on general laws should end, and instead science-informed measures – such as individual donor risk assessments and universal blood screening – should be relied on to protect the public against transfusion-transmitted infection.

Read the report at: https://www.hivjustice.net/publication/badblood

Advancing HIV Justice 4: new report highlights more successes, continued challenges

A new report published today (July 22nd 2022) by the HIV Justice Network (HJN) on behalf of HIV JUSTICE WORLDWIDE shows that the global movement to end HIV criminalisation continues to achieve remarkable successes, despite the many challenges that COVID-19 has brought.

Advancing HIV Justice 4: Understanding Commonalities, Seizing Opportunities provides a progress report of achievements and challenges in global advocacy against HIV criminalisation. The report generally covers a three year period ending 31 December 2021 where Advancing HIV Justice 3 ended. However, significant law reform developments that took place in the first quarter of 2022 are also included in report’s maps and analysis.

The successes

During the reporting period, four HIV criminalisation laws were repealed; another HIV criminalisation law was found to be unconstitutional; and six laws were ‘modernised’ (i.e. applied up-to-date science on HIV-related risk or harm and/or legal and human rights principles to limit the application of the law) five of which were in the United States.

In addition, we saw precedent-setting cases in four countries and policy recommendations or improvements in four further countries — all of which have the potential to limit the overly broad application of the law to people living with HIV based on HIV-positive status.

While legislative processes slowed down or stalled in some places due to COVID-19 diminishing capacity for advocacy, more HIV criminalisation laws were modernised or repealed in the United States than during any other time period, the realisation of a maturing PLHIV-led HIV decriminalisation movement that began a decade or more ago.

These outcomes were primarily due to sustained advocacy – most of it led by PLHIV networks working with allies – using a wide range of strategies. These are analysed in the report by HJN’s senior policy analyst, Alison Symington.

The challenges

However, too many HIV criminalisation cases and continued high numbers of HIV-related criminal laws continue to be of great concern, requiring more attention, co-ordinated advocacy, and funding.

Our global audit of HIV-related laws found that a total of 82 countries (111 jurisdictions) have criminal laws that are HIV-specific. Of those, we are aware of 52 jurisdictions in 35 countries that have applied their HIV-specific criminal laws.

Another 89 jurisdictions in 48 countries have applied non-HIV-specific, general criminal laws in an overly broad manner since the first prosecution in 1986.

Our case analysis shows that HIV criminalisation continues to disproportionately impact women, racial and ethnic minorities, migrants, gay men and other men who have sex with men, transgender people, and sex workers.

Although the total number of cases has diminished in some US states as well as in countries that were previously HIV criminalisation hotspots – Canada, Czech Republic, Norway, Sweden, and Zimbabwe – too many unjust prosecutions and convictions continue to be reported.

During the reporting period, we recorded 275 cases in HJN’s Global HIV Criminalisation Database. However, when we include case numbers from several Eastern European and Central Asian countries that provide official data, we estimate almost 700 criminal cases over the reporting period.

Notwithstanding the limitations of tabulating cases globally, the highest number of reported cases during the period covered by this report were in:

The report is available to download in English, French, Russian and Spanish.

Acknowlegements

Advancing HIV Justice 4 was conceived and edited by HJN’s executive director, Edwin J Bernard, and HJN’s senior policy analyst, Alison Symington. Alison Symington researched and wrote all chapters except for ‘Global Overview’, which was researched and written by Edwin J Bernard, using data collected by Sylvie Beaumont and analysed by Tenesha Myrie.

Additional input was provided by: Gonzalo Aburto (The Sero Project), India Annamanthadoo (HIV Legal Network), Stephen Barris (Ex Aequo), Sophie Brion (International Community of Women Living with HIV), Janet Butler-McPhee (HIV Legal Network), Nyasha Chingore-Munazvo (AIDS and Rights Alliance for Southern Africa), Kenechukwu Esom (United Nations Development Programme), Elie Georges Ballan (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Alfredo González (Hondureños Contra el SIDA), Julian Hows (HIV Justice Network), Deidre Johnson (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Cécile Kazatchkine (HIV Legal Network), Svitlana Moroz (Eurasian Women’s Network on AIDS), Immaculate Owomugisha Bazare (Uganda Network on Law Ethics and HIV/AIDS), Stephen Page (Nevada HIV Modernization Coalition), Cedric Pulliam (Ending Criminalization of HIV and Overincarceration in Virginia Coalition), Florence Riako Anam (Global Network of People Living with HIV), Mianko Ramaroson (The Joint United Nations Programme on HIV/AIDS – UNAIDS), Demario Richardson (Missouri HIV Justice Coalition), Sean Strub (The Sero Project), and Alexandra Volgina (Global Network of People Living with HIV).

We would especially like to acknowledge the courage and commitment of the growing number of people living with HIV and allies around the world who are challenging laws, policies and practices that inappropriately regulate and punish people living with HIV. Without them, this report — and the victories reported herein — would not have been possible.

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

Mwayi’s Story: a short film about courage,
women’s rights, and HIV justice

Today we are delighted to share with the world a new short film, Mwayi’s Story, produced by the HIV Justice Network on behalf of HIV JUSTICE WORLDWIDE.

Mwayi’s Story is a story about courage, and about women standing up for their rights. The film is based on the story of a woman in Malawi who was prosecuted for briefly breastfeeding another woman’s baby and the subsequent successful advocacy in Malawi to prevent an HIV criminalisation statute being passed.

Ultimately, Mwayi’s Story is about HIV justice!

We wanted to produce a film that was authentic to the lived experience of an HIV criminalisation survivor but without making her go through the trauma of having to relive the experience by telling her story again.

HJN’s video, visuals and webshows consultant, Nicholas Feustel, who produced and directed the film, said: “Since this story is primarily about mothers and children, we decided to produce the film in the style of an illustrated children’s storybook. We searched for a female illustrator working in sub-Saharan Africa and found the wonderful Phathu Nembilwi of Phathu Designs.

“For our narrator, we found Upile Chisala, a storyteller from Malawi known for her short and powerful poems.”

The script by HJN’s Senior Policy Analyst, Alison Symington, was written in consultation with our Supervisory Board member, Sarai Chisala-Tempelhoff, a Malawian human rights lawyer and legal researcher with over 15 years of experience in women’s access to justice.

We also worked with our HIV JUSTICE WORLDWIDE partners, Southern Africa Litigation Centre (SALC) and AIDS and Rights Alliance for Southern Africa (ARASA), to ensure that the film was relevant to their ongoing advocacy in the region. In fact, Mwayi’s Story had its world premiere last week on Zambia’s Diamond TV, in anticipation of a verdict in a similar breastfeeding case.

The film will be shown in a number of forums over the next few months, including at AIDS 2022. It will soon be subtitled in French, Russian and Spanish, and we are also looking for partners to translate additional subtitles if they think the film can be useful in their own advocacy. If you’re interested you can get in touch with us at breastfeeding@hivjustice.net. We will send you the English subtitle file for translation. After you return the file to us, we will upload it to YouTube.

Mwayi’s Story is part of our ongoing work to end the criminalisation of women living with HIV for breastfeeding and comfort nursing, including our Breastfeeding Defence Toolkit. It is our goal to collaborate with advocates, researchers, service providers, organisations and community members around the world to raise awareness and prevent further unjust prosecutions against women living with HIV who breastfeed or comfort nurse. We are grateful to both the Elizabeth Taylor AIDS Foundation and the Robert Carr Fund for their financial support for this work, and this film.

Our Annual Report 2021
”A Key Force for Change”

Today, with the publication of our Annual Report 2021 we look back at some of the key highlights of last year, as well as look to the future. The report is published by the HIV Justice Foundation, an independent non-profit legal entity registered in the Netherlands as Stichting HIV Justice to specifically serve as the fiscal organisation for the HIV Justice Network (HJN) and other related activities.

In 2021, we were challenged yet again by the ongoing COVID-19 pandemic which continued to impede our collective ability to organise and likely contributed to a growing acceptance of punitive approaches to public health. Nevertheless, we continued to monitor global trends and developments; develop advocacy tools and resources; brought individuals and organisations together across countries and continents to share experiences, learn, and develop strategic collaboration and campaigning; and amplified the voices of HIV criminalisation survivors and collaborated closely with other social justice movements, to ensure that HIV criminalisation remains high on global, regional and national policy and advocacy agendas.

Kevin Moody, who served as Chair of the Foundation’s Supervisory Board during 2021, said:

“HJN has once again in 2021 demonstrated its ability to impact the fight against HIV criminalisation, as outlined in the Foundation’s annual report. HJN’s technical work addressed the criminalisation of mothers with HIV who breastfeed and molecular HIV surveillance, as well having contributed to UNDP’s Guidance for Prosecutors on HIV-related criminal cases, all of which provide important support for policy makers and advocates around the world. In its convening role, HJN has been able to bring together community-based experts and allies through its flagship Beyond Blame online gathering and the HIV Justice Live! web series during a period where COVID-19 continued to preclude face-to-face meetings. Executive Director, Edwin J Bernard, and his team succeeded in continuing operations while developing a new strategic plan to shape the future of its work to curb HIV criminalisation.”

HJN was a co-founder and is the co-ordinator of the HIV JUSTICE WORLDWIDE (HJWW) coalition. Much of the work undertaken by HJWW has been funded by the Robert Carr Fund for civil society networks through the HIV Justice Global Consortium. Since 2019, HJN has been the lead grantee of the Consortium of seven partners: ARASA, GNP+, the HIV Legal Network, Positive Women’s Network-USA, SALC and the Sero Project. Throughout the year, we oversaw the distribution of small grants either directly or through our Consortium partners working in Eastern Europe and Central Asia (EECA), Francophone Africa, Anglophone Africa, and Latin America and Caribbean.

Looking to the future

In June 2021, we published our 2022-26 Strategic Plan. People living with HIV remain firmly at the heart of this strategy. All of our work is designed to contribute towards an environment in which people living with HIV feel safe, empowered and able to enjoy their human rights.

As we moved towards its implementation, we focused on three key organisational development priorities: increasing diversity within our organisation; improving our reach and strengthening our communications; and mobilising resources to support and enhance our work. Primarily supported through a grant from the Robert Carr Fund, we were also fortunate to receive funding from The Elizabeth Taylor AIDS Foundation.

The new Global AIDS Strategy 2021-2026 calls on countries to adopt bold new targets to remove “societal and legal impediments to an enabling environment for HIV services”, which includes achieving a goal of fewer than 10% of countries with “punitive laws and policies”, including those that allow for HIV criminalisation. The HIV Justice Network is ready to take on the challenge to support advocates help countries achieve these targets. That’s why we were delighted to receive news in December 2021 that two separate funding applications to the Robert Carr Fund were successful, placing us on firm footing to continue our work to end HIV criminalisation and support advocates pushing for their countries to achieve the Global AIDS Strategy goals.

Richard Elliott, who was appointed as the Foundation’s Chair in March 2022 as Kevin Moody became Treasurer said:

“In just a decade, HJN has made extraordinary contributions to the growing global movement against HIV criminalisation. Indeed, it is hard to imagine a global movement as such without HJN. The important victories against injustice show that resistance is worthwhile! Guided by a new strategic plan, input from advocates and experts from around the world, and the deep expertise and vision of our Executive Director, the HIV Justice Network will continue to be a key force for change in the years ahead.”

Download our Annual Report 2021

It’s HIV Justice Network’s 10th Anniversary

Our founding document, the Oslo Declaration, was created 10 years ago this week

On February 13, 2012, a group of individuals from civil society around the world, concerned about the inappropriate and overly broad use of the criminal law to regulate and punish people living with HIV for behaviour that in any other circumstance would be considered lawful, came together in Oslo to create the Oslo Declaration on HIV Criminalisation.

The Oslo Declaration, published on the brand new hivjustice.net website on February 22, 2012, became the founding document of the HIV Justice Network (HJN). Within weeks, more than 1700 supporters from more than 115 countries had signed up to the Declaration, creating a network of diverse activists, all fighting for HIV justice.

HJN was formed due to a growing concern over increasingly punitive approaches to HIV prevention: in particular, the inappropriate use of criminal law, even though HIV criminalisation is discredited as a public health response. We have grown in size, capacity, and impact in the intervening decade thanks to our funders – the Monument Trust, the Robert Carr Fund for civil society networks, the Elizabeth Taylor AIDS Foundation and UNAIDS – our small-but-dedicated HJN team, our Supervisory Board, our Global Advisory Panel and our HIV JUSTICE WORLDWIDE partners.

Today, we collate authoritative data and information to build the evidence base against the unjust criminalisation of people living with HIV. We also raise awareness of the harms of this approach in critical arenas including among the scientific, medical, policy, advocacy, and donor communities.

Most importantly, we galvanise and nurture the global movement against HIV criminalisation, by providing an advocacy hub to bring individuals, national, regional, and global networks and organisations together to catalyse change.

Thank you to everyone who has supported the organisation on our journey so far. We couldn’t have done it without our funders and partners but, most importantly, we wouldn’t have achieved so much without the courage and commitment of the growing number of advocates around the world who are challenging laws, policies and practices that inappropriately regulate and punish people living with HIV.

Watch HIV Justice Live! which explores the history behind, and impact of, the Oslo Declaration on HIV Criminalisation. Hosted by HJN’s founder and Executive Director, Edwin J Bernard, the show, From Moment to Movement, featured some of the advocates who were behind the Oslo Declaration: Kim Fangen, Patrick Eba, Michaela Clayton, Ralf Jürgens and Susan Timberlake.

Help us support you
by completing a short survey on e-Learning and e-Training

Please complete our short survey on e-Learning and e-Training by 11th February

You’ll have seen from our first HIV Justice Newsletter of the year that we are excited about various advocacy tools and resources we are working on this year, including our new e-Learning and e-Training platform, to allow for digital organising and advocacy to continue regardless of travel and in-person meeting limitations, making these resources more accessible to more people.

The platform will be used to continue to build and galvanise the global movement to end punitive laws and policies that impact people living with HIV in all their diversity, with a specific focus on the criminalisation of HIV non-disclosure, exposure and/or transmission (HIV criminalisation).

With its accessible online written and video resources, and different types of learning and training sessions, and content in English, French, Russian, and Spanish, the platform will engage a growing community of HIV justice activists and advocates. It will provide timely and accessible education and training that focuses on understanding the issues, to help achieve progressive change in legal and policy environments for people living with HIV at national, regional, and international levels.

To help us ensure we properly achieve these objectives, we want to hear from you – to understand what you would find most useful in an e-Learning platform, and to find out more about your experiences of using e-Learning. So, could you complete this short survey (10-15 minutes) by 11 February 2022. We’d love to hear from you.

Visit https://www.surveymonkey.com/r/hivjustice to answer the survey (in English, French, Russian or Spanish) or scan the QR code below.

New Breastfeeding Defence Toolkit
launched at Beyond Blame 2021

Criminal prosecutions related to presumed HIV exposure via breastfeeding are all-too-often driven by stigma, misinformation, and the desire to protect a child from exaggerated risk. People living with HIV require a vigorous defence based on principles of justice and human rights, good public policy, and accurate science.

Which is why this week we have launched the Breastfeeding Defence Toolkit as a new section of our HIV Justice Tookit.

The Breastfeeding Defence Toolkit provides materials to support lawyers and advocates supporting people living with HIV who face criminal charges or other punitive measures for breastfeeding, chestfeeding, or comfort nursing.

Although the Breastfeeding Defence Toolkit is currently only available in English, we are working on French, Russian and Spanish versions. In addition, new resources will be added to the Toolkit as they become available.

The Breastfeeding Defence Toolkit was launched at Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE on Tuesday 30 November 2021. Watch the 10 minute segment below.

Background

In 1986, it was discovered that HIV could be transmitted from a woman to a child through  breastfeeding. Since this time, women living with HIV have borne the weight of the  responsibility of preventing HIV transmission to their offspring. This responsibility has been  used to justify surveillance, judgement, and limitations on autonomy and decision-making for  women living with HIV.

Some women living with HIV have faced criminal prosecution for exposing fetuses and/or  infants to a risk of HIV infection, especially through breastfeeding. These numbers may be small  compared to the number who have faced criminal charges with respect to HIV non-disclosure,  exposure and transmission in sexual contexts, but cases are increasing.

The HIV Justice Network  is aware of at least 13 such cases in the past decade, with a growing number of criminal prosecutions taking place  across the African continent as well as in Russia since 2018. We are also aware of several cases  that took place in North America and Europe between 2005 – 2012.

These cases include charges laid against mothers, community members and domestic  employees. Various criminal charges have been used in these cases, including failure to provide  the necessaries of life, grievous bodily harm, unlawfully doing an act likely to spread a  dangerous disease, and deliberately infecting another with HIV.

In addition to these criminal  cases, many more women have experienced punitive responses from service providers, public  health, and child welfare authorities.

Criminal prosecutions and other punitive responses to breastfeeding by women living with HIV  pose significant harms to both the accused and the child. HIV criminalisation threatens the  health and well-being of people living with HIV and jeopardises the goals of ending HIV  discrimination and, ultimately, the epidemic. Not only do punitive laws targeting people living with HIV lack a scientific evidence base they also serve as barriers to HIV prevention, treatment,  and care, and perpetuate stigma.

Infant feeding choices should not be a criminal issue. Parents should be provided with full  information to make the best choices for their families and infant feeding should be managed  through clinical support. Science supports that the best outcomes for a mother and a child  result from proper medical care, access to treatment and openness. Criminalising maternal and  child health issues generally risks worse outcomes for the infant.

UPDATE: Speakers now confirmed for #BeyondBlame2021!

REGISTER HERE

Beyond Blame, our flagship meeting for activists, human rights defenders, criminal legal system and public health system actors, healthcare professionals, researchers, and anyone else working to end HIV criminalisation, is returning for a special eve-of-World AIDS Day edition.

Following the success of last year’s Beyond Blame @ HIV2020, which was reimagined as a two-hour web show, the HIV JUSTICE WORLDWIDE coalition is delighted to announce that Beyond Blame: Challenging Criminalisation for HIV JUSTICE WORLDWIDE will take place on Tuesday, November 30, 2021, from 6-8 PM Central European Time. Check this link to find the event in your local time.

REGISTER HERE

Beyond Blame is a unique opportunity to learn why HIV criminalisation matters, as well as hear about the wide range of initiatives and strategies that have been used by activists, lawyers, networks, and organisations around the world to work towards ending the inappropriate use of criminal law to regulate and punish people living with HIV.

We will be highlighting some of the successes and challenges of the global movement to end HIV criminalisation over the past year, including work on ending the criminalisation of women living with HIV for breastfeeding, exploring whether scientific advances, such as the prevention benefit of treatment (U=U) and Molecular HIV Surveillance, help or hinder our movement and much, much more.

Beyond Blame will take place in English, with interpretation available in French, Russian and Spanish.

Follow the conversation on Twitter via #BeyondBlame2021 #HIVJustice

REGISTER HERE

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 implications” provides 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:

Take seriously and act upon community concerns about MHS.
Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
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.
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.
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 now available in four languages:

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