Delivered by Alexander McClelland
Thank you for allowing me to comment today. I am a person living with HIV, a criminologist at Carleton University’s Institute of Criminology and Criminal Justice, and an advocate with the HIV Justice Network’s Global Advisory Panel.
I come to you from unceded Indigenous Algonquin territory, the city of Ottawa, the capital of Canada – which has the shameful record of being a leading country in the world for using punitive laws to criminalize people living with HIV and is also a global innovator on genomic surveillance. I’m here to speak to paragraph 53 in the thematic segment background note.
Researchers and public health practitioners are conducting genomic surveillance and research in countries – like mine - which actively criminalise HIV non-disclosure, exposure, and transmission, as well as countries which criminalize and surveil people who use drugs, people who sell or buy sex, migrants, and gender and sexual minorities.
HIV experts and advocates have raised a series of human rights concerns about the use of genomic surveillance data and technology which is being widely implemented without community consultation or oversight.
Concerns include: consent and bodily autonomy – often our blood is used for surveillance without our knowledge, counter to medical ethics; increased stigma towards targeted communities who are viewed as vectors of disease within so-called ‘clusters’ or ‘transmission risk networks’; privacy and data protections – as multiple sensitive data sources are shared for such research with limited legal oversight; whether the technology can be used to “prove” direct transmission; and as a result how such data and technology may intensify HIV criminalisation within communities who are already made to be marginalised and oppressed.
I was a co-author on the recent report from Positive Women’s Network and the HIV Justice Network - MOLECULAR HIV SURVEILLANCE: A GLOBAL REVIEW OF HUMAN RIGHTS IMPLICATIONS – where we examined over 100 academic research and NGO documents on genomic surveillance and research from around the world to examine the consequences for human rights, bodily autonomy, and dignity of people living with HIV.
Our findings call on decision makers to:
Take seriously and act upon community concerns about genomic surveillance.
Respect the bodily autonomy and integrity of people living with HIV.
Implementers of genomic surveillance must demonstrate a clear measurable benefit that outweighs the potential harms of this technology and ensures data privacy and legal protections.
Providers using genomic surveillance must implement informed consent with people living with HIV about how their blood and data are being used. People must be allowed to withdraw consent if they so wish, without fear of negative consequences to their HIV treatment and care.
Implementers of genomic surveillance must publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that genomic data is never used in criminal, civil, or immigration investigations or prosecutions.
We must guarantee that people living with HIV are at the center of decision-making on how data about our lives is used. We must help realize HIV data justice. We are people, not clusters. Thank you.
Tags: 49th PCB Meeting