Delivered by Julian Hows, on behalf of the HIV Justice Network
Thanks for the opportunity to comment. In the interests of time, I will skip the niceties except to say that I love you all, but do not agree with the retrograde positions expressed by some of you on behalf of your countries.
I speak on behalf of the HIV Justice Network. We are a global information and advocacy hub for individuals and organisations working to end the inappropriate use of the criminal law to regulate and punish people living with HIV
Of course, we agree that responses are most effective it they are data and evidence driven,
However, and I do not want to appear like the bad fairy in the movie Sleeping beauty and try to put the entire process to sleep for one hundred years, but I need to be like Jiminy Cricket in the movie Pinocchio and raise issues of conscience and ethics to inform how we move forward.
Data and evidence are double-edged swords. Though utilising and using the advances of data and related technologies offer enormous potential, they also introduce the potential for extensive harm. As someone living with HIV, a gay man, a drug user, part of the sex worker community, when harm comes knocking it will be at my door, and the doors of my friends; especially those who do not, like me, live in the enlightened land of the tulips and windmills, the Netherlands.
Within the background paper:
We especially welcome the acknowledgement in para 5 that Community-generated data are an additional pillar of HIV response information systems...
But as others have mentioned such community generated data need also to be community designed and driven and the results used to go beyond improving service provision of biomedical; interventions; often they are not. To achieve our targets, they must be designed as part of improving the quality of life of people living with HIV and other communities, and our communities need to be properly resourced and supported to be able to do this.
Such data gathered also needs to be free from being sequestered by governments or others such as law enforcement, immigration services – and robust mechanisms need to be in place ensure this
There are many instances, which I am sure all of us in this room have examples of, where individual or aggregated data has been ‘leaked,’ data use guidelines and legislation have been breached, information obtained for one purpose has been used for another: sometimes for the good but very often not.
So, as we go forward are we really listing enough to concerns, is achieving equity (even if not equality) part of our vision? Are we seriously thinking through how we are protecting privacy? …and yes those fundamental principles (regrettably still seen as ‘dirty words’ by some in this room) such as human rights, bodily autonomy, and gender sensitivity need to be a full and valued part of this discourse, and the communities who are sometimes not even acknowledged as being communities or their very identities making them subject to discrimination, arrest, imprisonment, or worse, need to be part of that discussion.
For unless we address these issues, these advances will just add to the perpetuation of the patriarchy; and we know the patriarchy hinders rather than helps our work, and indeed human advancement.
Thank you for listening
Tags: 49th PCB Meeting