We are living in a digital era. Data is considered by some the most valuable resource in the world. Every sector is looking to digital tools and artificial intelligence (AI) to better and more quickly achieve their goals. 

Digital technologies can help us make huge strides towards the SDGs, including health for all, but they also come with huge risks that cannot be ignored.

Technology is not neutral, safety is not a given and access is not equal. Such problems have led to UN human rights experts sounding the alarm on digital technologies. In many ways the digital world mirrors the same economic, social and racial inequalities that STOPAIDS is fighting today. It is even making them worse. 

For example, 2.9 billion people are still offline and being left behind in the digital transformation. Women and girls, as well as those living in rural areas, on low incomes and with less education, are particularly affected. In practice, this has led to people being denied the health services they need. 

Further, those that are online and connected are exposed to the risks associated with giving up their data, such as privacy leaks, poor management of health data or losing out on services due to algorithmic bias. People who have historically experienced marginalization and discrimination, such as people living with or affect by HIV,  are especially at risk of harm and discrimination.

Many of the problems stem from underlying economic and historical drivers. Digital innovations have been predominantly driven by profit and led by men in the private sector. This ‘data colonialism’ only reinforces the power, assets and influence of big tech companies in the global north. 

Meanwhile, poor digital literacy, a lack of a meaningful community voice in much of policy-making and a ‘great fracture’ between world powers has led to a lack of strong, binding international rules in the governance of data and digital technologies.

WHAT STOPAIDS IS FIGHTING FOR

It is essential that young people, communities and civil society are empowered to understand and have a say in policy-making that affects their digital rights. We also need global health agencies and decision-makers to put people at the centre of digital approaches. That is why we’re coordinating the global advocacy and youth mobilisation work across the Digital Rights and Health Advisory Group (DRAG). 

We are proud to be part of DRAG, alongside GNP+, KELIN and the Graduate Institute, to name a few. Together we are conducting human rights research into the rights of young women and marginalised groups in Kenya, Ghana, Vietnam, Bangladesh and Colombia, developing evidence-based policy recommendations and building an international movement of activists demanding their digital rights, drawing on our lessons, experience and networks in the HIV sector.  And, we are calling on institutions like the Global Fund, UNAIDS and the WHO to give communities a say in related policy-making and to fight for binding rules that protect our human rights in the digital era.

Youth health and rights are central to STOPAIDS’ work on digital rights. So we’re also working closely with youth organisations, including Students for Global Health, Y+ Global, Restless Development and Young Experts: Tech 4 Health. We’ve hosted digital rights trainings for young people and will continue this work in 2022, so watch this space!

Interested in learning more about this work? Please contact Tabitha Ha (tabitha@stopaids.org.uk)

Useful resources

From the Digital Rights and Health Advisory Group  

  1. Digital Health Rights initial analysis – this explores inequalities and the human rights landscape for digital health.
  2. Digital health and rights context in 3 countries: Ghana, Vietnam and Kenya
  3. A Democracy Deficit in Digital Health?’, HHR Journal (2020). By Sara L. M. Davis, Kenechukwu Esom, Rico Gustav, Allan Maleche, and Mike Podmore.
  4. Making digital tools work for young people’s health and rights: 3 key takeaways. By Tabitha Ha and Richard Dzikunu

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