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Privacy International’s submission to the UN Special Rapporteur on the right to health

Privacy International’s submitted its input to the UN Special Rapporteur on the right to health for her forthcoming thematic report to the Human Rights Council on the theme of: “Digital innovation, technologies and the right to health”.

KEY ADVOCACY POINTS

  • PI’s submission addresses our ongoing concerns associated with the introduction of digital technologies in the health sector.
  • There is a need to promote and advocate for a comprehensive human rights-based approach in the design and deployment of digital health initiative.

PI welcomes the opportunity to engage once again with the mandate by submitting comments, evidence, and recommendations to the UN Special Rapporteur on the right to health, Ms. Tlaleng Mofokeng. We hope that our input will contribute to the forthcoming report, “Digital innovation, technologies and the right to health”.

Technology has contributed significantly to the planning and delivery of health information, services and care. We have seen the use of data and technology across the healthcare sector from health apps, electronic medical records, to smart supply-chain management, the use of drones for the delivery of medication, and nascent technology on automated diagnostics.

The introduction of digital technologies in the health sector have been portrayed as “a critical solution to challenges and gaps in the delivery of quality health care and essential to achieving the Sustainable Development Goals.” The WHO Global Strategy on Digital Health 2020 – 2025 presents its vision of digital health technologies “that allow people to manage their health more effectively, improve caregiver-patient communication and monitor the impact of policies on population health.”

We agree that digital technologies can potentially improve the delivery of health information, services and care. However, before the inception of any technology-assisted initiatives, there need to be open, inclusive decision-making processes and human rights assessments as to whether to deploy them in the first place in a particular setting or for a particular purpose. Once this first step has been concluded, and the deployment of such technologies is justified, then safeguards and due process guarantees need to be considered in order to identify and mitigate risks. Otherwise, the same programmes that are intended to facilitate access will amplify pre-existing shortcomings and injustice.

This submission is based on the work we have done as well as our Network of partners as we’ve monitored and responded to developments associated with the use of data and technology in the health care sector by governments and companies.

ATTACHMENTS

Privacy International – Submission to UNSR on right to health – Digital innovation, technologies and the right to health, November 2022.pdf


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Demanding identity systems on our terms

There is a growing push towards identity systems around the world – leading to some of the world’s largest biometric databases, as well as other technologies that can be used to track and profile individuals and communities.

There is a growing push towards identity systems around the world. There is a growth in both the requirement for us to identify ourselves and the development of identity systems to do so. This has led to some of the world’s largest biometric databases, as well as other technologies that can be used to track and profile individuals and communities. Despite this growth, the challenge to the autonomy and dignity of individuals that come from identity systems is rarely fully addressed. There is a need to understand the lived reality of those who both have and do not have access to these systems, to understand their true impact.

What is the problem

More and more states are pushing for identity systems – often involving giant biometric databases of almost the entire population. These systems are supposed to solve a multitude of problems, from security and fraud-prevention, to meeting the Know Your Customer requirements of financial institutions. However, the challenges of these systems have only just begun to be addressed.

Identity systems create risks for those who have access to an ID, as well as those who don’t. These systems can exclude: for all the claims fo universality, there will be some people who do not have access to an ID, or those who cannot use their ID, and are denied access to goods and services. ID systems can exploit: they link together diverse sets of information about an individual, and allow tracking and profiling. ID systems can surveil: giving the state and private sector a 360-degree view of the person. All three of these are made worse by function creep – the spread of an identity system to more and more aspects of people’s lives.

What is the solution

The first step is recognising that identification systems are not the silver bullet for society’s ills. The creation of identification systems have begun to be seen as an end in themselves, rather than as a tool for achieving other socially-desirable goals. The notion that there must be a ‘foundational’ ID system, lying beneath all an individual’s interactions with the state, needs to be challenged. The only way that a system can be legitimate is through its purpose. That purpose must be reflected in the design of a system. The danger is that the world is defaulting to biometric systems with unique identifiers, which leaves the systems open to abuse and causing harm. 

One of the most important solutions is to find ways of removing ID requirements. At the very least, having one single identification system necessary for all purposes must be challenged.  When a system is to be introduced, we need a proper legal and regulatory framework in place, including a strong data protection regime. But this is not a enough. The fact that ID touches on so many aspects of people’s lives means that the protections must be equally as broad: from the financial sector to the rights of trans people.  It’s also essential to limit function creep as much as possible, through legal and technological means.  Finally, we need more transparency in what is often a murky world of back-room deals between governments and multinational companies.

What PI is doing

Privacy International is working with a global network of partners to critically engage with national, state-provided identification systems, research their impacts, and to advocate for change.

We are engaging with international actors who promote identity systems, including leading funders in this field and international institutions, with the goal of creating a more positive vision for the development of identification systems around the globe.

We are documenting and exposing the companies involved in providing tech solutions to governments and other third parties with the aim of creating a future free from intrusive technologies.

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