Call for Papers - The co-production of children’s health data through buzzwords: The problematic relationship between Safeguarding and consumer genomics

The co-production of children’s health data through buzzwords: The problematic relationship between Safeguarding and consumer genomics

Submitted by Kristin Bergtora Sandvik
For panel Taking ideology out of humanitarianism? The everyday, corporate interests and the politics of global solidarity

(With Jasmine-Kim Westendorf)
Contemporary development and humanitarian policy put significant emphasis on the importance of data – including the importance of registering the identity and health data of children – to provide citizenship, health, education, nutrition and protection. In recent years, digital data, identity and rights have become closely interwoven. While initially assumed to be inherently progressive, a more critical perspective on surveillance, digital harm and cybersecurity have become prominent in the discussion. The most difficult challenges and dilemmas converge in the field of health data.

In the wake of a number of high-profile sex abuse scandals in recent years, the humanitarian sector currently finds itself facing the urgent need to ‘deal with’ the problem of aid workers perpetrating sexual exploitation and abuse in peace and humanitarian operations. This ‘doing’ has been labelled ‘safeguarding’, which has emerged as a prominent contemporary buzzword in the global humanitarian sector and is driving significant policy work related to the interactions between aid workers and the communities they serve. In parallel, the digital transformation of aid space is unfolding in tandem with a different phenomenon: the globalization of consumer genomics: a problematic development with unforeseen ethical consequences and no form of international/global oversight.

To reflect on how health data is now co-produced through buzzwords and the availability of market based solutions to harvest intimate data, this paper present an empirical case study detailing efforts to use DNA testing of children in aid spaces to fulfill safeguarding obligations, ostensibly by way of identifying and penalizing Aid worker genetic fathers. We pay particular attention to the type of solutionism at play in the technological imaginary of consumer genomics as an appropriate mode of ‘catching’ sexual predators among aid workers, as well as to the political interests in getting safeguarding ‘implemented’ as quickly (and simply) as possible.

The paper is comprised of three sections. The first section sets the stage for the case study by introducing the technological approach and issues inherent to it. It provides clarification on key concepts (genealogical vs genetic ancestry, and genetic similarity), scientific challenges (technological fragility and reliability), and ethical and legal problems in consumer genomics. It then provides an overview of the use of DNA in refugee/migration and humanitarian contexts, including testing for biological relationships, ancestry and identity and the type of problems emerging. Finally, this section briefly outlines key issues with respect to children’s digital bodies, and the emergent corpus of ethical and legal norms regulating the specific area of children’s health data.

The second section briefly tracks the rise of the safeguarding agenda and develops a case study of a recent pilot project (InterSEC) that uses children’s DNA to ‘find’ foreign fathers who may be aid workers, and to pursue accountability and restitution directly with them.

The third section unpacks a set of legal (sensitive data, privacy, data protection, field site jurisdiction, criminalization) and ethical issues (self-determination, data justice, surveillance, power, neo-colonialism) related to this approach to safeguarding.

We conclude by reflecting on the likelihood that this ‘solution’ is not actually going to help prevent or address sexual misconduct by aid workers, and argue that it is in fact likely to cause harm to those involved, and usurp work that will be more effective at preventing and ensuring accountability for SEA.

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