When data is a matter of life and death

A young person wearing a blue and orange sweater stares directly at the camera and appears to be walking on a street.

Lifeline Youth Empowerment Director Eric Ndawula (them/them) on the streets of Kampala in 2022. Credit: James Newborn Mwesigwa.

Uganda’s legislature recently passed some of the harshest anti-LGBTQ legislation in the world. The bill proposes draconian sentences, including 20 years in prison for “promotion of homosexuality” and the death penalty for some acts that fall under a broad definition of “aggravated homosexuality.”

The bill is likely to become law. Last week, Uganda’s president sent the legislation back to Parliament for “strengthening,” expressing support for the bill’s harshest elements. 

Homosexuality was already illegal in Uganda, but the situation in recent weeks has changed “as the bill’s passage sent homophobic abuse into overdrive, unleashing a wave of arrests, evictions, denunciations by family members and mob attacks,” according to news reports.

In this context, identifying as LGBTQ is dangerous. And data on LGBTQ Ugandans, collected by governments, NGOs, and others before this legislation passed, is now a liability. 

As Uganda weighs some of the harshest punishments for LGBTQ people and advocates in the world, this week we’re revisiting one queer Ugandan activist’s story about data. 

Eric Ndawula (they/them) is the executive director of Lifeline Youth Empowerment Center, a non-profit that promotes data-driven interventions to fight injustice and inequality for gay, bisexual, and queer young men in Kampala. Eric told the Data Values campaign last year that queer people must be willing to tell their stories and demand that governments protect them and respond to their needs. 

So we checked in with Eric again this week to find out whether recent changes in Uganda’s political context meant that visibility for queer people was now too great a risk. Eric continues to advocate for LGBTQ Ugandans, explaining that the needs for visibility and protection have only increased as the context has changed.

Even in extreme circumstances, there’s an argument for collecting data. 

Interventions to protect the health and safety of marginalized communities require data that identifies people in need of services. In order to provide life-saving medication, for example, Eric says people may have to identify themselves to health providers. To apply for refugee or asylum programs, people may have to identify themselves as members of a protected group. But there’s a caveat. 

The burden lies on individuals to weigh the costs and benefits of identifying themselves in data.

When sharing your identity means putting your personal safety and that of others at risk, Eric says the burden falls on individuals to carefully consider who they are giving their data to and how it could be used against them. Giving your personal information to the police, Eric says, is not the same as providing that information to health officials responsible for doling out life-saving medical interventions. 

Organizations that collect data have a duty to protect people. 

As Ugandan lawmakers seek to codify LGBTQ discrimination, organizations that collect data have a responsibility to do so in ways that protect people and make the case for protecting them. 

For data-focused development practitioners and organizations, the message is clear: Political contexts in countries can change in an instant. We saw this during the U.S. withdrawal from Afghanistan where data-focused organizations scurried to delete personal information that the Taliban could access. At the time, Data Values Digest co-founder and Development Gateway CEO Josh Powell wrote that “the global data community needs to listen to this wakeup call and finally confront the tradeoffs and risks inherent to collecting, storing, and sharing data in sensitive contexts. These events should lead us to question our assumptions about what data should be collected and stored in the first place and what protocols should exist to govern and protect that data, including against worst-case scenarios of breach or seizure.“

In Uganda, Eric’s been working with Data4Change, a UK-based non-profit, to publicize data about violence against LGBTQ Ugandans. Eric is emphatic about the lengths to which the project has gone to both completely erase all personally identifying information from the dataset—to protect survivors from identification and to avoid re-traumatizing them by keeping them out of the spotlight. The need to raise awareness about the increased risks that LGTBQ Ugandans face of physical and sexual assault and violence means it is worth collecting this data, Eric says, but the project’s organizers have gone out of their way to make anonymized data publicly available and to ensure people are protected. 

People like Eric who are part of communities facing marginalization and have first-hand knowledge and experience of events on the ground must be part of the decision-making processes around how data is collected, used, shared, and published. Because of Eric’s first-hand experience with sexual assault, they were aware of the damage that becoming visible can cause to people who have faced such acts of violence. Eric’s own experience led the project to place a high value on protecting people’s data, precautions that foresaw what no one at the time predicted: That identifying as LGBTQ in data would become a life-threatening choice in 2023 for Ugandans.

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