A Democracy Deficit in Digital Health?

Sara L. M. Davis, Kenechukwu Esom, Rico Gustav, Allan Maleche, and Mike Podmore

In 1994, when Health and Human Rights was launched by editor Jonathan Mann, it appeared-in print-in a very different world: one in which the internet had just been created, and could only be accessed through dial-up telephone lines paid for by the minute; cell phones were heavy, clunky, and unaffordable for most. Our thinking about health and human rights, formed before the digital age, must now advance to keep pace with its new risks and opportunities.

Today, new technologies are rapidly reshaping how we access health information, find health facilities, and how health care providers diagnose and treat patients. These new technologies offer exciting opportunities, but also risk rolling back the fragile gains in human rights, by sharing and commodifying our most intimate health and behavioral information (known as “surveillance capitalism”), and by leaving vulnerable communities exposed to risk of discrimination, arrest, and violence. As global health agencies rush to embrace new digital technologies, they risk undermining human rights principles (that were painstakingly embedded into, for example, the global HIV and tuberculosis response) including right to non-discrimination in access to health services, the right to privacy, and the principle of inclusive governance.

New global health digital partnerships and strategies are launching at warp speed. The World Health Assembly will consider a draft digital strategy in 2020, while GAVI and World Food Programme have already signed digital partnerships, raising difficult questions about risks of data breaches, privacy intrusions, and mis-use of the data by private sector firms. Other global health agencies are also entering new digital health partnerships with the private sector.

While the excitement is justifiable, we see real risks in the communities where digital health services are planned and implemented-in particular, for the vulnerable populations affected by HIV and TB. Laws, practices, and systemic inequalities fuel the HIV and TB epidemics. Many countries criminalize HIV transmission and the behaviors of populations most at risk: sex workers, people who inject drugs, men who have sex with men, and transgender people. Refugees and migrants also face widespread discrimination. Data that enables individuals or groups of criminalized populations to be precisely located and identified by state or non-state actors increases the risk of discrimination, arrest, and violence. Similarly, ICRC finds that metadata from mobile telephone messages could enable state or non-state actors to infer details like sleep patterns, travel routines, or frequent contacts, enabling the profiling or targeting of vulnerable groups in conflict settings.

What does “informed consent” to data-sharing mean for those with few options for accessing life-saving treatment? Whose risk is weighed against whose benefit? Who owns that data, and who may get access to it three or four partnerships down the road? Can global health agencies’ data protection policies be upheld if government actors demand access to volatile data on stigmatized or criminalized groups-especially given weak data protection laws and weaker enforcement in many countries? These questions have been highlighted by the Global Commission on HIV and the Law and the International Committee of the Red Cross, but are largely missing from the global health conversation. It is unfortunately often unclear whether or how privacy protections and risks of discrimination and targeting have been addressed and, crucially, whether affected communities have been at the center of digital strategy development, or consulted in the rollout of new tools.

Legal environments have follow-on effects for data quality. Data gathered by governments on HIV and TB is plagued with gaps, especially on marginalized populations, creating a data paradox in which official government denial of stigmatized groups contributes to lack of data about their health needs, reinforcing the lack of services. As data is being “hoovered up” in both lower- and middle-income countries and the global North to inform new technologies, a key concern should be whether feeding this gap-plagued data into algorithm-driven decisions will magnify discrimination. It could do so by prioritizing state health services for visible groups for whom there is data, and de-prioritizing the hidden and disfavored groups for whom there is none.

But there are also opportunities. In addition to potentially increasing access to services and information, new technologies could amplify the work of HIV and TB civil society organizations that have mobilized communities. Digital health strategies should include plans to empower community monitoring, enabling activists to flag corruption, stock-outs, health sector discrimination, forced sterilization, and more. Digital technologies improve the speed of information exchange, potentially enabling health agencies to course-correct in real time.

Philip Alston, the UN Special Rapporteur on extreme poverty and human rights, warns that the emergence of a “digital welfare state” may contribute to expanded surveillance and weakening national social systems, with the private sector “operat[ing] in a virtually human rights-free zone.” But it doesn’t have to be this way. For 30 years, the voices of affected communities have played an ever-more central role in governance of the HIV sector, and have insisted it is grounded in human rights law.

In the absence of effective regulation of this fast-evolving space, both big tech companies and government often defer to ‘ethical frameworks’ developed and regulated by tech companies themselves. While ethical frameworks are important, human rights standards provide clear obligations and mechanisms for states and corporations. Humanitarian agencies have also committed to ensuring new technology uses are consistent with international humanitarian law: ICRC has passed a strict biometrics policy that merits study by global health agencies. Human rights scholars must also catch up with these rapidly-emerging challenges, examining whether our standards and guidelines are fit for new digital purposes.

UN and global health finance agencies have established governance boards and advisory groups that include representation of people living with HIV and affected populations. Similarly, they should commit to ensuring human rights standards and a community voice remain at the center of governing our digital futures. Digital health strategies must be developed with the close scrutiny and active involvement of those whose lives are at stake, and with human rights commitments at their core. Expert groups drafting UN and other guidelines must include community representation, to ensure potential human rights challenges are addressed, and potential benefits maximized. That means making a commitment to explaining new technology and being accountable for its use on the ground. In the race to the digital future, we don’t have time to get this wrong.

Sara L.M. Davis, is Senior Fellow, Graduate Institute, Geneva, Switzerland. Email: sara.davis@graduateinstitute.ch

Kenechukwu Esom, is Policy Specialist, UNDP, New York, USA. Email: kenechukwu.esom@undp.org

Rico Gustav, is Executive Director, Global Network of People Living with HIV (GNP+), the Netherlands.

Allan Maleche, is Executive Director KELIN, Kenya. Email: amaleche@kelinkenya.org

Mike Podmore, is Director, STOPAIDS, UK. Email: mike@stopaids.org.uk