An ethical plan for including forcibly displaced persons in omics and digital technology research

At the time of writing, only 112 out of 383,110 registered clinical studies included forcibly displaced populations; only 1 of 4,012 asthma and 34 of 7,754 depression studies included this population. None of the 948 epigenetic studies or the 2,464 microbiome studies, and only 2 of the 8,275 digital clinical trials included forcibly displaced populations. This is not surprising given the underrepresentation of displaced populations in health-related investigations due to research challenges, combined with limitations in the design of research in general.

Novel technology research with forcibly displaced persons is associated with logistical and ethical challenges and is also influenced by the socio-political environment. As with any research in this population, access is challenging, particularly in refugee camps. Additionally, the majority of forcibly displaced persons (>80%) reside in low- and middle-income countries and consequently have limited access to novel technologies.

Digital healthcare is also lagging in low- and middle-income countries due to structural barriers including the lack of fifth-generation (5G) telecommunication networks, minimal infrastructure for the Internet of Things, and the absence of basic services such as constant supply of electrical power. Many displaced persons have not permanently resettled and are at the mercy of immigration policies in their temporary countries of residence. As a result, some individuals might be hesitant or unwilling to participate in novel technology research due to privacy concerns related to their legal status . Moreover, the socio-political environment can influence priority research areas. Less than 10% of funding spent on research focuses on diseases that afflict 90% of the world’s population15. Medical conditions such as tuberculosis, malaria, diarrhea and pneumonia, which account for more than 20% of the world’s health problems and are more common in underserved communities, received less than 1% of the world’s total healthcare research funding16. Similar is the inequity in distribution of effective and life-saving SARS-CoV-2 vaccines to low-income countries and vulnerable groups17.

Public health technology research is rarely configured to serve forcibly displaced populations, as has been made apparent by the COVID-19 pandemic. Research projects attempting to collect data on the spread of the virus remotely have disproportionately excluded individuals who live in overcrowded spaces that lack privacy , who experience mobility restrictions or lack internet access, and are unfamiliar with using, or lack autonomy over, digital tools18Moreover, omics and digital technology research with forcibly displaced populations has not been made scalable or sustainable. Omics-based approaches have been used to track antibiotic resistance and outbreaks of infectious disease and to identify determinants of metabolic disease and mental health in vulnerable groups ( Table 1). However, this work is not reproduced in multiple settings and is not incorporated in a unified portal, such as the Migration Data Portal (https://www.migrationdataportal.org/), which allows meta-analyses or integrated analyses with exposomics data to be conducted. Similarly, although some digital tools have been designed to manage diseases, track vaccination, train healthcare providers in trauma-informed care, mitigate communication barriers, improve antenatal care and treat mental health disorders (Table 1), the majority of these tools have not been evaluated or maintained, are focused on specific medical conditions and are not integrated into a comprehensi ve and accessible healthcare system19.

Table 1 Existing omics and digital tools studies with forcibly displaced populations

Strides are being made in the safe and ethical use of novel technologies research in other vulnerable populations such as children, pregnant women and people with HIV. However, forcibly displaced populations continue to be excluded from this promising research. Rather than excluding this group entirely, strategies learned from prior efforts with other vulnerable communities should be harnessed and utilized. Fear of harm should not be a barrier to progress.

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