Forcibly displaced persons, such as refugees, are at an increased risk of physical and mental health conditions and would therefore benefit from novel healthcare technologies, research on which can be conducted under an ethical framework.
According to the United Nations Refugee Agency, persecution, conflict, violence and human rights violations have resulted in the forced displacement of more than 82 million persons worldwide in 2020 — a record-breaking figure. The migration journey exposes displaced populations to multiple traumas, such as gender-based violence, detention, poor sanitation, infectious diseases and family separation1,2. After reaching their destination, many forcibly displaced people experience loss of social status and discrimination and face barriers to healthcare, employment, education and housing3. Owing to the compounding effects of traumas experienced before, during and after migration, forcibly displaced populations are at risk of suffering from chronic psychophysical conditions4.
The use of novel technologies in this population, in addition to routine clinical care, provides an opportunity to reduce health disparities for forcibly displaced individuals. New technologies in healthcare are rapidly expanding, from three-dimensional bioprinting of tissues and organs to onsite portable sequencing to detect disease. Two novel technologies that are especially relevant to displaced persons, which have revolutionized healthcare for the general population in high-income countries, are omics and digital healthcare technology. Each of these can benefit forcibly displaced populations if applied appropriately and responsibly.
Omics and digital technology
Advances in omics technology (for example, genomics, epigenomics, transcriptomics, proteomics, metabolomics and microbiomics) improve knowledge of disease progression on a molecular level and have contributed to the development of targeted therapeutics and preventative measures. Cancer therapeutics include microbiome profiling and manipulation through designer probiotics, diet and lifestyle changes to improve the efficacy of cancer immunotherapy5. The gut microbiome influences autoimmune disorders, mental health, inflammatory bowel disease, diabetes, obesity and hypertension. Omics-based health analyses have become mainstream in some parts of the world, with the emergence of direct-to-consumer testing kits, such as 23andMe, EpigenCare and Thryve. These products inform users about their risk for diseases and food intolerances, provide an analysis of the composition of their gut microbiome, and offer recommendations for lifestyle changes to attain desired health outcomes.
Digital technology is ubiquitous in clinical settings. Telehealth, via web or smartphone apps, is used for a variety of purposes, including obtaining informed consent for research, streamlining the management of patient care and tracking medical conditions remotely using synchronized sensors6. In addition, advanced computational techniques such as artificial intelligence are being used to improve the accuracy and predictive potential of complex multilevel data, including electronic medical records, environmental exposures and clinical and biological profiles. These techniques enable accurate diagnoses, the prediction of predispositions to illnesses and the design of highly effective drugs in short timeframes7.
Tailored healthcare plans
Forcibly displaced persons suffer from multiple barriers to healthcare in their host country and experience unique stressors that are associated with poor health outcomes4. While these individuals may benefit from healthcare technologies, such as omics tools and digital tools, such healthcare advances are not readily accessible to this population.
Improving the participation of forcibly displaced persons in omics and digital healthcare research has significant potential to improve the identification of people at higher risk for developing mental health, communicable and non-communicable disease in a high-throughput manner. These technologies can also promote cost-effective preventative measures, and improve the accuracy of digital phenotypes and omics biomarkers of disease. Collectively, this approach can guide the curation of evidence-based, tailor-made healthcare plans for displaced persons (Fig. 1).
Integrating environmental risk factors, such as stress associated with family separation or immigration detention, with other omics profiling can provide an improved understanding of the relationship between environment and physiology8. Longitudinal cohort studies with omics profiling coupled with a detailed survey of the exposome (that is, the timing, duration and intensity of adverse lifetime exposures) enable the identification of temporal molecular changes that precede the emergence of disease. This methodology has previously been utilized successfully. For example, researchers employed prospective methylation9 and metabolite10 biomarker analysis and correctly predicted all individuals from the general population who developed cerebro-cardiovascular disease. Similar methods could be utilized for the screening of displaced populations, who have limited access to specialists and primary care services. Such high-throughput screening methods are necessary to guide precise, preventative medicine on both an individual and population level (Fig. 1).
In forcibly displaced populations, digital health technology can reduce communication and transportation barriers, provide critical, otherwise inaccessible, information about routine screening and available healthcare resources11, and facilitate the surveillance of exposures8. Such populations suffer from higher risks for pregnancy complications, mental illness and cardiovascular disease. Digital tools have been shown to improve health outcomes for the general population12,13,14. Those tools should be tailored for displaced populations and evaluated through observational and randomized study designs. Identifying specific resettlement risk factors that are associated with suboptimal omics and digital profiles can suggest disease predisposition and guide clinical care. For example, customized probiotics could be prescribed for individuals with microbial dysbiosis that predisposes them to diabetes. A digital approach could also improve adherence by guiding people on how to take the supplement under remote observation.
Data from these studies can also influence policy. Epigenetic profiling could show predisposition to cardiovascular disease in individuals experiencing forced family separation. This information would suggest that immigration policies may result in a permanent, and potentially transgenerational, impact on the health of such immigrants.
Logistical and ethical challenges
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 tools18. Moreover, 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 comprehensive and accessible healthcare system19.
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.
Care must be taken when including forcibly displaced populations in research involving novel technologies. The World Medical Association’s Declaration of Helsinki notes that: “Medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group…[and] this group should stand to benefit from the knowledge, practices, or interventions that result from the research.” As described above, novel technology research is indeed justified in displaced persons, and they deserve access to the benefits of this cutting-edge and individualized technology.
The World Medical Association also notes that: “Some research populations are particularly vulnerable and need special protection. These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence.” In the context of novel technologies, this issue is perhaps compounded by the difficulty of communicating complex results and interpreting complicated statistical risks for potential future diseases to patients. Health privacy challenges associated with digital technology are inherent to all patients; however, breaches in the privacy of this digital information have disproportionate impact for individuals involved in immigration or resettlement applications. Digital data are immortal and such information is valuable and at risk of being bought and sold commercially. These data may also be identifiable and difficult to keep anonymous. Medical research involving extremely vulnerable populations must clearly communicate such risks thoroughly and clearly to participants while striving to ensure that the likelihood of such negative outcomes is minimized.
Community-based participatory research
One approach to improve the accessibility of clinical research on novel technologies is through community-based healthcare models such as the European Union’s Mig-HealthCare. Involving representatives from forcibly displaced populations in the research design will improve recruitment, retention, adherence and success of the intended research by reducing communication and cultural barriers20. This approach can promote the participation of these populations in national and state longitudinal cohort survey studies (for example, the National Health and Nutrition Examination Survey and the NYC Social Determinants of Health survey).
Such tools should also collect information regarding immigration status rather than a generic data point of ‘foreign born’. This will enable the evaluation of social determinants of health that are specific to this population. Another approach is to highlight the healthcare contributions of forcibly displaced physicians and researchers to promote public engagement with advocacy groups21. Table 2 summarizes the challenges and risks, as well as potential solutions to include forcibly displaced persons in novel technology research.
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Research was supported by the National Institute Of Neurological Disorders and Stroke of the National Institutes of Health (NIH) under award number K23NS116114. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
The authors declare no conflicts of interest.
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Taki, F., Lurie, J. & Kaur, G. An ethical plan for including forcibly displaced persons in omics and digital technology research. Nat Med 28, 1116–1120 (2022). https://doi.org/10.1038/s41591-022-01801-7