Skip to main content
. Author manuscript; available in PMC: 2022 Sep 11.
Published in final edited form as: Nat Med. 2022 Jun;28(6):1116–1120. doi: 10.1038/s41591-022-01801-7

Table 2.

Challenges, risks and suggested solutions for the inclusion of forcibly displaced populations in novel technology research.

Challenges Solutions
Research funding is not equitable between vulnerable and non-vulnerable populations and does not prioritize forcibly displaced persons. There should be an increased focus on providing funding to research inclusive of vulnerable populations, including forcibly displaced persons.
Forcibly displaced populations may be hesitant to join research efforts for a multitude of reasons. Community-based participatory research approaches should be implemented in study design stages when possible. Forcibly displaced populations should be involved in the research planning process so that concerns can be adequately addressed early.22
Researchers may intentionally avoid forcibly displaced populations due to perceived difficulties in attaining research approval with these populations. Efforts should be made to incentivize research projects with forcibly displaced populations and streamline Institutional Review Board (IRB) approval processes with these groups. IRBs should include reviewers with experience in vulnerable populations research.
Technical research challenges include finding appropriate control populations, accounting for potentially low retention and adherence rates, the possibility of re-traumatization in participants, and navigating selection bias due to convenient sampling strategies. Non-forcibly displaced immigrants from similar ethnic backgrounds have been used as controls, though there are limitations to this approach. Nested case-control study designs can also be used for association analyses. Community-based approaches that improve the patients’ engagement in research will likely improve retention and adherence rates to the study procedure. Such approaches can be supplemented with innovative communication strategies, such as animation and the use of simple analogies to explain the study goals and procedure. Trauma-informed training for researchers can mitigate re-traumatization. Adopting homogenous convenience sampling strategies (i.e., to one or more sociodemographic factor(s)) can improve generalizability and accuracy of the findings.23
Risks Solutions
Forcibly displaced populations may have difficulty comprehending the informed consent process. IRBs should seek counsel from experts in conducting research with forcibly displaced or at-risk populations. Advisory boards from forcibly displaced populations should be established to guide the development of informed consent forms, the study risks and potential benefits, and the interpretation of findings.24 Language-concordant research nurses or research assistants should be trained in integrating social and clinical data with omics and digital health data. In turn, they will help in developing and implementing clear communication modalities about the research tools and findings for this population.25
Ethical standards are needed to ensure that research involving forcibly displaced persons is efficacious and practical. Standardized protocols should be developed for novel technology research, such as omics and digital tools, with forcibly displaced persons. This includes ensuring the voluntary nature of participating in such research and its dissociation from receiving any benefits that they may be otherwise eligible for as well as maximizing non-coercive benefits, by providing opportunities for participants to learn about health or settlement issues during participation in the project.
Efforts to maintain the autonomy, safety, and confidentiality of extremely vulnerable populations are imperative. The well-being and rights of forcibly displaced persons that participate in research must be protected. Sensitive data should be protected, and comprehensive security measures should be implemented. Researchers should seek Certificates of Confidentiality and receive extensive training in handling identifiable information for extremely vulnerable populations including forcibly displaced populations.

IRB, institutional review board.