Genetic information can not only identify individuals but also create stigmas, issues relevant to those affected by conflicts or disasters as personal information could be used against them. In addition to the type of data collected, the study designs for genetic research are also quite complex and may not have an immediate, beneficial impact on the affected population since most are for the purpose of collecting foundational knowledge. In fact, the lack of benefit to the immediate needs of disaster survivors from genetics research is a concern noted by participants, particularly following acute emergencies. These concerns often impact perceptions and increase suspicions about genetic studies in disasters or with populations affected by disasters. While the importance of privacy and confidentiality are perennial issues (see Biological Sample Study), other ethical considerations of this methodology should include:
Consent: It is challenging to understand the technical workings of genes and genetics in a non-emergency setting, yet the instability of disasters exacerbates this challenge. There may also be language barriers, or participant languages may not have the concepts or words to describe genetics. The consent process must be robust and longitudinal. For this reason, it may be beneficial for potential subjects to participate in focus groups, interviews, or other community engagement activities prior to commencing a genetic study.
Social value: Because it collects private, identifiable information for , genetic research is susceptible to misunderstanding and mistrust and participants may question its social value. One question researchers should consider is, in places where disaster has severely impacted healthcare resources and infrastructure, can genetic research studies afford the needed professionals, or would those resources be better spent toward disaster-related care?
Sharing results and future uses: The benefit of having personal genetic results returned to participants is contested and not always well understood. Researchers should work carefully to understand the cultural implications of genetic knowledge and respect the wishes of those whom they collect data from.
Population: Researchers should consider any disparities or possible vulnerabilities in the group to be studied. Genetic research with immigrants, minorities, and IDPs from ethnic group may be challenging, not only because of the information but also because. Historical reports of pharmaceutical companies financially profiting from the genetic data of minorities has also led to research abuse and increased mistrust of genetic research.
Which of the following are features of your study?