Research Involving an Undocumented Population: Understanding the Challenges

I am a researcher working in an inner-city neighborhood serving a disadvantaged population. As such, I found the session “Navigating uncertainty: Research with Undocumented Immigrants” at the 2018 Advancing Ethical Research Conference quite relevant to my practice. This presentation helped me to understand the vulnerability of undocumented individuals involved in research. A person’s documentation status may be a risk factor for health disparities; however, undocumented individuals should not be automatically excluded from research.

The presentation provided an ethical framework on how to maintain the balance between ethical and methodological quandaries. From the perspective of the IRB, research studies involving undocumented individuals should be reviewed by the full board. An exempt review may be permitted if the participants remain anonymous and cannot be re-identified in any way. In addition, the sample size should be adequate to mask the identity of participants. I also learned about an important Center for the Health Assessment of Mothers and Children of Salinas (CHAMACOS) research project, which assessed the influence of environmental health exposures on undocumented persons during pregnancy and childhood. It highlighted how to determine the effects of pesticides on neural development and behavior, respiratory symptoms, obesity, puberty, and other health-related issues.

This presentation also addressed some of the challenges of conducting research with undocumented immigrants, in the current sociopolitical climate. These included ethical challenges when enrolling immigrants eligible for Deferred Action for Childhood Arrivals (DACA). The DACA program has allowed individuals who were brought to the United States illegally as children to receive a renewable two-year period of deferred action from deportation. It has therefore temporarily protected qualified youth from deportation. However, the implementation of this policy may vary from state to state. Hostile policies in one state may spread, resulting in spillover effects toward individuals residing in other states.

In the current political climate, and given growing anti-immigration sentiments, it is important to consider that the possibility of publication of research involving undocumented populations may increases fear of exposure to authorities among these subjects. Some research may not be performed or published because of the concern of both increased stigmatization and vulnerability. However, one must also determine what type of research might be important and which may help improve the health of members of this vulnerable population. The key is to find the appropriate balance between the benefit and possible harm. The primary goal is not only to provide care for patients regardless of their backgrounds, but also to improve their overall health status. Investigators should consider both of these responsibilities to the participants whom they study.

From a research perspective, undocumented participants have rights similar to those members of the general population at large. They should not be exploited and unduly coerced to participate in research. Informed consent should be required for their participation and it should be written in their native language. They should have the right to withdraw their permission and their data expunged at any time. This should be true especially if it is a qualitative study or quantitative with identifiers. Also, an oversight mechanism should be in place to provide protection to these individuals. An assurance for confidentiality and protection may improve their participation. I believe education about legal and safety concerns can help to improve research engagement with such undocumented populations. In this way, undocumented populations can receive appropriate representation and equal benefits from many different types of research approaches.

Muhammad Waseem, MD, MS, CIP, CPI, CCRP, is currently Professor of Emergency Medicine in Clinical Pediatrics at Weill Cornell Medical College, New York. He completed a residency in Pediatrics and a fellowship in Pediatric Emergency Medicine. He also holds Master’s degrees in Clinical Investigation and Epidemiology & Health Services Research from Cornell University, New York. He serves as the Research Director for the Department of Emergency Medicine and Vice chair for the IRB at Lincoln Medical Center Bronx, New York.

His special interests are ethical issues involving children and protection of vulnerable populations. He addresses these interests via his work in the pediatric emergency department as an investigator and educator. He has been serving an under-represented population in an urban community for over 20 years.

Members of PRIM&R’s Blog Squad and other guest contributors are valued members of our community willing to share their insights. The views expressed in their posts do not necessarily reflect those of PRIM&R or its employees.

Save the date for PRIM&R’s 2019 Advancing Ethical Research Conference (and Social, Behavioral, and Educational Research Conference) taking place this year in Boston, MA, November 17-20.