Migration represents one of the most significant life changes an individual or family can endure. According to a 2014 Pew Research Center report, an estimated 11.3 million undocumented immigrants reside in the United States. Approximately 2.5 million of those are children or adolescents that attend US schools. In addition to low or limited English proficiency, immigrants and their children experience higher poverty rates and lower levels of parental education. The migration experience dramatically reshapes the lives of immigrant children. Their legal status makes young undocumented immigrants vulnerable to social exploitation, deportation, and employer extortion. An undocumented youth’s access to higher education is also impacted by their legal status, as they are frequently financially vulnerable, which may contribute to low graduation rates.
The lived experiences of immigrants, and undocumented immigrants particularly, are of increasing interest for scholars. Some researchers are reporting on the civic actions of young immigrants, their collaborative practices, and educational strategies. Scholars have also presented insights into how undocumented immigrant families and their children celebrate accomplishments and persist despite numerous obstacles. In short, undocumented immigrants are resilient, determined, and maintain an active civic presence.
Despite their significant importance in society and communities, there is a scarcity of research on the undocumented immigrant population. In addition, only a handful of studies address the social and emotional concerns of undocumented immigrants and students.
At the 2018 Advancing Ethical Research Conference, panelists Gene Gloeckner, PhD; Elizabeth Jach, MA; and Colleen Kohashi, MA, CIP, presented ways to ethically and sensitively conduct research with undocumented immigrants.
The conference panelists proposed strategies for IRB administrators who review research with undocumented immigrants and how to encourage researchers to share best practices and experiences when working with undocumented immigrants.
No specific regulations exist to guide researchers on how to work with undocumented immigrants, refugees, and other individuals with similar vulnerabilities. Political and social climates, changing environments, and social pressures can also impact regulations protecting individuals with substantial vulnerabilities. However, researchers can rely on the Belmont Report principles: the Belmont Report specifies three guiding ethical principles that inform the work of IRB administrators—respect for persons, beneficence, and justice.
- Respect for Persons: People are autonomous decision-makers. For persons incapable of such self-determination additional protections should apply.
- Beneficence: Maximize possible benefits and minimize possible harms.
- Justice: Who ought to receive the benefits of research and bear its burdens? To each person: (a) an equal share, (b) according to individual need, (c) according to individual effort, (d) according to societal contribution, and (e) according to merit.
During the conferences, the panelists encouraged IRB administrators to consider the Belmont principles and guide researchers on the unique vulnerabilities of undocumented immigrant populations. Below is a summary of the presentation and my personal reflections:
- Avoid direct immigrant status questioning. Specifically, researchers should avoid asking undocumented immigrants questions about their (or their family’s) status in the country. Further, the researcher should avoid directly asking the individual questions about their social networks and immigration experiences.
- Protecting the confidentiality of individuals with substantial vulnerabilities is of utmost importance. Researchers may also explore additional precautions to protect confidentiality for vulnerable populations through a “Certificate of Confidentiality” (COC) administered by the National Institutes of Health (NIH). A COC is designed to protect the privacy of research subjects by protecting investigators and institutions from being compelled to release information that could be used to identify research participants. Researchers should remain diligent and explore options that are best suited for their own research—specifically because it is still unclear whether undocumented immigrants are fully protected under a COC.
- Balance study activities with the needs of individuals with substantial vulnerabilities. Researchers should feel compelled to think about their study activities and the potential risks and benefits a research participant may experience. For example, focus group sessions may enable individuals to connect with others who share similarities. However, in a focus group setting a researcher can only recommend others remain confidential but cannot guarantee it.
- Be diligent with data storage, transfer, and security. Researchers should consider using digital voice recorders with file encryption and encrypted hard drives for storing data. Researchers should consult with their institution’s computer services department and ensure their computers have antimalware protections, automatic software updates, and computer passwords are changed every six weeks. For paper-based data, researchers should securely lock drawers, file cabinets, and offices where the data is stored.
- Create a safe, coercion-free environment for the recruitment and consenting process. Informed consent is a continuous process of communication between the researcher and participant. Participants should receive research-related information from researchers before, during, and after they have enrolled in a study.
- Researchers may consider employing a waiver of signed consent for participants. Researchers can request from their IRB a waiver to signed consent by indicating that signed consent forms might pose risks to participants by linking the participants’ signed names with a formalized document.
- Diverse immigrant families in the United States vary in migration choices, family dynamics, ethnic identities, languages spoken, religions, etc. Researchers should understand the cultural contexts influencing diverse immigrant populations, including the international, historical, social, political, and cultural context of these communities.
- Status and power differentials between researchers and potential immigrant participants exist. Highly educated, often multi-lingual researchers may be intimidating to individuals with substantial vulnerabilities. Researchers should prioritize trust with their study participants and articulate sensitivity when engaging with them.
- Researchers must meticulously evaluate the linguistic translation of all study-related materials including instruments and recruitment materials used in their research designs to ensure equivalence across language and dialect. Researchers should consider the cultural, contextual, and social translation of their study materials as they interact within the study site and surrounding community.
- Study related materials should be clear and understandable for the participants to comprehend their involvement in research and take into account the participant’s education level and sociocultural contexts. Researchers must explain study procedures to individuals with little to no research experience in a way that is protective of the population.
- Tailor study-related materials to the needs and wants of the participant. For example, researchers may consider a paper-based (mail-in) survey option instead of assuming that all participants will have computers or web-based access.
- Word choice matters when engaging with vulnerable populations. Shifting words from “investigator,” to “researcher,” could ease tensions for the research participant. Researchers should also use first person language when interacting with immigrant populations and avoid references to “illegal.”
Immigrants and their children are motivated to excel and strive to pursue opportunities to enrich their lives and their communities. Researchers can protect their confidentiality while also highlighting the authenticity of their lived experiences as immigrants. Research compliance administrators can support researchers by offering guidance on working with diverse or vulnerable populations and encouraging them to interact in contextually and culturally appropriate ways.
Myra Luna-Lucero, EdD, is a Research Compliance Manager at the Teacher’s College of Columbia University. As a researcher and teacher, people are her highest priority and she instinctively communicates personal concern with others. She is an adept communicator who thrives on face-to-face interactions with a diverse body of students, faculty, and staff. She brings these qualities to her work to empower others to make informed decisions and reach their goals. She encourages researchers to ponder the roles they might play in the alleviation of the troubling inequities that continue to shape our world. She guides researchers on how to treat everyone as autonomous decision-makers who possess unique opinions. I present campus workshops on the importance of ethics, confidentiality, and protecting vulnerable populations. She meets individually with researchers to strategize ways to protect human subjects and do good work in the world.
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.