Ethical Research with Individuals and Groups Who Have Been Historically Excluded
by Nathan Durdella
Dr. Nathan Durdella was a Mentor in Residence on Methodspace in March, 2022. See his previous post: “Relationally Approaching Fieldwork: Using Indigenous Methodologies as Ethical Practices in the Context of Human Participant Research.” He is the author of the new book Conducting Research with Human Participants, as well as Qualitative Dissertation Methodology. With the code MSPACEQ322 you receive a 20% discount when you order the book from SAGE. Valid through September 30.
How do you ethically approach individuals or groups who have been systematically excluded from economic and/or economic participation? Further, how do human research participant regulations inform what you do in the field? These are common questions that may have implications for your work with campus IRBs or ethics review boards and certainly your research fieldwork. When we consider economic vulnerability, we mean individuals who tend to not be able to meet their daily needs and live in precarious personal or familial situations, In fact, folks in these circumstances tend to struggle to afford and pay for essentials like food, housing, utilities, etc. and may experience food or housing insecurity, sometimes requiring public services and social support services. In many cases, these folks are either temporarily or long-term high historically underserved or under-resourced and may meet federal and/or state income guidelines at the poverty level.
A guidebook students and faculty can use to navigate the IRB or ethics review process.
With individuals who are considered “educationally disadvantaged” (again, a regulatory term), formal educational levels tend to follow a pattern of incomplete elementary or secondary schooling and stop out at a grade level below degree/diploma completion. These stop-out patterns where students are not retained and do not complete may be attributed to low-income levels/socioeconomic background, migration patterns, neurodiversity, neglect or abuse, and more. While not all individuals who complete less than elementary school, junior high school, and/or high school may be classified as educationally disadvantaged, as a group, folks who are classified as either economically or educationally disadvantaged tend to be on the margins in society. In general, individuals in this position may be subject to an impersonal, dehumanizing neoliberal system of economic disparities and a related sociopolitical system of racial, gender, immigrant, and/or ability oppression—which may disrupt educational opportunities and prevent school or program completion.
Structural barriers and deficiencies, rather than personal ones, generally account for individuals who are classified as economically or educationally disadvantaged. Indeed, exploitative systems of capital and institutional forms of oppression—including chronic unemployment or underemployment, low living-wage jobs, limited economic opportunities or business investments in communities, and unsafe and underfunded schools—tend to explain outcomes for folks from low-income/low-socioeconomic/high-historically underserved backgrounds and/or under-resourced educational institutions. With the reproduction of social hierarchies that have historically privileged white, middle-class men and systematically excluded people of color, we see disproportionate impacts in low-income, low-education households and communities.
When designing or planning studies with individuals who are considered economically or educationally disadvantaged, by the 2018 Requirements of the Common Rule (OHRP 2019), you can focus your approach on recruitment, enrollment, and consent—the idea is to respect the unique needs and specific interests of individuals. Consider using one or more of the strategies below.
Equitably distribute risks and benefits to participant groups, which tends to facilitate director benefits to prospective participants and few to no participants decline participation due to perceived risks.
Offer research participant incentives commensurate with personal or familial income/socioeconomic background, time commitment, and risks of participation. This strategy helps prospective participants to not feel unduly influenced, induced, persuaded, or swayed in agreeing to join a study.
To limit barriers to participation for individuals from low-income backgrounds and encourage participants on fixed-incomes, build in costs for childcare, medical care, and/or transportation
To facilitate a welcoming environment with care and concern for nonnative speakers and individuals with lower levels of literacy, develop recruitment material and consent forms in native languages and at reading levels of participants.
Office for Human Research Protections (OHRP). (2019). Electronic code of federal regulations. 45 CFR 46. U.S. Department of Health and Human Services. Retrieved from: https://www.ecfr.gov/cgibin/retrieveECFR?gp5&SID583cd09e1c0f5c6937cd9d7513160fc3f&pitd520180719&n5pt45.1.46&r5PART&ty5HTML#se45.1.46_1116
More Methodspace posts about research ethics
Informed consent is the term given to the agreement between researcher and participant. In this post Janet Salmons offers suggestions about the intersections of the Internet communications, ethics and participants.