Overview
An organization’s Institutional Review Board (IRB) protects human subjects involved in research activities and ensures that research is conducted in an ethnical manner. The principles of the Belmont Report that govern the IRB (see below) were birthed from a history of unethical practices toward ethnic and racial minority research participants. The IRB plays an important role in ensuring that researchers are held accountable to ethical research practices.
The IRB is composed of a panel of trained researchers, practitioners, and community members who review studies to ensure that research is conducted in an ethical manner by adhering to three guiding principles: (1) respect for persons (i.e., treating individuals as autonomous human beings capable of making their own decisions); (2) beneficence (i.e., minimizing risks of harm and maximizing potential benefits); and (3) justice (i.e., burdens and benefits are shared equitably).
While the IRB focuses exclusively on compliance with the letter of these principles, racial equity considerations are essential to fully comply with their intent. Therefore, we encourage researchers to maximize ethical research by considering racial and ethnic perspectives when drafting an IRB application. Below, we make actionable suggestions for how to do so. While these considerations are not required to obtain IRB approval (i.e., IRB approval is not contingent upon the inclusion of these specific examples), we believe that consideration of racial equity and IRB principles to the fullest extent possible—within project resources and boundaries—will further the goals of the IRB.
Racial Equity Considerations When Submitting to the IRB
Researchers can apply the following racial equity considerations at various phases of the research process.
- Engaging with the community (IRB Principle – Respect & Beneficence): The racial equity considerations we present require researchers to gather sufficient background information on their study populations to maximize the protection of human subjects, as intended by IRB principles. In some cases, researchers may not know their study participants or communities well enough to carry out these recommendations. In these instances, researchers may outline a plan to get background information on their study populations, perhaps by hiring a community researcher (or someone else that knows potential participants/communities) or convening a community advisory group. This shows respect for persons because researchers are acknowledging that community members are autonomous and can make decisions on research that affects their lives and communities. It also shows beneficence because the research study will be informed by participants themselves, allowing them to receive maximum benefit from the study and minimize any potential harm that could occur from not obtaining their input.
- Development of study documents (IRB Principle – Respect & Beneficence): The language used in study documents (e.g., consent forms, recruitment materials, and data collection protocols) can be formal and intimidating for many participants. As part of IRB requirements, research staff should ensure that the reading level is appropriate for the target population. An additional race equity consideration involves ensuring that study documents are developed for groups for whom English is not the primary language. This includes the consideration that, sometimes, specific wordings and phrases (e.g., cultural idioms) developed in the non-English language do not translate directly to English (and vice versa). Using trained translators is the best approach when translating documents into other languages. This applies to all study documents, including recruitment materials, surveys, interview guides, etc. In addition, it’s important to ensure that the developed measures in study protocols have been tested and are valid for participants. This can be achieved by pilot testing or obtaining community review of the study protocols (e.g., conducting cognitive interviews). Ensuring that the language and wording can be easily understood by the community shows respect for persons by allowing participants to exercise their autonomy and share their insights and decisions. It also shows beneficence: If study documents are more easily comprehended by, or accessible to, study participants, then participants are more likely to provide accurate data. This can maximize benefits to the community and applicability to research questions.
- Equitable selection of human subjects (IRB Principle – Justice): When identifying potential study participants, individuals or groups should not be selected solely because they are readily available or convenient to reach. For example, when a research question seeks the perspective of Latinas in the United States, it is equally important to reach a Latina who is a migrant worker, Spanish-language dominant, and does not have access to a car and a Latina who is English-dominant, works in an office, and has access to a car. Researchers should carefully select participants who are appropriate to answer each research question. This may involve recruitment efforts outside of locations that are convenient or comfortable to the researcher, if those locations are most appropriate for the target population (e.g., local cultural restaurants, grocery stores, places of work, or community cultural events). It may also involve recruiting during nontraditional work hours. This practice ensures justice because it distributes the benefits and burdens for participating in research—in other words, those who may have limited ability to get to a location that is convenient for the researcher may more easily be able to participate in and benefit from research.
- Data collection (IRB Principle – Respect & Justice): Researchers should also be considerate in how they collect data. For example, data collectors should speak the language of the study population and be trained in working with, approaching, and communicating with specific study populations (e.g., people who have experienced trauma) to ensure maximum understanding by participants and demonstrate respect for persons. Additionally, study teams should consider using data collectors who reflect the study population (e.g., male facilitators when conducting focus groups with teenage boys about sexual health). Finally, researchers should consider other contextual factors when scheduling data collection activities (e.g., populations with nontraditional work hours, need for childcare) to improve justice for participants.
- Cost of participating in research (IRB Principle – Justice): Research teams typically offer monetary compensation to make research participation a more revenue-neutral experience and/or recognize participants’ time. When considering revenue neutrality, try to anticipate what the participant may be forfeiting to be part of your research. For example, will transportation costs for participating in a focus group be reimbursed? Are gift card amounts enough to cover costs associated with missing work or arranging childcare to participate in data collection? Adequate reimbursement is critical to neutralize costs for individuals, especially when their participation might otherwise be too costly. When recognizing participants’ time and offering a token of appreciation (e.g., gift cards), the monetary value of their time should be equitable across respondent groups, absent any justification to do otherwise (i.e., more time-intensive involvement from one group); this will ensure justice. For example, are school principals offered larger gift cards than other adult participants, such as parents? Researchers should avoid inadvertent judgements about the value of people’s time based on their job or socioeconomic status.
Adapted with permission from ChildTrends.org "Racial Equity Considerations and the Institutional Review Board"
Resources
Guidance: Ethical Issues in Research
International Research and Research with Non-English Speaking Populations