IRB Office plays FAIR
FAIR Committee is a foundation for Research team’s DEIBA efforts
As some universities and other corporate entities pull back from diversity, equity, inclusion, belonging, and access (DEIBA) efforts, whether for philosophical or political reasons, Northwestern continues to stand firm in its commitment to creating a workplace where everyone can contribute to research excellence.
One way this effort manifests is within the Office for Research’s Institutional Review Board (IRB) Office, which has created a committee to support and advance DEIBA practice.
Founded in 2021, the Fostering Accessibility and Inclusivity in Research (FAIR) committee’s mission is to nurture inclusive and equitable practices across Northwestern’s human research landscape. These goals align with federal stipulations regarding research, says Edeth Engel, co-chair of FAIR and social-behavioral lead within the IRB team. “The federal government has been consistent in that diversity and inclusion in research are of utmost importance,” she says. “We want to ensure that this bottom line continues to be met.”
In addition to historically excluding certain groups, Engel adds that the research community as a whole has, at times, abused the trust of research participants. “That’s why the IRB exists, to protect people who previously have been subjected to egregious abuses,” she says. “Reconciling those wrongs and making sure that we rebuild that trust and reengage those communities is really important.”
While federal regulations aimed at protecting individuals involved in research have existed for a half-century, the efforts have seemed especially crucial given recent backlash against DEIBA in some quarters, says Lucas Sikorski, an IRB Office biomedical manager and co-chair of FAIR. “The ideas are misunderstood, misconstrued, and people aren’t talking about the same things when they use these terms,” he says. “Everything is context-specific.”
In the medical context, for example, Engel says that prescriptions sometimes have recommended doses that vary by gender or even racial background. Until researchers began increasing the diversity of participants' samples, “We have missed crucial information that is different amongst different demographics,” she says. “We need to have strong sample sizes of different demographics to ensure that the science is accurate in treating everybody.”
Engel says that ensuring the representation of diverse groups also improves educational studies. To test whether the implementation of a given curriculum has been effective, researchers need to test them in various socioeconomic and geographic areas, she notes.
“It ensures that research outcomes are better, are accurate, are more effective, and applicable to the population,” adds Nathalia Henry Whitely, executive director of the IRB Office and a FAIR work group member. “Whether it’s hardcore science like biomedical healthcare, or it’s social-behavioral research.”
To help advocate for outcomes aligned with DEIBA goals, FAIR provides resources through its website to prompt researchers to think about how they can engage communities cost-effectively, Engel says. “I see people putting up flyers in places where people will go that offer more public access, like libraries, food pantries, post offices, coffee shops.” Henry Whitely adds that social media strategies can also play a role.
Through all of its efforts, FAIR strives to ensure community-engaged research that includes stakeholders as partners—from design to implementation to sharing results. The committee also aims to incorporate non-English-speaking participants and use gender-affirming and other inclusive language to engage LGBTQ+ people better.
Incorporating non-English-speaking participants starts with ensuring that consent forms, for example, are available in other languages, Henry Whitely says. These forms “essentially outline everything entailed in the study, the risks and benefits, and what procedures or activities the participant will do,” she says. This information allows people to voluntarily decide whether to participate in a study. “We have been working with various stakeholders to get our documents translated,” starting with Spanish and “chipping away at this until we can include other languages.”
By sharing results, community-engaged research builds more lasting relationships, Engel says. “We added template language into our protocols about sharing results with participants because we find that often when they participate in a study, they never hear about it again,” she says. This final step ensures that participants have a better chance at really understanding the impact of their contributions to science.
“Working for an academic institution, we have a vested interest in generating and sharing knowledge, and that means not having it siloed in an ivory tower,” Sikorski adds. “We want to promote why research is important, why producing knowledge is important, why trying to create more opportunities for human flourishment is important.”
The IRB Office and FAIR committee recognize the ongoing challenges and efforts required to fulfill their DEIBA aspirations, but they are committed to this work, says Henry Whitely. “We hope over time to impact our institution and our partners so that we are no longer talking in terms of an initiative, or a committee, or a workgroup, but rather a way of working that is truly part of our DNA.” — Ed Finkel