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Cross-cultural research raises special challenges
Consents, training interpreters may require IRB flexibility
When a researcher breaches a cultural divide to study a group of people, he or she needs more than a translator to convert documents from one language to another. What's needed, says researcher Martha Baird, is an interpreter, a sort of cultural broker who has direct contact with participants and works closely with the researcher.
Baird, PhD, ARNP, has spent the last several years conducting research with women from the Dinka tribe of southern Sudan who have relocated to the United States as the result of a long and bloody civil war. In order to access this community, many of whom speak and read limited English, she relies upon interpreters who accompany her to interviews and help Baird and the refugees understand each another.
In the process, Baird has discovered the difference a flexible IRB can make in helping to facilitate her research. She says some IRBs' expectations about issues such as informed consent and training of interpreters don't conform to the realities of cross-cultural research.
"We make assumptions that everybody wants things in writing, that everyone understands these Western values that we put across," Baird says. "They don't necessarily translate."
Baird dealt with the downside of these assumptions when she did her dissertation work with a group of Dinka women in Kansas City. In the course of that work, she hired a translator to translate documents, including an informed consent, from English to Dinka, and two interpreters to help her communicate with the women.
That experience taught her powerful lessons about the limitations of the standard model of human subjects protections. For example, she spent time and money translating consents and recruitment materials into Dinka, but then discovered that many women who spoke that language couldn't actually read it.
The IRB she was working with at the time required that her interpreters, who were members of the Dinka community, get online human subjects protection training that turned out to be wholly inappropriate for them. For example, one module explained the importance of the Nuremberg Code in the development of human subjects protections. Baird had difficulty explaining this to her interpreter, who had never heard of World War II.
"The word 'iterative' comes up a lot in qualitative researchmeaning that you kind of figure things out as you go," she says. "And that is truly what ended up happening with this."
Collaborating with the IRB
These lessons served her well when Baird went on to do further study with Dinka refugees, this time as an assistant professor at the University of Kansas Medical Center. At that institution, she found an IRB that was willing to work with her to find a more effective way to meet regulatory requirements while still protecting her subjects.
Karen Blackwell, MS, CIP, director of the Human Research Protection Program at the medical center, says the key was using the flexibility in the federal regulations to craft a plan that was appropriate to the research and to the research population.
For Baird's work, Blackwell's office determined that a waiver of documentation of consent was appropriate.
When it came to training Baird's interpreter, Blackwell took a different approach as well. Instead of having her go through another computer course that she might not understand, Blackwell invited Baird and the interpreter to visit her at the campus and discuss issues that Blackwell was concerned about.
Community service vs. research: At the same time Baird was investigating health issues in the Dinka community, she also was assisting them with needs assessment so that they could identify areas they wanted to improve in their community.
In order to ensure that women wouldn't feel obligated to participate in the research portion, Baird would hold a community meeting, then have a break, explaining to the women that they could leave if they wished before the research part started.
"We wanted to make sure the interpreter was aware that there was a part that was for the community and everybody was invited vs. the second half of the day that was specifically for research and that people could leave and not be part of the research if they wanted," Blackwell says.
Voluntariness: Because the pastor of the women's church had endorsed the project, and the interviews were conducted at the church, Blackwell says she wanted to ensure that the women participating were doing so voluntarily.
"I wasn't sure about the cultural context, whether the fact that this was voluntary could be communicated well," she says. "The interpreter understood my concern and put me at ease, saying that with all the things these women have been through, they're not about to do anything they don't want to do."
Privacy and confidentiality: Blackwell says the interpreter needed to understand the importance of keeping the discussions confidential, particularly because they concerned issues such as sexual health and because the interpreter was herself a member of the community.
"We had to say that what is shared in the discussions is not shared with her family members, it's not talked about outside the research setting," Blackwell says. "It's challenging, because she's going to see these people at her church and at the grocery store."
Community research drives change
Baird says the conversation that Blackwell had with her interpreter made a big impact on her.
"She really felt like she was part of the study she was a researcher, she was a professional," Baird says.
Blackwell says it's becoming more common for IRBs to allow for individualized human subjects protection training, particularly with the increase in community-based participatory research, involving organizations that may be new to research.
"It's changing the way we look at how we work with our research partners in the community and how we reach out to folks who are participating," she says.