Novel data-sharing plan gives tribes more say
Tribe owns data, must review use before publication
One of the thorniest issues in tribal research is the question of who controls the use of the data taken from tribal members or tribal lands. Is it the researcher, who collected the data, or the tribe that gave permission for its collection and use?
This question was at the heart of a long-running dispute between the Havasupai tribe in Arizona and Arizona State University, over biological samples collected from tribal members for one research purpose and later used for other types of research without consent of the donors.
That conflict was resolved in 2010 with a legal settlement. But it hasn't put to rest the concerns of tribes that they might be exploited in research.
One institution involved in tribal research has come up with a way to bridge that gap of distrust — a data-sharing agreement worked out between Oregon State University in Corvallis and the Confederated Tribes of the Umatilla Indian Reservation, located in eastern Oregon.
The agreement, which was approved by IRBs representing both the university and the tribe, limits the use of data and samples collected from the Umatilla members and from tribal lands. It requires that materials and data be returned if the project is terminated and also gives the tribe the right to review articles using the data before they are published.
The agreement was the outgrowth of a long-running collaboration between OSU researchers and the tribe, says Anna Harding, PhD, an associate professor of public health at OSU who has worked with the Umatilla for about a decade.
"Everyone understands that you can't just walk into a tribe and start doing research with them," she says. "You have to develop a working relationship and that takes time."
Harding says that she and other researchers both from the university and within the tribe had done previous research on environmental exposure of the Umatilla due to their traditional tribal practices. Because the tribe is engaged in subsistence practices such as hunting and fishing, environmental issues are important to tribal members' health, she says.
This led to pursuit of a grant from the Environmental Protection Agency regarding the effects on tribal members of polycyclic aromatic hydrocarbons (PAHs), which are produced from burning fuel.
The research plan was to look at PAH exposure for members who smoked fish and game in traditional smokehouse structures, Harding says. She says the grant, which is now in its third year, involves a large number of investigators at OSU who are looking at PAHs.
It was important, Harding says, to make sure all of those investigators understood the sovereignty rights of the tribe regarding their data.
"We wanted to make sure that all the other investigators at OSU understood that data collected with the tribal members or related to some of their practices or activities belongs to the tribe," she says. "That's a very foreign concept for university investigators — most university investigators thought that the data belonged to them."
Harding's group began looking for a material and data-sharing agreement that they could adapt for their own use, but couldn't find any that worked for their situation.
"We started with some suggestions that had been put out by the Indian Health Service — it wasn't necessarily a form or a template, but some guidelines," she says.
Her group brought in stakeholders from OSU, including the IRB, tribal authorities, and legal and IRB representatives from the Pacific Northwest National Laboratory, a Department of Energy research facility in Richland, WA, with which some of the investigators were affiliated.
"A group of us working on this sketched out what we thought should be included and these other people edited and changed and so forth," Harding says.
Harding says it was important to maintain the intellectual property rights of the tribe. While the term is usually used to describe an invention or composition, it can also refer to a tribe's traditional practices and accumulated knowledge.
"On another project I've worked on, we've collected plants that are considered some of their first foods, and so plant harvesting areas and methods around the use of native plants might be considered intellectual property," she says.
Harding says the OSU IRB didn't have issues with the agreement.
"They thought it was a really good idea," she says. She notes that tribe had its own IRB approval process, through the Portland Area Indian Health Board.
The material and data-sharing agreement has since been adapted for use in other research projects, Harding says.
When the project is completed, the agreement calls for returning results to the tribe. One of the co-investigators on the project, Stuart Harris, is a tribal member who is the director of the tribe's science and engineering department. Harris will review any articles prior to publication.
His involvement in the project was an important key to its success, Harding says. "We're fortunate that Stuart Harris trained as a scientist and is our gatekeeper," she says. "And Barbara Harper (an OSU researcher) who has worked with the tribe for almost 20 years is well respected. We wouldn't have attempted anything like this if we didn't have them there, as scientists, working within the tribe."
She says that when an IRB is approached about tribal research, it's important to know that the tribal partner has this kind of scientific infrastructure already available.
"Is that community partner really capable of doing this kind of work? Tribal capacity-building is something we're trying to do as well."
And working out the data-sharing agreement, including the ownership of the data is vital, Harding says.
These issues — who owns the data, who determines how it can be used — crop up not just in tribal research but in other types of community-based research as well, she says.
"I think it's true that most communities would like to have some sort of a data-sharing agreement," she says. "But I'd say the main distinctive thing is that tribal groups are sovereign nations and so it's a government-to-government relationship instead of a community-to-university relationship. It's a big power difference."
Reference
Harding A, Harper B, Stone D, et al. Conducting Research with Tribal Communities: Sovereignty, Ethics and Data-Sharing issues. Environ Health Perspect 2011 Sep 2. Epub (includes copy of material and data-sharing agreement).
One of the thorniest issues in tribal research is the question of who controls the use of the data taken from tribal members or tribal lands. Is it the researcher, who collected the data, or the tribe that gave permission for its collection and use?You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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