GENEWATCH
 
SHARING AND CARING
By CRG staff - interview with Francine Gachupin
 

Francine C. Gachupin, PhD, MPH, CIP, has worked with American Indian tribal communities on chronic disease surveillance, public health practice, and epidemiology. She has been co-Chair of the National Indian Health Services Institutional Review Board and Chair of the Portland Area IHS IRB and the Southwest Tribal IRB.

 

GeneWatch: How does tribal sovereignty complicate things for researchers?

Francine Gapuchin: Just as you would if you were going to do research in any other country, you need to have permission to be in those boundaries, to be speaking with that population. In the United States, tribes are their own entities, so there needs to be very clear approval granted from the tribe in order to conduct this kind of research. I think some researchers understand that, but most don't, and so they end up doing things in a roundabout way and not getting the level of clearance and understanding that should have been there from the onset.

I think the Navajo Nation is a good example of a tribe that has been really firm in setting its boundaries and saying, "If you're going to do research with us, you will abide by our rules." These rules are extensive, and researchers coming in must agree to every single point-including that the data being collected belongs to the Navajo Nation and it will be given to the Navajo Nation at the conclusion of the study. Most tribes have not established such extensive rules, but researchers still need to understand what the expectations of the community are-especially when it comes to biological specimens.

Why is it that researchers have such interest in studying American Indian communities in the first place?

Depending on who you ask, some people will say there is a lot of research being done on American Indians, and others will say there is very little. One reason some researchers want to study American Indians is that there is so much variation between tribes, and it's something we still don't have a good grasp of. I think scientists are interested to know the extent of that variability, and to study populations that are potentially unique.

You have noted before that despite this variation between tribes, some studies have used samples from just one or two tribes and tried to generalize the results to cover "American Indians" as a whole. Is this something that continues to happen?

It happens in a lot of different realms-these extrapolations happen where they shouldn't, or where they should be footnoted to say where the data came from and that the generalizability might be limited.

Do you find it's true that many tribes tend to be suspicious when they are approached by researchers, or begin with the assumption that the research might do more harm than good?

It's very community specific. For tribes, as they're doing their day to day living, when somebody comes in who is not from the community, you know. When researchers show up, it is very obvious to the community. So when someone comes in for the sole purpose of answering a research question, without trying to get to know the community, without spending time trying to understand the community's values-if you don't take a personal interest in the group of people that you are studying, you start off on the wrong foot to begin with. Researchers need to realize that a community will know: "If you really cared about us, you would have gotten to know us at least a little bit."

Researchers often don't have the time or luxury to do this, so they have to think about how much they can really invest in order to do research in this community. I think it's a rare researcher who really does invest the time and energy necessary, but in the long run, they're the ones who end up with the best research.

Communities are often suspicious when a researcher comes in, because they know that in order for someone to really serve their best interest, it's going to take a lot of time. How the researcher comes in really does dictate how the community receives them, because they can see very quickly from the beginning how much give and take there is going to be. The majority of researchers come in, do their research, and leave, without every really getting to know the people. When that happens, it leaves an impression that makes it more difficult for other researchers-they'll have more to prove than the ones who messed things up to begin with. Tribal communities are small and connected, so even though one community may not have had that experience, they may know of someone who did in another community. Right now, the Havasupai experience is the example that most southwestern tribes are looking to, which makes them not want to participate in any studies-which is really unfortunate, because they could also be turning away beneficial research.

Does this give researchers extra incentive, then, to make sure they are doing things to benefit their subjects, like returning their research results?

I'm hoping this is in the minds of all researchers, not just when they are doing research specific to tribes. One of the basic tenants of the ethical principles that guide human subjects research is that you are trying to do good and not harm, and that if there is harm you are doing everything in your power to minimize it. So I don't think it's exclusive to tribes, and I hope it's a basic tenant that all researchers hold.

So one of the places this may be different for tribes, then, is when researchers don't understand that something which might not be considered a harm in other situations-like not being able to give back tissue samples-could be considered a harm in a tribal context.

Right, which is why it is so important that researchers do their homework and learn about the people they will be working with.

Do you have any examples of researchers who have really done it the right way?

One example is a study that looked at metabolic syndrome and diabetes in children. When the initial project started to happen, they realized in their interviewing of the children that there was a lot of mention of depression. One of the requirements of the initial research agreement was that the team needed to go back to the tribal council every quarter with preliminary data, and this was something the project team took very seriously. So they reported these incidental findings about depression, and the tribal council became very interested-there had been some suicides, and this was data that could show them how much of a problem it was for their community. The council told the research team this was something they were interested in, and they asked if the research team could look into it further. And the team did work on it, even though it was not their original focus. Additional funding was sought and additional assessments were done. The researchers were studying something that was a priority to the community, and by reporting back to the community they didn't just say "this is interesting"-they followed up on it. To me, this is an example of really good research. They showed a commitment not only to their research question, but to the group they were studying.

 
 
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