Sara Hull: Responsible genomics research with tribal and indigenous communities
Sara Hull - Image courtesy of Sara Hull and the National Human Genome Research Institute
Click here to listen to the full podcast episode
Dr Sara Hull is a bioethicist who has worked at the National Institutes of Health for more than 20 years, helping researchers make sure their work is done ethically and doesn’t cause harm to the people involved. She has a particular interest in working with indigenous and tribal populations in the US - people with whom the scientific community doesn’t have the greatest track record. This interest was first sparked when she got involved in a project aiming to find out whether people were comfortable for researchers to take biological samples from them and use them responsibly in the future to answer other scientific questions.
Sara: In these studies that we conducted and that many others conducted, we learned that a majority of the public is comfortable with allowing researchers to have fairly broad discretion about future uses, but a substantial minority, 15% - 20%, sometimes higher would say, no, I have real concerns about that. I would want to know what's being done, I would want to know who's doing it and I'd want an opportunity to weigh in. And for a while I was very focused on the majority perspective and how that ought to shape policy. But increasingly I became concerned about who we were leaving out of research when we had those policies that allowed for broad sharing and for broad future use. And that's actually where I took a dramatic pivot and started really paying attention to the concerns expressed by populations. It wasn't a coincidence that many of those individuals were members of communities that have historically been excluded from research who weren't realising the benefits of the research. And that made me rethink some of our standard policies, and think about the potential negative impacts they might have on research with some of other populations who are experiencing the greatest health disparities, the greatest burden of disease.
Kat: So when you started to look at these populations who were being excluded or perhaps self excluding from this kind of research, how did you start to understand what was going on? How did you start to engage with them and figure out what's going on inside there?
Sara: I think probably coming into this work, I had some misconceptions about tribal populations not being interested in genetics research. I think I had heard that some tribes had established moratoria on participating in genetics research and I, through attendance at meetings and really starting to listen, I realised there was actually great interest by some tribal researchers, by some members of the community, in the power of genetics and how it might be beneficial to their communities. They were just worried about doing the research in a responsible tribally engaged manner that would actually translate into realising those benefits without some of the unethical approaches to reach research that many of the tribes have been harmed by.
Kat: Can you give me some examples of where things have perhaps gone wrong in the past that would make these tribes and these populations very suspicious of scientists turning up wanting to do stuff with them.
Sara: So there's, there is a long history of many examples of research that you may have heard referred to as helicopter research. The idea is that researchers come in with their research questions, kind of fly into communities, extract data and samples and bring those away, do their research, publish on it and never returned to the community for those benefits to be realised. And because they haven't really engaged with the tribes ahead of time, because they're coming in with a pre-existing set of ideas about what ought to be studied. The research isn't well tailored to be translated into tangible benefits for the community. And in fact, many times has caused stigma and harm to those tribes based on the way that it's reported out in the literature and in the press.
Sara: Perhaps the best known example that's been written about quite a bit in the literature I refer to as the Arizona State University case, you'll also hear it referred to as the Havasupai case. It concerns a tribe in Arizona whose biospecimens were collected for use in type two diabetes research, but that were retained and used for secondary research on a number of topics that were quite stigmatising and harmful to the interests of the tribe. And this resulted in a lawsuit and a settlement where ultimately the tribe was able to receive the specimens that had been collected back from the researchers symbolising the end of the research and the ability to handle the specimens respectfully in accordance with the views of the tribe.
Kat: So this is the Genetics Unzipped podcast, and I'm fascinated by genetics and we're all fascinated by genetics. And I think we can kind of fall into the trap of going, oh look, there's some interesting diverse populations. Let's get some DNA and let's do some genetics and it's going to be really exciting, It's going to tell us loads of cool things. How has that kind of, for want of a better way of putting it, how is that working out? Because there's an exciting urge to study and engage populations in this kind of genetics research, but how, how can that be done in this basically culturally right way that doesn't lead to harm?
Sara: Yeah, and that's another great question. So almost, almost exactly three years ago today, I was part of a group from the National Institutes of Health that was invited by Alaska Native Tribal Health Organisations to participate in a workshop on genomics research. And I mean, I worked for the National Human Genome Research Institute and they invited us to come and learn about their health systems, their delivery of care, their research programs, and to really engage with the community about research priorities. And it was really just a starting point. It may seem like that was so long ago, that was three years ago, and it might seem like all old news, but it fits into this point that I want to emphasise again and again, which is that the way to do this best it requires patience, it requires being able to establish relationships and to listen.
Sara: So in this case, we listened to what tribal leaders and representatives were telling us about health priorities in the community. Some of which might be amenable to including a genetic component, others of which would not really benefit from the inclusion of genetic science. And so part of the barriers to being able to incorporate genetics is taking the time to help, to educate the community about what it really means and how those benefits can be realiSed, how it might be beneficial to learn about how diseases are inherited within families, and to learn about how drug metabolism might vary depending on the genetic makeup of an individual and how we might be able to pick the right drugs or the right doses based on knowing something more about the genetics of a population.
Kat: So when you talk to these populations they're not a sort of homogenous mass, but you sort of have these individual conversations. You find out what people are interested in knowing what they're interested in knowing about their health, what they don't want to know about. Are there specific things that do come up that people do want to know about, particularly around their health, or also as well, perhaps around their ancestry, which is something that we can also understand from, from genetics?
Sara: In my conversations with tribal populations. What I hear consistently simply is that the community wants to hear what the research uncovered and how it might be relevant to, and hopefully ideally beneficial to the community, but even just learning about the science and understanding that it's sometimes takes time to translate results. I've never heard from any individual or tribal group, that there is an interest in receiving results related to genetic ancestry. In fact, if anything, I've heard the opposite, that there's concern that participating in research might lead to genetic information that gets conflated with information about tribal identity or membership. And there are sometimes questions about how we will keep this information separate, but there has been no interest in the receipt of those kinds of results. In the context of tribal research that I've heard.
Kat: Why is it important that we do get a diversity of populations of ethnically diverse of tribal groups involved in genetic research in this kind of genetic and health research?
Sara: Well, in general, we want those groups to realise the benefits of our investment in research. And this gives us a pathway to close the health disparities gap. And when we're talking about tribal communities, I mean we do see health disparities in other racial and ethnic minorities, but tribal populations in the United States are distinct in part because tribal membership is not really a racial or an ethnic group, it's a political status. Tribes have a special relationship with the federal government and we're obligated to uphold commitments that I can say pretty confidently have not been honoured in the past. We're supposed to deliver healthcare and deliver access to other benefits in exchange for the land that we acquired through colonisation. And there have been persistent health disparities in indigenous populations since colonisation and many of these can be attributed to the social conditions that were created by colonisation. And so to break out of these patterns, we really need to look at the mirror and figure out what it is that we need to be doing differently as a matter of justice.
Kat: That’s Sara Hull. Thanks to my other guests Laura Koehly and Charles Rotimi, and also thanks to Alyssa Jones at the NIH National Human Genome Research Institute for making it all happen.
Find out more about the Alaska Natives and Genomics workshop on socially responsible genomics research: https://www.genome.gov/news/news-release/NIH-and-Alaska-Native-leaders-identify-how-to-achieve-socially-responsible-genomics-research
Meaningful collaborations can end ‘helicopter research’, Fernanda Adame, Nature https://www.nature.com/articles/d41586-021-01795-1
