Podcast with Clare Barker
Today’s podcast features Clare Barker, guest editor of our June Special Issue for 2021: Global Genetic Fictions. Barker and the other authors of the issue ask questions about and engage with the Human Genome Diversity Project, discussion aspects of biocolonialism. For instance, what does it mean for genetic researchers based in the global North to do research on Indigenous communities, to use that data in whatever ways that they use it, often not using it to help or support those communities themselves? The critique of this mode of research is that genetic ‘mining’ is in a continuum with previous modes of colonialism. Rather than extracting riches from the land or the resources of communities, they’re now kind of looking inside the human body. Listen in for more on this fascinating topic!
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Dr Clare Barker is Associate Professor of English Literature (Medical Humanities) at the University of Leeds. She is the author of Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality (2011) and the co-editor of The Cambridge Companion to Literature and Disability (2017). She has co-edited two special issues of the Journal of Literary and Cultural Disability Studies, ‘Disabling Postcolonialism’ (2010) and ‘Disability and Indigeneity’ (2013), an issue of Moving Worlds: A Journal of Transcultural Writings on ‘Literature, Medicine, Health’ (2019), and most recently has guest edited a special issue of BMJ Medical Humanities on ‘Global Genetic Fictions’ (2021). Her current research focuses on Genetics and Biocolonialism in Contemporary Literature and Film.
SCHILLACE: Hello and welcome back to the Medical Humanities Podcast. I’m Brandy Schillace, Editor in Chief, and today I have with me Dr. Clare Barker. She’s an Associate Professor in English Literature and also Medical Humanities at the University of Leeds. A lot of her interest is postcolonial literature, Indigenous literature, and Disability Studies. And her most recent book, or her first book I should say, was Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality. She also has recently edited The Cambridge Companion to Literature and Disability. And we’re really pleased to have her with us today because she just was guest editor on a special issue for Medical Humanities called Global Genetic Fictions. Clare, thank you for being with us.
BARKER: Thanks very much for having me.
SCHILLACE: I wonder if you could tell us, I mean, it’s an interesting title: global and genetic and fiction all coming together like that. It came out in June as our special issue. And I wonder if you could tell us a little bit about how did you come to that topic to begin with? What was your original impetus? ‘Cause, of course, if our listeners don’t know, it takes a long time to put one of these together.
BARKER: Yeah. I came to it kind of originally through my own research. As you mentioned, I work on postcolonial literatures. And I actually came to thinking about genetics in fiction and the connections between them through some of the novels that I was reading. There’s a brilliant novel by the Maori writer Patricia Grace called Baby No-Eyes, which has all kinds of interesting things going on in terms of medical ethics in that novel. But she also connects that with genetic research and the kind of research that is done often with Indigenous communities. So, things like the Human Genome Diversity Project, where Indigenous communities have various kinds of genetic tests and things to find out about the histories of human migration, human evolution, and are often kind of seen as the kind of key to finding out this kind of information. So, I came to genetics and literature through these texts by Indigenous writers that were really questioning the ethics and the politics of genetic research and that were very much coming from the perspective of researched communities.
BARKER: And so, I started looking into things like the Human Genome Diversity Project, and that’s, and from then I moved on to exploring things about biopiracy and biocolonialism. So, I really very much came to genetics from the perspective of ethical considerations and cross-cultural issues. What does it mean for genetic researchers based in the global North to do research on Indigenous communities, to use that data in whatever ways that they use it, often not using it to help or support those communities themselves?
SCHILLACE: Just to jump, no, just to jump on the back of what you just said there, because I think it’s really important: For those of us who are new to this area, we’ve done a lot of work on Disability Studies and things at Medical Humanities.
SCHILLACE: But specifically, the colonial aspect, the way in which this is a colonizing event, could you say a bit more—I feel like you were kind of moving in that direction—but a bit more about what biocolonialism is and how we’ve come to understand it more recently?
BARKER: Absolutely. Yeah. So, a lot of Indigenous activists and scholars and commentators have started to use the phrase “biocolonialism” to refer to what they see as a kind of a new phase of colonialism that has a lot of continuities with previous phases of colonialism. And they’re talking about the kind of the mining of the human body, essentially, for its riches, for its treasures, for the data, the knowledge that is held within. So, they’re talking about kind of genetic research that is being done on Indigenous communities. And I’m saying “on” purposely there, not “with” because I think this is a certain mode of research in which certain communities are seen to have all kinds of valuable information, whether because they are kind of remote or relatively isolated communities who are seen to be genetically purer than communities that have mixed more, or because maybe they have resistance to particular diseases or things like that. So, they kind of possess something that is valuable to researchers who are usually based in the global North. And the kind of critique of this mode of research is that it’s in a continuum with previous modes of colonialism. Rather than extracting riches from the land or the resources of communities, they’re now kind of looking inside the human body.
SCHILLACE: Right. And that’s really interesting. It’s very, it’s data mining in a very different kind of context than we’re normally used to thinking.
SCHILLACE: But I think that you said “on, research on” was being used quite intentionally.
SCHILLACE: And I think that’s really interesting to point out, because one of the things that we’ve really worked hard to try and do as a medical humanities journal that is also focused on social justice is the concept that you’re supposed to be talking with and hearing from.
BARKER: Yeah, yeah.
SCHILLACE: But so often, the research that comes in is about, right, or on, as you put it. And I think this is also true when you’re talking about some medical humanities, we’re quite, as a medical humanities journal, we’re very history, social sciences, arts, humanities. We’re very humanities based. But sometimes, even in narrative medicine, you again get the about and the on rather than the with. So, talking about patients or about communities or about disabled people, instead of asking [chuckles] to hear from that community. And I think what you’re looking at is a really interesting intersection because disabled communities are already vulnerable and ignored. And then you add to that disabled communities that are also Indigenous communities. And I feel like you’ve really amplified the problems therein.
BARKER: Yeah. And I think it’s important to note that there are lots of other ways of doing research and lots of other ways of doing research that are happening now. So, there are, you know, kind of some great work is being done with Indigenous genomics, kind of thinking about how to do genetic research in ways that centralize the values, the priorities, the well-being of the communities themselves. So, there’s lots of Indigenous genetic researchers doing that kind of work more recently. But the kind of the biocolonial mode is one that has been quite long-standing now, especially with certain kind of high-profile projects like the Human Genome Diversity Project or the Genographic Project, for example.
So, to go back to your previous question about kind of coming to the topic of the issue. When I started thinking about genetics in fiction and the ways that we might look at that, it was kind of necessarily global in the ways that I wanted to approach it. And I think most critical work that’s being done on representations of genetics, say, has often focused on texts or cultural representations that come from the global North and are more focused on the kind of maybe the philosophical questions that are raised by how we conceptualize ourselves in the age of the genome rather than the actual kind of processes and ethics of the research that’s being done and how we’re getting that knowledge in the first place. So, yeah, that was my point of departure really.
SCHILLACE: Yeah. Well, let’s switch over to talking a little bit about global genetic fiction, the special issue that came up with us in June, and about some of the, you know, your contributors and their perspectives and how you address those very problems. I know you had a relatively wide breadth for this issue. But could you talk a little bit about, how did you go about choosing who would contribute to a special issue like this one?
BARKER: I organized a symposium a couple of years ago. I was wanting to see who was doing this kind of research, who’s thinking about genetics and representations in literature and culture. So, I organized a symposium and invited all the people I could find who were kind of working around that area. And so, there were literary scholars, historians of medicine, and people kind of working on the humanities side of things, but with an interest in genetics. And so, the contributors to the issue all, in fact, attended that symposium. And it was quite an interesting moment to hold it, actually, because it happened two years ago. And at that point, I couldn’t find too much work that was kind of engaging, particularly in the fictional side of things. But since, you know, in the last two years, three more books have been published about representations of genetics in literature, and it feels like it’s a really, it’s a kind of an area that’s really gathering momentum.
So, the, I mean, I did keep the remit for the issue quite broad. So, there were some articles that engage with the kind of questions I’ve been talking about: biocolonialism, Indigenous literatures. But there’s also essays that explore genetics in a whole range of different cultural forms from different places in the world, from Icelandic crime fiction and its representation of Down syndrome, for example, is one of the articles, to poetry from a range of different poets who are all kind of exploring through poetry the experience of taking DNA genetic ancestry tests and what that means for your sense of identity and heritage and belonging. Postcolonial fictions from India that are thinking about the implications of new genetic ways of understanding where we come from in context of diaspora, for example, as well. So, yeah, kind of a variety of different perspectives and across different cultural forms as well. So, like I’ve mentioned, there’s fiction and poetry in there, but there’s also TED Talks as one of the most kind of ubiquitous and accessible sources of information about scientific advances, through to literary fiction, popular fiction, art. Yeah.
SCHILLACE: Now, one of the things that we run into as a great hurdle, I think, at Medical Humanities is you want to hear from people who are in all sorts of countries, places you don’t normally hear from, from parts of Asia, from the African continent, from all these different places. At the same time, it’s very difficult when you’re, you know, when all the standards for what’s considered, right, acceptable literature are white and Western.
SCHILLACE: So, for instance, when we try to judge articles in their quality and make sure that there are competing in high quality control comparative to the other articles that come in, you realize that the entire publication industry is also deeply embedded in a kind of colonial, white, Western, often masculine idea of what good literature and good research is. And so, we’ve worked really hard to try and broaden so we are really hearing from other communities and not just giving lip service to that. But did you find that that was also difficult? I mean, what was the sort of demographics for your conference?
BARKER: Yeah, yeah. That is an important point, actually. And the demographic, I have to say, is kind of largely from academics working in the global North, basically. I mean, I kind of…. I’ve become more aware recently, since kind of putting the issue together, of work that is being done further afield and with a broader kind of cultural scope. But I kind of really, you know, I kind of really wanted to start thinking about genetic fictions, as I’m calling it, in this kind of way, thinking more globally. But like I say, a lot of the work is, yeah, is being done in the global North.
SCHILLACE: It’s interesting, isn’t it?
SCHILLACE: I mean, it’s not that it isn’t being done in other places, but the other thing is I had a meeting recently with higher up in the BMJ, the Institute for Medical Ethics, and they said, “How come we’re not seeing more articles coming in from these places?” And I explained that you can’t passively expect them. They haven’t ever been invited. [laughs]
SCHILLACE: And they’ve been excluded for an awful long time. And so, it’s really, the onus, I think, is on publications like our own and universities to really actually reach out and try to bring these people in. And that comes down to funding as well. I mean, you’ve got Plan S looming, and the Wellcome largely is funding, still, European and global North scholars for things for open access and stuff like that. So, I feel like, as I was, I’m very interested in the global genetic fictions. And I think about how even as we try to break out of these spaces and include more work from, it’s difficult. All the hurdles are there because of the structure of the whole systemic process of publication, literature, universities tends to be stacked against that happening. And so, this is one of the reasons why I like the fact that you focused on fiction, because the fictions themselves were often, were written by the Indigenous people. You’re actually, you are hearing from them, but even if it’s not the researchers. So, it’s a really interesting way of kind of trying to get around those problems and those struggles.
BARKER: Absolutely. And as you say, these are kind of systemic issues. And I think one of the issues working in this particular area is, again, is what is believed to constitute science as well. Because there’s a long history, for example, of Indigenous scientific knowledge being kind of discounted as belief rather than knowledge or being unscientific in some way, because it’s, you know, it’s a mode of science that doesn’t conform to the kind of narrow ways that science is conducted in Western institutions as well. And so, what’s really great about some of the fictions that I’m interested in is that they really question that and kind of take apart the assumptions about what constitutes science, what constitutes knowledge, what constitutes appropriate forms of knowledge, and also kind of asking questions about whether certain kinds of forms of research should be done or not. So, not kind of like how do we do this in order to meet the ethical requirements or the ethical standards that our field has set for itself? But actually, should we be doing it in the first place? And what are the benefits and to whom as well? So, asking really difficult questions about the institutions of science itself, I think.
SCHILLACE: Yeah. And I bring it up partly because I’m frustrated by the limits myself. I can’t accept, you know, you do have standards as a journal, for instance, and you do have to accept certain kinds of things and not other things. How do you make sure that you’re doing that in a way that is culturally aware [chuckles] and that isn’t just discounting something because you’re like, well, that doesn’t look like it came from Oxford or whatever, you know?
SCHILLACE: So, I think I find that that’s a challenge. And I think that’s a challenge that we as publishers, you as a guest editor, myself as a regular editor, have to engage with in a really active way. And this is what I was kind of saying in the meeting earlier, is that you can’t do it passively. You have to actively, just like you were saying, you have to ask these hard questions about not just are you following the guidelines that have been set, but are the guidelines problematic?
BARKER: Yeah. I think that’s right.
SCHILLACE: And I think that’s new territory.
BARKER: Yeah, and I think we’re using the term “fictions” quite loosely in the issue, not just to refer to works of fiction, literature and fictional narratives, but that the kind of beliefs that spring up around genetics and popular understandings of genetics that become kind of embedded as a form of knowledge or as a form of cultural currency almost as well. So, the ideas that are invested in that may not be necessarily scientific but are kind of connected to the implications that genetic knowledge has for a whole range of things from how we understand our ancestry and heritage, our current identity, our likelihood of catching particular illnesses or diseases. You know, all those things, they all have fictional narratives built around them that kind of permeate through culture. And what the kind of creative representations are able to do is really interrogate those and sometimes expose the kind of the situated nature of particular belief systems.
So, for example, we’ve got one article that shows how fictional texts in the 1990s were really pushing back against the kind of genetic determinism that was arising when the Human Genome Project was kind of in full swing.
BARKER: So, as this was happening and the news media was full of stories about that were kind of investing in an idea of genetic determinism, that we might find a gene for this condition or a gene for this behavioral trait or whatever, how fiction was really kind of pushing back against that and kind of saying, hang on a minute. This is a very, very narrow way of looking at human nature or behavior.
SCHILLACE: Mmhmm. I find that, that’s absolutely, absolutely true.
And I know we’re running close to time, but I wanted to say to our listeners, if, first of all, for accessibility purposes, there will be a transcript available of this on our podcast when the SoundCloud is released up on our blog. And I will also just say, if you haven’t checked out the June special issue, June 2021, special issue of Medical Humanities, Global Genetic Fictions, please do. The articles are very good. And in addition to that, we have a lot of the content up on the blog, as mini lay summaries along, some people also posted some audio content up there as well, just to tell you how they feel about their projects. So, we’re really keen for you to explore that and check that out.
And in addition, like Clare, I, too, am interested in hearing more about this area in a from and with kind of way rather than in about and at kind of way. And so, if this is your area of expertise, if you’re interested in Indigenous literatures, postcolonialism, genetics, these are all things that we’re interested in too at Medical Humanities. And we hope that you will join us for more work here and also for future podcasts.
Clare, any parting words you’d like to leave us with before we sign off for today?
BARKER: Thank you for listening. And I hope people, readers find the issue kind of illuminating and fascinating. And I do feel like there’s a wave of work beginning on this kind of topic now. So, it’s just gonna be very interesting to see what directions that is taken in, in the future. So, yeah, thanks very much for listening.
SCHILLACE: Thank you for being on. And again, thank you for joining us, all of you, for being part of the conversation at Medical Humanities.