{"id":3157,"date":"2021-09-02T10:46:51","date_gmt":"2021-09-02T09:46:51","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=3157"},"modified":"2021-09-02T10:48:02","modified_gmt":"2021-09-02T09:48:02","slug":"clare-barker-global-genetic-fictions","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2021\/09\/02\/clare-barker-global-genetic-fictions\/","title":{"rendered":"Clare Barker: Global Genetic Fictions"},"content":{"rendered":"<p><strong>Podcast with Clare Barker<\/strong><\/p>\n<p>Today\u2019s 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 \u2018mining\u2019 is in a continuum with previous modes of colonialism. Rather than extracting riches from the land or the resources of communities, they\u2019re now kind of looking inside the human body. Listen in for more on this fascinating topic!<\/p>\n<h3><a href=\"https:\/\/soundcloud.com\/bmjpodcasts\/special-issue-on-global-genetic-fictions?in=bmjpodcasts\/sets\/medical-humanities-podcast\"><strong>LISTEN NOW<\/strong><\/a><\/h3>\n<style type=\"text\/css\">\r\n       .errordiv { padding:10px; margin:10px; border: 1px solid #555555;color: #000000;background-color: #f8f8f8; width:500px; }#advanced_iframe {visibility:visible;opacity:1;}#ai-layer-div-advanced_iframe p {height:100%;margin:0;padding:0}<\/style><script type=\"text\/javascript\">  var ai_iframe_width_advanced_iframe = 0;  var ai_iframe_height_advanced_iframe = 0;var aiIsIe8=false;var aiOnloadScrollTop=\"true\";\r\nif (typeof aiReadyCallbacks === 'undefined') {\r\n    var aiReadyCallbacks = [];  \r\n} else if (!(aiReadyCallbacks instanceof Array)) {\r\n    var aiReadyCallbacks = [];\r\n}    function aiShowIframeId(id_iframe) { jQuery(\"#\"+id_iframe).css(\"visibility\", \"visible\");    }    function aiResizeIframeHeight(height) { aiResizeIframeHeight(height,advanced_iframe); }    function aiResizeIframeHeightId(height,width,id) {aiResizeIframeHeightById(id,height);}<\/script><iframe loading=\"lazy\" id=\"advanced_iframe\"  name=\"advanced_iframe\"  src=\"https:\/\/w.soundcloud.com\/player\/?url=https%3A\/\/api.soundcloud.com\/tracks\/1116988651&amp;color=%23ff5500&amp;auto_play=false&amp;hide_related=false&amp;show_comments=true&amp;show_user=true&amp;show_reposts=false&amp;show_teaser=true\"  width=\"100%\"  height=\"166\"  scrolling=\"no\"  frameborder=\"no\"  allowtransparency=\"true\"  allow=\"autoplay\"  style=\";width:100%;height:166;\" ><\/iframe><script type=\"text\/javascript\">var ifrm_advanced_iframe = document.getElementById(\"advanced_iframe\");var hiddenTabsDoneadvanced_iframe = false;\r\nfunction resizeCallbackadvanced_iframe() {}function aiChangeUrl(loc) {}<\/script>\n<p>&nbsp;<\/p>\n<p><em><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-3159\" src=\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-300x200.jpg\" alt=\"Barker, Clare - Global Genetic Fictions\" width=\"300\" height=\"200\" srcset=\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-300x200.jpg 300w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-768x512.jpg 768w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-1536x1024.jpg 1536w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-2048x1365.jpg 2048w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/09\/Barker-Clare-Global-Genetic-Fictions-640x427.jpg 640w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/>Dr Clare Barker is Associate Professor of English Literature (Medical Humanities) at the University of Leeds.\u00a0She is the author of <\/em>Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality <em>(2011) and the co-editor of <\/em><a href=\"https:\/\/www.cambridge.org\/core\/books\/cambridge-companion-to-literature-and-disability\/AB919D5944918503BBB8B4C036FB9450#fndtn-information\">The Cambridge Companion to Literature and Disability <\/a><em>(2017). She has co-edited two special issues of the <\/em>Journal of Literary and Cultural Disability Studies<em>, \u2018Disabling Postcolonialism\u2019 (2010) and \u2018Disability and Indigeneity\u2019 (2013), an issue of <\/em><a href=\"http:\/\/www.movingworlds.net\/volumes\/19\/literature-medicine-health\/\">Moving Worlds: A Journal of Transcultural Writings<\/a><em> on \u2018Literature, Medicine, Health\u2019 (2019), and most recently has guest edited a special issue of <\/em>BMJ Medical Humanities <em>on \u2018Global Genetic Fictions\u2019 (2021). Her current research focuses on Genetics and Biocolonialism in Contemporary Literature and Film.<\/em><\/p>\n<p>&nbsp;<\/p>\n<h3><strong>Transcript<\/strong><\/h3>\n<p>SCHILLACE: Hello and welcome back to the <em>Medical Humanities Podcast<\/em>. I\u2019m Brandy Schillace, Editor in Chief, and today I have with me Dr. Clare Barker. She\u2019s 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 <em>Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality<\/em>. She also has recently edited<em> The Cambridge Companion to Literature and Disability<\/em>. And we\u2019re really pleased to have her with us today because she just was guest editor on a special issue for <em>Medical Humanities<\/em> called <em>Global Genetic Fictions<\/em>. Clare, thank you for being with us.<\/p>\n<p>BARKER: Thanks very much for having me.<\/p>\n<p>SCHILLACE: I wonder if you could tell us, I mean, it\u2019s 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? \u2018Cause, of course, if our listeners don\u2019t know, it takes a long time to put one of these together.<\/p>\n<p>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\u2019s a brilliant novel by the Maori writer Patricia Grace called <em>Baby No-Eyes<\/em>, 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.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>BARKER: And so, I started looking into things like the Human Genome Diversity Project, and that\u2019s, 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?<\/p>\n<p>SCHILLACE: Just to jump, no, just to jump on the back of what you just said there, because I think it\u2019s really important: For those of us who are new to this area, we\u2019ve done a lot of work on Disability Studies and things at <em>Medical Humanities<\/em>.<\/p>\n<p>BARKER: Mmhmm.<\/p>\n<p>SCHILLACE: But specifically, the colonial aspect, the way in which this is a colonizing event, could you say a bit more\u2014I feel like you were kind of moving in that direction\u2014but a bit more about what biocolonialism is and how we\u2019ve come to understand it more recently?<\/p>\n<p>BARKER: Absolutely. Yeah. So, a lot of Indigenous activists and scholars and commentators have started to use the phrase \u201cbiocolonialism\u201d 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\u2019re 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\u2019re talking about kind of genetic research that is being done on Indigenous communities. And I\u2019m saying \u201con\u201d purposely there, not \u201cwith\u201d 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\u2019s in a continuum with previous modes of colonialism. Rather than extracting riches from the land or the resources of communities, they\u2019re now kind of looking inside the human body.<\/p>\n<p>SCHILLACE: Right. And that\u2019s really interesting. It\u2019s very, it\u2019s data mining in a very different kind of context than we\u2019re normally used to thinking.<\/p>\n<p>BARKER: Yeah.<\/p>\n<p>SCHILLACE: But I think that you said \u201con, research on\u201d was being used quite intentionally.<\/p>\n<p>BARKER: Mmhmm.<\/p>\n<p>SCHILLACE: And I think that\u2019s really interesting to point out, because one of the things that we\u2019ve really worked hard to try and do as a medical humanities journal that is also focused on social justice is the concept that you\u2019re supposed to be talking with and hearing from.<\/p>\n<p>BARKER: Yeah, yeah.<\/p>\n<p>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\u2019re talking about some medical humanities, we\u2019re quite, as a medical humanities journal, we\u2019re very history, social sciences, arts, humanities. We\u2019re 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\u2019re 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\u2019ve really amplified the problems therein.<\/p>\n<p>BARKER: Yeah. And I think it\u2019s 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\u2019s 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.<\/p>\n<p>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\u2019s 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\u2019s being done and how we\u2019re getting that knowledge in the first place. So, yeah, that was my point of departure really.<\/p>\n<p>SCHILLACE: Yeah. Well, let\u2019s 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?<\/p>\n<p>BARKER: I organized a symposium a couple of years ago. I was wanting to see who was doing this kind of research, who\u2019s 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\u2019t 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\u2019s a really, it\u2019s a kind of an area that\u2019s really gathering momentum.<\/p>\n<p>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\u2019ve been talking about: biocolonialism, Indigenous literatures. But there\u2019s 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\u2019ve mentioned, there\u2019s fiction and poetry in there, but there\u2019s 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.<\/p>\n<p>SCHILLACE: Now, one of the things that we run into as a great hurdle, I think, at <em>Medical Humanities<\/em> is you want to hear from people who are in all sorts of countries, places you don\u2019t normally hear from, from parts of Asia, from the African continent, from all these different places. At the same time, it\u2019s very difficult when you\u2019re, you know, when all the standards for what\u2019s considered, right, acceptable literature are white and Western.<\/p>\n<p>BARKER: Mmhmm.<\/p>\n<p>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\u2019ve 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?<\/p>\n<p>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&#8230;. I\u2019ve 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\u2019m 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.<\/p>\n<p>SCHILLACE: It\u2019s interesting, isn\u2019t it?<\/p>\n<p>BARKER: Yeah.<\/p>\n<p>SCHILLACE: I mean, it\u2019s not that it isn\u2019t 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, \u201cHow come we\u2019re not seeing more articles coming in from these places?\u201d And I explained that you can\u2019t passively expect them. They haven\u2019t ever been invited. [laughs]<\/p>\n<p>BARKER: Mmhmm.<\/p>\n<p>SCHILLACE: And they\u2019ve been excluded for an awful long time. And so, it\u2019s 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\u2019ve 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\u2019m 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\u2019s 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\u2019re actually, you are hearing from them, but even if it\u2019s not the researchers. So, it\u2019s a really interesting way of kind of trying to get around those problems and those struggles.<\/p>\n<p>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\u2019s 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\u2019s, you know, it\u2019s a mode of science that doesn\u2019t conform to the kind of narrow ways that science is conducted in Western institutions as well. And so, what\u2019s really great about some of the fictions that I\u2019m 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.<\/p>\n<p>SCHILLACE: Yeah. And I bring it up partly because I\u2019m frustrated by the limits myself. I can\u2019t 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\u2019re doing that in a way that is culturally aware [chuckles] and that isn\u2019t just discounting something because you\u2019re like, well, that doesn\u2019t look like it came from Oxford or whatever, you know?<\/p>\n<p>BARKER: Yeah.<\/p>\n<p>SCHILLACE: So, I think I find that that\u2019s a challenge. And I think that\u2019s 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\u2019t 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?<\/p>\n<p>BARKER: Yeah. I think that\u2019s right.<\/p>\n<p>SCHILLACE: And I think that\u2019s new territory.<\/p>\n<p>BARKER: Yeah, and I think we\u2019re using the term \u201cfictions\u201d 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.<\/p>\n<p>So, for example, we\u2019ve 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.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>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.<\/p>\n<p>SCHILLACE: Mmhmm. I find that, that\u2019s absolutely, absolutely true.<\/p>\n<p>And I know we\u2019re 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\u2019t checked out the June special issue, June 2021, special issue of <em>Medical Humanities, Global Genetic Fictions<\/em>, 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\u2019re really keen for you to explore that and check that out.<\/p>\n<p>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\u2019re interested in Indigenous literatures, postcolonialism, genetics, these are all things that we\u2019re interested in too at <em>Medical Humanities<\/em>. And we hope that you will join us for more work here and also for future podcasts.<\/p>\n<p>Clare, any parting words you\u2019d like to leave us with before we sign off for today?<\/p>\n<p>BARKER: Thank you for listening. And I hope people, readers find the issue kind of illuminating and fascinating. And I do feel like there\u2019s a wave of work beginning on this kind of topic now. So, it\u2019s just gonna be very interesting to see what directions that is taken in, in the future. So, yeah, thanks very much for listening.<\/p>\n<p>SCHILLACE: Thank you for being on. And again, thank you for joining us, all of you, for being part of the conversation at <em>Medical Humanities<\/em>.<!--TrendMD v2.4.8--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Podcast with Clare Barker Today\u2019s 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 [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/medical-humanities\/2021\/09\/02\/clare-barker-global-genetic-fictions\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":345,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15029],"tags":[15058],"class_list":["post-3157","post","type-post","status-publish","format-standard","hentry","category-podcasts","tag-podcasts"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Clare Barker: Global Genetic Fictions - Medical Humanities<\/title>\n<meta name=\"description\" content=\"Listen to EIC Brandy Schillace in conversation with Clare Barker, guest editor of this month&#039;s special issue of Medical Humanities on 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