{"id":23053,"date":"2012-05-12T18:02:14","date_gmt":"2012-05-12T18:02:14","guid":{"rendered":"http:\/\/www.mixedracestudies.org\/wordpress\/?p=23053"},"modified":"2015-03-25T20:18:33","modified_gmt":"2015-03-25T20:18:33","slug":"blood-and-stories-how-genomics-is-rewriting-race-medicine-and-human-history","status":"publish","type":"post","link":"https:\/\/mixedracestudies.org\/wp\/?p=23053","title":{"rendered":"Blood and stories: how genomics is rewriting race, medicine and human history"},"content":{"rendered":"

Blood and stories: how genomics is rewriting race, medicine and human history<\/a><\/em><\/strong><\/p>\n

Patterns of Prejudice<\/a>
\nVolume 40, Numbers 4\u0001\/5<\/a> (2006), Special Issue: Race and Contemporary Medicine
\npages 303-333
\nDOI: 10.1080\/00313220601020064<\/a><\/p>\n

Priscilla Wald<\/a><\/strong>, Professor of English and Women’s Studies
\nDuke University<\/em><\/p>\n

In 2003 Howard University announced its intention to create a databank of the DNA of African Americans, most of whom were patients in their medical centre. Proponents of the decision invoked the routine exclusion of African Americans from research that would give them access to the most up-to-date medical technologies and treatments. They argued that this databank would rectify such exclusions. Opponents argued that such a move tacitly affirmed the biological (genetic) basis of race that had long fuelled racism as well as that the potential costs were not worth the uncertain benefits.<\/strong> Howard University’s controversial decision emerges from research in genomic medicine that has added new urgency to the question of the relationship between science and racism. This relationship is the topic of Wald’s essay. Scientific disagreements over the relative usefulness of \u2018race\u2019 as a classification in genomic medical research have been obscured by charges of racism and political correctness. The question takes us to the assumptions of population genomics that inform the medical research, and Wald turns to the Human Genome Diversity Project<\/a>, the new Genographics Project<\/a> and the 2003 film Journey of Man<\/em> to consider how racism typically inheres not in the intentions of researchers, but in the language, images and stories through which scientists, journalists and the public inevitably interpret information. Wald demonstrates the importance of understanding those stories as inseparable from scientific and medical research. Her central argument is that if we understand the power of the stories we can better understand the debates surrounding race and genomic medicine, which, in turn, can help us make better ethical and policy decisions and be useful in the practices of science and medicine.<\/strong><\/p>\n

To understand how genomic research can reproduce racism, it is necessary to understand how racism is articulated through that research as it is practised in the context of particular social formations. The articulation is produced through stories of race and genomic research, which take many forms as they make their way from the scientific community to the general public. Stories about the research reach public consciousness through such controversial decisions as the NHGC databank as well as through the discoveries and innovations emerging from the labs of pharmaceutical companies, universities and federal institutions. Accounts of genomic research offer exciting promises, ranging from new explanations (and treatments) for some of the most feared medical problems, from cancer to avian flu, to new ways of understanding (and managing) human behaviour. They also capture the public imagination with claims of new discoveries that offer insight into the mysteries of human origins and human history, and the genealogies of individuals as well as groups. The claims and promises fuse in the stories of genomic research broadcast in the mainstream media, and they in turn influence policy and funding decisions and help to shape future research. These stories are fundamental in the production of scientific and medical knowledge and, therefore, as I argue in what follows, attention to them needs to be incorporated into scientific and medical research.<\/p>\n

…Genomic information is notoriously difficult to interpret even by researchers in the field. The frequency of alleles that mark genetic drift\u2014the the rate of genetic changes resulting from mutations, or divergent alleles, in relatively inbred populations\u2014tells where and when there was a divergence within a group. Those alleles are used to mark ancestry. But, as Michael J. Bamshad and Steve E. Olson note, \u2018how groups are divided depends on which genes are examined; simplistically put, you might fit into one group based on your skin-color genes but another based on a different characteristic\u2019. \u00a0The DNA that yields information about one\u2019s ancestry\u2014typically mitochondrial and Y-chromosome DNA\u2014in fact tells only part of the story of genetic ancestry. The complexity of nuclear DNA does not yield sufficiently clear information to complete it. Moreover, as Jay Kaufman has pointed out, Risch et al. \u2019s study relies on the dismissal of \u2018intermediate groups\u2019, such as \u2018Hispanic Americans\u2019, whom Risch et al.<\/em> acknowledge could \u2018aggregate genetically with Caucasians, Native Americans, African Americans or form their own cluster\u2019 and are therefore \u2018not easily classified\u2019, but the size of those groups attenuates their claims. They are too large to be dismissed as an exception. Intermixture is increasingly the rule…<\/p>\n

…Pointing an accusatory finger at \u2018political correctness\u2019 not only deflects the scientific dispute, but also ignores the medical importance of the social consequences of racism, measured in health outcomes. Drawing a stark contrast between medical science and social concerns, a distinction that Risch et al.<\/em> \u2019s article itself troubles, that accusation renders social concerns suspect except as they provide epidemiologically useful information. Neither Wade nor Risch et al . address what constitutes epidemiologically useful information. Risch et al. dismiss potential abuses of genomic information (such as those that fuel racism) as unscientific, arguing<\/p>\n

that identifying genetic differences between races and ethnic groups, be they for random genetic markers, genes that lead to disease susceptibility or variation in drug response, is scientifically appropriate. What is not scientific is a value system attached to any such findings.<\/p><\/blockquote>\n

But this assertion presumes that science and medicine can be divorced from their social contexts and that information circulates in value-neutral terms. History does not support that presumption, and calling racism \u2018not scientific\u2019 does not address the value system or alleviate the problems\u2014including health outcomes\u2014associated with it…<\/p>\n

…Taking racism into account does not mean refusing to collect and classify data in medical research according to race and ethnicity. On the contrary, those classifications provide important epidemiological information, as Risch et al.<\/em> maintain, about the impact of social and environmental factors\u2014including socio-economic inequities and cultural biases\u2014on the health of individuals and groups. As Troy Duster<\/a> argues, the way to \u2018recognize, engage, and clarify the complexity of the interaction between any taxonomies of race and biological, neurophysiological, society, and health outcomes\u2019 is to consider \u2018how science studies deploy the concept of race\u2019. The story of how biotechnology is revolutionizing medicine has put genomic research very much into public consciousness and has made genetic explanations of health disparities among individuals and especially groups the \u2018default position\u2019. Distinguishing between genomic and social and environmental factors in disease susceptibility and drug response is notoriously difficult, especially since, as Keita et al.<\/em> note, \u2018some environmental influences can be so subtle and occur so early in life as to be missed . . . \u2019. Yet, that distinction determines how researchers and practitioners understand and address the problem of health disparities. \u2018Race\u2019 and \u2018ethnicity\u2019 are very different as surrogates for genomics and for social and environmental factors in the assessment of health outcomes, which is why the larger stories in which the research is embedded are scientifically and medically as well as socially relevant…<\/p><\/blockquote>\n

Read the entire article here<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

Blood and stories: how genomics is rewriting race, medicine and human history Patterns of Prejudice Volume 40, Numbers 4\u0001\/5 (2006), Special Issue: Race and Contemporary Medicine pages 303-333 DOI: 10.1080\/00313220601020064 Priscilla Wald, Professor of English and Women’s Studies Duke University In 2003 Howard University announced its intention to create a databank of the DNA of […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12,2039,8,26],"tags":[6463,10714],"class_list":["post-23053","post","type-post","status-publish","format-standard","hentry","category-articles","category-health-medicine","category-media-archive","category-politics","tag-patterns-of-prejudice","tag-priscilla-wald"],"_links":{"self":[{"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=\/wp\/v2\/posts\/23053","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=23053"}],"version-history":[{"count":0,"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=\/wp\/v2\/posts\/23053\/revisions"}],"wp:attachment":[{"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=23053"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=23053"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/mixedracestudies.org\/wp\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=23053"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}