Blood and stories: How genomics is rewriting race, medicine and human history

Patterns of Prejudice

Volumn 40, Issue 4-5, 2006, Pages 303-333

  Wald, Priscilla ^a  

^a DUKE UNIVERSITY   (United States)

Author keywords

Genetics; Genographics Project; Genomics; Human Genome Diversity Project; Journey of Man; Race; Racism

Indexed keywords

EID: 33845194352     PISSN: 0031322X     EISSN: 14617331     Source Type: Journal    
DOI: 10.1080/00313220601020064     Document Type: Review

References (88)

1. Andrew Pollack, 'DNA of Blacks to be gathered to fight illness', New York Times, 27 May 2003, A1.
2. Ibid.
3. Malcolm Ritter, 'As role of race in research questioned, a DNA databank proposed for Blacks', Associated Press, 19 July 2003.
4. Stuart Hall, 'Race, articulation, and societies structured in dominance', in Philomena Essed and David Theo Goldberg (eds), Race Critical Theories (Oxford: Blackwell 2002), 38-68 (57).
5. Ari Patrinos, '"Race" and the human genome' (Sponsor's Foreword), Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S1-S2 (S1).
6. Charmaine D. M. Royal and Georgia M. Dunston, 'Changing the paradigm from "race" to human genome variation', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S5-S7 (S7).
7. Sarah A. Tishkoff and Kenneth K. Kidd, 'Implications of biogeography of human populations for "race" and medicine', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S21-S27 (S25-S26).
8. Joanna L. Mountain and Neil Risch, 'Assessing genetic contributions to phenotypic differences among "racial" and "ethnic" groups', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S48-S53 (S52).
9. Francis S. Collins, 'What we do and don't know about "race," "ethnicity," genetics and health at the dawn of the genome era', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S13-S15 (S13).
10. The difference is most likely a matter of emphasis or even context. Neil Risch, for example, had taken a stronger position on the value of 'race' as a surrogate in a 2002 piece in Genome Biology that I will discuss later in this essay.
11. And Francis Collins is depicted, in a piece in the New York Times Magazine that appeared in October 2004, as advocating, at least in a limited way, the use of 'race' as a surrogate;
12. see Robin Marantz Henig, 'The genome in black and white (and gray)', New York Times Magazine, 10 October 2004, 46-51.
13. For a summary of the field, see Race, Ethnicity and Genetics Working Group, 'The use of racial, ethnic, and ancestral categories in human genetics research', American Journal of Human Genetics, vol. 77, no. 4, October 2005, 519-32,
14. and Celeste Condit, 'How culture and science make race "genetic"', Literature and Medicine, special issue on 'Genomics and the Arts' (forthcoming).
15. For a discussion of how racism structures the debate itself, see especially Alys Eve Weinbaum, 'Coda: gene/alogies for a new millennium', in Wayward Reproductions: Genealogies of Race and Nation in Trans-Atlantic Modern Thought (Durham, NC: Duke University Press 2004), 227-46.
16. Royal and Dunston, 'Changing the paradigm from "race" to human genome variation', S7.
17. Tishkoff and Kidd, 'Implications of biogeography of human populations for "race" and medicine', S26.
18. Lisa Gannett, 'Racism and human genome diversity research: the ethical limits of "population thinking"', Philosophy of Science, vol. 68 (Supplement), September 2001, S479-S492.
19. Of particular note is the debate between Dobzhansky and Frank B. Livingstone published as 'On the non-existence of human races' in Current Anthropology, vol. 3, no. 3, June 1962, 279-81.
20. Here Livingstone proposed that 'race' be abandoned as a term to describe living populations of human beings on the grounds that biological variation among populations 'does not conform to the discrete packages labeled races' (279). 'Race', he argued, is inaccurate, failing both to correspond to genetic variation and to offer a sufficient explanation for that variation. He was particularly interested in the incompatibility between race and natural selection. Livingstone advocated the substitution of 'clines' for 'races', where 'clines' named gradients of genetic variations among groups that resulted from a variety of factors. Dobzhansky rejected Livingstone's premises, arguing for the biological basis of racial differences and locating the problem of defining 'race' in its status as 'a category of biological classification. ... Discovery of races is a biological problem', he explained, while 'naming races is a nomenclatorial problem' (280). Livingstone, in turn, argued both for the inconsistency of Dobzhansky's definitions of 'race' and for the insupportability of his methodology. 'No science can divorce its concepts, definitions, and theories so completely from its subject matter', he contended, 'so that Dobzhansky's dichotomy between biological and nomenclatorial problems is impossible' (280). Despite radical disagreement over the biology of 'race', however, Dobzhansky and Livingstone shared an interest in avoiding both its ambiguities and its dangers by substituting an alternative nomenclature. I have reproduced this debate here both because of its historical importance and because the terms of this disagreement have (strikingly) continued into the present. Carleton S. Coon's The Origins of Races (New York: Alfred A. Knopf 1962) was also an important source in the dissemination of the concept of 'clines'.
21. Like Livingstone and Dobzhansky, he drew on Julian S. Huxley's 'Clines: an auxiliary taxonomic principle', Nature, vol. 142, 1938, 219-20.
22. Gianfranco Biondi and Olga Rickards offer a history of the debate in 'The scientific fallacy of the biological concept of race', Mankind Quarterly, vol. 42, no. 4, Summer 2002, 355-88. The critical responses to their essay in the same issue of the journal exemplify how the terms of Dobzhansky and Livingstone's debate are being reproduced.
23. I make a similar point about the substitution of 'population' for 'race' in Priscilla Wald, 'Future perfect: genes, grammar and geography', New Literary History, vol. 4, no. 31, Autumn 2000, 681-708.
24. S. O. Y. Keita, R. A. Kittles, C. D. M. Royal, G. E. Bonney, P. Furbert-Harris, G. M. Dunston and C. N. Rotimi, 'Conceptualizing human variation', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S17-S20 (S16).
25. Troy Duster, 'Buried alive: the concept of race in science', in Alan H. Goodman, Deborah Heath and M. Susan Lindee (eds), Genetic Nature/Culture: Anthropology and Science beyond the Two-Culture Divide (Berkeley and London: University of California Press 2003), 258-77 (258).
26. Troy Duster, 'Genetic Nature/Culture: Anthropology and Science beyond the Two-Culture Divide Ibid., 259.
27. Richard C. Lewontin, 'The apportionment of human diversity', Evolutionary Biology, vol. 6, 1972, 381-98 (397).
28. Ariana Eunjung Cha, 'Race plays role in new drug trials: treatment by genetic origin, ethnicity divides medical profession', Washington Post, 28 July 2003, A01.
29. Pamela Sankar and Jonathan Kahn, 'BiDil: race medicine or race marketing?', Health Affairs, Web Exclusive, 11 October 2005.
30. An article in the New York Times Magazine in October 2005 helped to publicize both BiDil and the surrounding debate;
31. see Henig, 'The genome in black and white (and gray)'.
32. Sankar and Kahn, 'BiDil';
33. Jonathan Kahn, 'Getting the numbers right: statistical mischief and racial profiling in heart failure research', Perspectives in Biology and Medicine, vol. 46, no. 4, 2003, 473-83.
34. Nicholas Wade, 'Race is seen as real guide to track roots of disease', New York Times, 30 July 2002, F1.
35. Neil Risch, Esteban Burchard, Elad Ziv and Hua Tang, 'Categorization of humans in biomedical research: genes, race and disease', Genome Biology, vol. 3, no. 7, July 2002, 1-12.
36. James F. Wilson, Michael E. Weale, Alice C. Smith, Fiona Gratix, Benjamin Fletcher, Mark G. Thomas, Neil Bradman and David B. Goldstein, 'Population genetic structure of variable drug response', Nature Genetics, vol. 29, no. 3, November 2001, 265-9.
37. Howard L. McLeod, 'Pharmacogenetics: more than skin deep', Nature Genetics, vol. 29, no. 3, November 2001, 247-8 (247).
38. Risch et al., 'Categorization of humans in biomedical research: genes, race and disease', 1.
39. Risch et al., 'Categorization of humans in biomedical research: genes, race and disease', 1.Ibid.
40. Risch et al., 'Categorization of humans in biomedical research: genes, race and disease', Ibid., 4.
41. Risch et al., 'Categorization of humans in biomedical research: genes, race and disease', Ibid., 5.
42. Risch et al., 'Categorization of humans in biomedical research: genes, race and disease', Ibid., 3.
43. Nightline, the American nightly news programme, for example, featured a man who had lived fifty years defining himself as 'black' only to learn, through an ancestry test performed recreationally by DNAPrint Genomics, that his DNA revealed Indo-European, East Asian and American Indian, but no African, roots. Once again, that lineage reflects a focus on particular markers, and does not tell the whole story of genetic inheritance, although such qualifications do not typically reach the general public. Moreover, that particularization of a genetic lineage countermands the claim that 'we are all African under the skin'.
44. Michael J. Bamshad and Steve E. Olson, 'Does race exist?', Scientific American, vol. 289, no. 6, December 2003, 78-85 (78).
45. Risch et al., 'Categorization of humans in biomedical research', 6-7.
46. Jay Kaufman, 'Race and genomic medicine: false premises, false promises', paper given at a symposium on race and genomics, Duke University, Durham, NC, 3 March 2005.
47. Risch et al., 'Categorization of humans in biomedical research', 4.
48. Risch et al., 'Categorization of humans in biomedical research', Ibid., 7.
49. Quoted in Wade, 'Race is seen as real guide to track roots of disease'.
50. Quoted in Wade, 'Race is seen as real guide to track roots of disease'.ibid.
51. Quoted in Wade, 'Race is seen as real guide to track roots of disease. Ibid. In fact, as I have noted, the thorny question of 'race' has been a topic of concern for population geneticists since the inception of the field (see note 15). And the accusation of political pandering has obscured the scientific disagreement from the outset.
52. Quoted in ibid.
53. Ibid.
54. Risch et al., 'Categorization of humans in biomedical research', 11.
55. Duster, 'Buried alive', 259.
56. Keita et al., 'Conceptualizing human variation', S19.
57. Keita et al., 'Conceptualizing human variation', S19.Ibid.
58. The television series Chicago Hope, for example, included an episode about a white woman who was dismissed by medical staff as crazy when she insisted she was suffering from sickle cell disease, but who, when she was finally tested,
59. turned out to be correct. Richard S. Garcia has publicized a similar case of misdiagnosis in 'The misuse of race in medical diagnosis', Chronicle of Higher Education, 9 May 2003, B15.
60. See also Lynn B. Jorde and Stephen P. Wooding, 'Genetic variation, classification and "race"', Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S28-S33.
61. Mountain and Risch, 'Assessing genetic contributions to phenotypic differences among "racial" and "ethnic" groups', S52.
62. Mountain and Risch, 'Assessing genetic contributions to phenotypic differences among "racial" and "ethnic" groups', S52.Ibid.
63. Esteban González Burchard, Elad Ziv, Natasha Coyle, Scarlett Lin Gomez, Hua Tang, Andrew J. Karter, Joanna L. Mountain, Eliseo J. Pérez-Stable, Dean Sheppard and Neil Risch, 'The importance of race and ethnic background in biomedical research and clinical practice', New England Journal of Medicine, vol. 348, no. 12, March 2003, 1170-5.
64. Royal and Dunston, 'Changing the paradigm from "race" to human genome variation', S6.
65. Luigi Luca Cavalli-Sforza, 'Genes, peoples and languages', Scientific American, vol. 265, November 1991, 104-11 (104).
66. Bamshad and Olson, 'Does race exist?'.
67. 'The unexamined population' (Editorial), Nature Genetics, vol. 36, no. 11s (Supplement), November 2004, S3. The claim can be read as a tacit defence of the field of (human) population genomics, in which human genome variation has always been the central focus.
68. Luigi Luca Cavalli-Sforza, 'The Human Genome Diversity Project: past, present and future', Nature Genetics, vol. 6, April 2005, 333-40 (333).
69. Luigi Luca Cavalli-Sforza, 'The Human Genome Diversity Project: past, present and future', Nature Genetics, vol. 6, 2005, 333-40. Ibid.
70. I have written about the response to the HGDP in Wald, 'Future perfect'. The most extensive treatment of the history and critique of the project is Jenny Reardon, Race to the Finish: Identity and Governance in an Age of Genomics (Princeton, NJ and Oxford: Princeton University Press 2004).
71. See also Jonathan Marks, '"We're going to tell these people who they really are": science and relatedness', in Sarah Franklin and Susan McKinnon (eds), Relative Values: Reconfiguring Kinship Studies (Durham, NC: Duke University Press 2001), 355-83
72. and, for a discussion of the arbitrariness of genomic classification, Jonathan Marks, What It Means to Be 98% Chimpanzee: Apes, People, and Their Genes (Berkeley: University of California Press 2002).
73. Cavalli-Sforza, 'The Human Genome Diversity Project', 333.
74. Quoted in Steve E. Olson, 'The genetic archaeology of race', Atlantic Monthly, vol. 287, no. 4, April 2001, 69-74, 76, 78-80 (73).
75. Steve E. Olson, 'The genetic archaeology of race', Atlantic Monthly, Ibid., 80.
76. The earliest organizational opposition came from the Rural Advancement Foundation International (RAFI), a Canadian-based group that had previously concentrated on corporations' exploitation of developing world farmers (Olson, 'The genetic archaeology of race'). Objections to the HGDP and its subsequent incarnations have varied, ranging from a specific critique of the nature of the project to broad-based opposition to genomic research and biotechnology generally in all of their forms. Cavalli-Sforza does not distinguish among the objections, dismissing them all with the explanation: 'There are some people who hate biology.... Or they hate humanity' (quoted in Meredith F. Small, 'First soldier of the gene wars', Archaeology, vol. 59, no. 3, May 2006, 46-51 (51)). My own concern in this essay is with the specific critique of the biocolonialism of the HGDP and its offshoots.
77. IPCB, 'Indigenous people, genes and genetics: what indigenous people should know about biocolonialism. A primer and a resource guide', June 2000, available on the IPCB website at www.ipcb.org/publications/primers/htmls/ipgg. html (viewed 21 July 2006).
78. Reardon, Race to the Finish.
79. IPCB, 'Indigenous people, genes and genetics'.
80. Small, 'First soldier of the gene wars', 51.
81. Spencer Wells, The Journey of Man: A Genetic Odyssey (Princeton, NJ: Princeton University Press 2002), xvi.
82. Spencer Wells, The Journey of Man: A Genetic Odyssey 2002), xvi.Ibid.
83. Craig Venter makes a similar implicit claim in his recent project that retraces Darwin's routes while doing wide-scale genomic sampling of the flora and fauna. I am grateful to Robert Cook-Deegan for his timely and succinct explanation of the possibilities that Wells does not allow, including the possible mobility of the ancestors from whom the individual inherited the allele, the uncertainties of ancestry (unknown liaisons in more recent history between individuals of different ancestry), even new and coincidental mutations. The story Wells tells, in other words, is one among a range of possibilities. A scene in the film that features Wells's meeting with another of his 'missing links', this one from Central Asia, demonstrates the slipperiness of the language. Wells reports his discovery of an 'ancient marker'-or 'spelling mistake'-that chronicles the ancestry of Europeans in Central Asia, which he calls 'the nursery of mankind'. The term 'missing link' superimposes one kind of evolutionary narrative on to another and turns the man in question-not just his ancestor-into the missing link. The use of language in this scene is misleading for viewers unfamiliar with the science. 'Missing link' suggests a prior stage of evolution in common parlance. Wells potentially creates further confusion when he refers to the man as a 'genetic giant in history', as though the accident of his genetic lineage is an achievement. The information his blood gives to the researchers makes him special, and Wells congratulates him repeatedly on his 'very important blood'. Nor does Wells correct him when, in response to his explanation of the 'meaning' of this marker, the man smiles, thanks him and observes, 'that means my blood is pure'. No one with even a passing familiarity with the language of eugenics could fail to hear a chilling resonance in the discussion of the purity of blood, and it is surprising that Wells chose to leave the comment in the film without any correction or explanation.
84. Wells, The Journey of Man, 195.
85. Quoted in 'Indigenous peoples oppose National Geographic & IBM genetic research project that seeks indigenous peoples' DNA', IPCB press release, April 13, 2005, available at www.ipcb.org/issues/human_genetics/htmls/ geno_pr.html (viewed 22 July 2006).
86. It is interesting to consider how this formulation reproduces the ecological concern that the disappearance of the rain forest will result in the loss of plants with important medical properties. 'Indigenous' DNA, in other words, becomes part of the flora and fauna of the disappearing ecosystem.
87. Collins, 'What we do and don't know about "race," "ethnicity," genetics and health at the dawn of the genome era', S14.
88. Collins follows this recommendation with another that calls for researchers to 'assess how the scientific community uses the concepts of race and ethnicity and attempt to remedy situations in which the use of such concepts is misleading or counterproductive' (Collins, 'What we do and don't know about "race," "ethnicity," genetics and health at the dawn of the genome era', ibid., S15). As I have been arguing throughout this essay, such an examination of vocabulary and other representational practices is crucial, but genomic researchers need to understand the problem as more than one of vocabulary and miscommunication. Cultural assumptions and biases are embedded in and perpetuated by the tools of communication, and western societies must be understood as 'cultures' with their own sets of beliefs and practices. The recent move in anthropology that has made it increasingly acceptable to do fieldwork in one's own culture marks an important turn; the laboratories of researchers, in fact, have increasingly become sites for anthropological fieldwork.