Nutrigenomics, Popular Representations and the Reification of Race?

Nutrigenomics, Popular Representations and the Reification of “Race”? Timothy Caulfield I. Introduction The concept of “race” has long been controver...
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Nutrigenomics, Popular Representations and the Reification of “Race”? Timothy Caulfield

I. Introduction The concept of “race” has long been controversial. Not only is it a profoundly socially divisive notion, its relevance to the biomedical research community remains contested. Few in the scientific community would claim that the centuries old, socially constructed categories of race – such as black, white, Asian – have true biological significance. The human species cannot be categorized along clear biological demarcations. Indeed, we humans are a remarkable genetically homogenous lot. And the more we learn about the subtle genetic variations that make each of us biologically unique, the more it seems that the social concept of “race” is a biological fiction.1 That said, there are, no doubt, subtle and identifiable genetic differences between discrete populations based on geographic origin. Understanding these differences can facilitate genetic research and, ultimately, disease treatment and prevention. And an exploration of difference does not lead, inextricably, to social dilemmas. As noted by one scientist: “Depending on how we use this information, the potential exists to describe simultaneously our similarities and differences without reaffirming old prejudices.”2 But it is easy to slip from a discussion of genetic variation between populations to the use of the biologically crude and politically and historically complex notion of race. As such, researchers, clinicians and entities that provide genetic services to the public must be careful how they communicate genetic information. In this paper, I explore the concept of race in the context of the emerging field of nutrigenomics. It has been said that

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“the assumption of real genetic markers that distinguish one ethnic group from another is at the philosophical heart of nutrigenomics.”3 Given this perspective, might the marketing of nutrigenomic services and products facilitate the relegitimization of race as a biological concept?4

II. Nutrigenomics, Genetics and Race The current value of nutrigenomic testing has been questioned by many, including the popular press,5 some in the scientific community,6 government agencies,7 and non-governmental organizations. Despite this apprehension, some companies already market nutrigenomic tests directly to the public and more will likely follow.8 The business strategy for these companies varies, but many already offer nutrigenomic testing to the public. As suggested on one company’s website, the aim of testing is to provide “personalized health and nutrition recommendations based on an individual’s diet, lifestyle and unique genetic profile.”9 The website for this company goes on to suggest that nutrigenomic testing will help the public develop a “gene-based road map to health.”10 As part of the marketing of nutrigenomic testing, it seems likely or even inevitable that race will be used, either explicitly or implicitly, as a marketing tool.11 The scientific literature that surrounds nutrigenomics often refers to populations from “Africa, Asia, and Europe.”12 At least one genetic testing company, DNA Direct, already advertises on their website for testing based on ethnic risk.13 This is because the

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genetic variations that may cause individuals to metabolize food differently can roughly correspond to the broad social categories of race. Most Northern Europeans, for instance, can drink milk while many from Southeast Asian cannot.14 This kind of geographically based variation can be found in other areas of genetic research, such as pharmacogenomics.15 Indeed, many of the emerging large-scale population studies are specifically designed to identify gene variations within and between sub-populations.16 It is hoped that this research will lead to an understanding of how members of certain sub-populations may have genetic characteristics relevant to health; be it a predisposition to certain diseases, the capacity to respond more effectively to a certain pharmaceutical, or the As part of ability to metabolize caffeine in a particular manner.17

A true understanding of disease risk requires a thorough examination of root causes. ‘Race’ and ‘ethnicity’ are poorly defined terms that serve as flawed surrogates for multiple environmental and genetic factors in disease causation, including ancestral geographic origins, socioeconomic status, education, and access to health care.19

Even commentators who put more stock in the belief that genetic variation and some disease predispositions correspond, however roughly, to social notions of race concede that a “[d]issection of disparities among racial and ethnic the marketing groups is complicated by the strong correlation between the of nutrigenomic testing, it socioenvironmental and genetic factors that differentiate these seems likely or even inevitable groups, with few persons differentially classified.”20 that race will be used, either

As many commentators note, however, it would be a mistake to conclude that the identification of relevant genetic variation explicitly or implicitly, as a Nevertheless, it is easy to slip between populations will prointo the use of race as a surrogate vide evidence of true biologimarketing tool. for genetics, particularly when cal differences between “races”. much of the public health literaBy “races,” I mean the social ture already uses the concept of categories that are largely built race (for example, in the obesity around visual phenotypes like literature21). The term has both skin colour and that have been cultural currency and a degree of academic legitimacy as a used to define racial groups for centuries. The sub-populaway to group populations. As such, when explaining how tions with identified genetic variations relevant to health may genetic variation occurs between populations, using already fall under this broad social construct, but the genetic facts existing (albeit biologically questionable) categories is an are invariably tremendously complex. First, many commenunderstandable tendency. But this is often, if not always, a tators have noted that the social category of race has little mistake.22 biological relevance. Allan Goodman notes as follows: [H]uman biological variation is continuous, complex and ever changing .… race is inherently unable to explain the complex and changing structure of human biological variation .… individuals will always fail to fit neatly into racial box. Moreover, the placement of an individual in a given box says little about his or her biology: the racial mean is meaningless.18 Second, and perhaps more important for nutrigenomics, the social category of race is not even a good proxy for more biologically meaningful genotypic variation. Francis Collins notes this in his critique of the use of race in genetic research:

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III. Popular Representation, Market Forces and Race The concern that the social construct of race will be legitimized through simplified messaging is heightened when one considers the potential impact of market forces in this context. First, it is natural for the industry to push toward bigger markets. “Race” is a broader cohort as compared to a genotypically or geographically defined sub-population, especially since it might capture individuals who identify with a particular racial or ethnic group for which they are only marginally genetically related. Also, because many so-

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cial structures remain wedded to racial constructs, the tools of commercialization (e.g. patenting and market segmentation) seem likely to gravitate toward existing racial categorization – such as obtaining a patent for a product for a particular “race”. Second, race is a powerful cultural image. It would undoubtedly be challenging to market to sub-populations. For example, there is more promotional currency in the term “Black” than in “Western African”. Third, and perhaps most controversial, is the fact that the very communities that might be adversely affected by a biological reification of race may nevertheless embrace the language of race and perceive the genetic service or product as helping to alleviate health disparities.

“would like to see the name BiDil as common in our community as Viagra is in the general public.”28 The popular press also picked up the race message. For example, a headline in the Chicago Sun-Times asserted that “[u]sing race and ethnicity to improve health care is anything but racist” and the accompanying article argued “it would be wrong not to use the clues -- including those linked to race and ethnicity -- that researchers and physicians have now to guide them in providing the best possible medical care for their patients.”29 The Edmonton Journal ran a story titled “Heart medication for African-Americans step towards ‘personalized medicine’.”30 And a piece in Men’s Health magazine had the provocative title “Discriminatinaccurate ing Drug.”31

A brief exploration of how the commercial interests influenced ... biologically the presentation and marketing representations of race, of BiDil serves as an interesting case study. BiDil is the first FDA To be fair, many of the articles particularly through marketing approved “ethnic drug”, one that in the popular press do touch on strategies, could reinforce is meant to help prevent heart the controversy associated with disease in “black” Americans. the use of “race” in this context, destructive racial attitudes It has an interesting and conthus giving balance to the preby promoting “racialized troversial history.23 The clinical sentation of issues. A story in trials that led to its development the Washington Post explores notions of biology. and FDA approval have been the emerging area of ethnically criticized as being incomplete targeted therapies, and notes and far from conclusive regardthat “while race may be an iming the drug’s exclusive effecprecise measure of people’s getiveness among “blacks”. Moreover, it has been noted that netic reaction to drugs, it is the best proxy for such a corcommerce and patent law may have been the dominant morelation available now.”32 That article also quoted Richard tivational factors in the drug’s development rather than the A. Cooper, Chairman of the Preventative Medicine and desire to address long standing health disparities between Epidemiology Department at Loyola University, as saying, ethnic groups.24 Pamela Sankar and Jonathan Kahn go so far “I think it’s just bizarre, marketing a drug just to people as to suggest that “[r]ace apparently became relevant only who are black. The scientific evidence supporting the nowhen it offered a means to revive the commercial prospects tion that there’s a differential response in race is weak or of BiDil.”25 nonexistent.”33 Despite these criticisms, which are not universally shared,26 the product was largely embraced as the first “ethnic drug” and as a positive step toward “personalized medicine.”27 Its introduction mobilized advocacy organizations that represent the very groups to which the pharmaceutical is marketed. For example, notwithstanding the controversy surrounding the research behind BiDil and concerns about deterministic representations of race, the National Association for the Advancement of Colored People (NAACP) embraced the drug as a way to lessen health disparities for disadvantaged groups. Juan Cofield, the president of the New England chapter of the NAACP, went so far as to say that he

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But, to a large degree, the popular press uncritically accepts the legitimacy of “race” as a biological category.34 Indeed, the BiDil experience demonstrates how commercial forces can help to create a message that the press then transmits to the public.35 Jonathan Kahn, who has thoroughly analysed the BiDil story, suggests: “Both the general news media and a number of science and medical journals have covered BiDil extensively without any substantial effort to investigate the claims made in press releases and medical reports.”36 He goes on to suggest there was, in fact, “an imprudent reliance on erroneous or incomplete statistical data”37 and that “[a]t the most basic level, it turns out that BiDil became an

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ethnic drug through the interventions of law and commerce as much as through medical understanding of biological differences that correlate with racial groups.”38 Of course, considerations of race and ethnicity in marketing are hardly new.39 For example, race has been used aggressively in tobacco and alcohol campaigns.40 One study of alcohol and cigarette billboards found that “black neighborhoods had the highest rate of billboards per 1000 population.”41 This type of “niche” marketing may become more common in the health care context. At a recent biotechnology conference, an executive from a pharmaceutical company “emphasized that developing drugs for underserved populations such as Blacks and Hispanics ‘makes good business sense’, as these populations have been largely untapped by the pharmaceutical industry.”42 Race-based, niche marketing engages a myriad of social issues, including the potential exploitation of disadvantaged populations.43 In the context of nutrigenomics, however, the challenges are somewhat different. Not only is niche marketing – in this case, marketing to socially identified racial groups – likely to happen (it seems a natural consequence of market forces), it will be accompanied by a veil of scientific legitimacy. Not only are the products marketed to a particular group, the products are premised on the notion that the group is genetically distinct, thus scientifically justifying the classification of the group.44 In addition, unlike other genetics services, such as diagnostic tests and pharmacogenomic drugs, nutrigenomics does not require a physician intermediary. Consumers will be asked to self identify as being part of a particular racial or ethnic category.45

IV. Policy Concerns First, and perhaps most important, biologically inaccurate representations of race, particularly through marketing strategies, could reinforce destructive racial attitudes by promoting “racialized notions of biology.”46 There are some preliminary data that lend support to this concern. Celeste Condit and colleagues found that “some messages linking race, genes, and health produce increases in racist attitudes in some audiences.”47 However, the public reaction to racebased messages is complex. Benjamin Bates and colleagues did a focus group study exploring reactions to race-based advertising of a new pharmacogenomic drug designed for African Americans.48 A plurality of responses emerged, including acceptance of the message as confirming the genetic difference of “races” and resistance to the racial message

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(fostered, in large part, by concern that it would increase discriminatory attitudes).49 In total, the authors recommend caution in the use of race-based messaging because of the potential to legitimize, or “naturalize”, racial differences: As a common practice, however, race-based genomics may naturalize phenotypic distinctions as differences that matter. Because of this naturalization, some practitioners fear that applied pharmacogenomics may sustain or encourage racism in other arenas. Any benefit that applied genomics has in the lab may be outweighed by its practice in the clinic and in society as a topic of invention by advocates of fundamental racial differences.50 Second, because race is a poor surrogate for genotypic difference, its use could lead to poor health decisions and outcomes. This concern has already been noted in the field of pharmacogenomics, but the sentiments apply equally to nutrigenomics. For example, Sandra Soo-Jin Lee notes: “The conflation of race with genetics opens the door to prejudice, racial stereotyping, and overly simplistic conceptualization of pharmacogenomic interactions, which could ultimately lead to poor health care.”51 More globally, by emphasizing genetic difference between “races” in the context of disease, we run the risk that “groups will be seen as inherently biologically inferior to groups who enjoy better health.”52 This, in turn, may lead to both stigmatization by health care systems and a fatalistic response by the groups so categorized. Third, an overemphasis on the genetics of race and ethnicity could divert research efforts from more fruitful research topics, such as the impact of socioeconomic factors and the availability of healthy food choices. This is not to say that nutrigenomic research is not worthwhile, but to caution that the framing of the research can impact its social utility. As Mildred Cho observes: “[R]eliance on racial and ethnic categories distracts from information that might actually be more relevant to research, diagnosis, or therapy, such as environmental factors of finer-grained differences in ancestral origins than the crude grouping of ‘race’.”53

V. Conclusion Responding to these social dilemmas will not be easy. The concept of race has been embedded in our culture for centuries. When representing or discussing genetic variation between populations, the reflexive response of the market

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and the popular press is, understandably, to turn to the language of race. But using the existing social categories of race in this context is both inaccurate and potentially problematic. Given that more and more genetic services will be made publicly available, research is needed to illuminate the nature and potential impact of the popular representations – be they marketing strategies, policy documents or media articles.

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More challenging will be the development of policy strategies to counter any identified concerns. At a minimum, there is a need for clarity of terms. Researchers use the category of “race” in various capacities (e.g. to refer to both the broad social construct and a quite specific geographic origin).54 But given the contested and complex nature of the term “race”, it appears ill-suited for genomic research. It is a loaded concept that means different things to different people. Beyond initiatives that encourage the use of more precise language, regulatory options may be relatively limited. In liberal democracies, the degree to which society can – and should – control the use of language, speech and public representations is a controversial topic.

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9. Timothy Caulfield is Canada Research Chair in Health Law and Policy, Professor, Faculty of Law and School of Public Health, Research Director, Health Law Institute, University of Alberta. Thanks to Simrat Harry, Victor Alfonso and Nola Ries for their valuable insight and research assistance. Funding support is acknowledged from the Network of Centres of Excellence for Advanced Foods & Materials (www.afmnet.ca) and Genome Alberta.

10. 11. 1. Kelly Owens & Mary-Claire King, “Genomic Views of Human History” (1999) 286 Science 451 at 453, who note that the existing racial categories are not “consistent with genetic evidence.” See also Neil Pearce et al., “Genetics, Race, Ethnicity, and Health” (2004) 328 British Medical Journal 1070. 2. Charles N. Rotimi, “Are Medical and Non-medical Uses of Large-scale Genomic Markers Conflating Genetics and ‘Race’?” (2004) 36 Nature Genetics S43 at S43. 3. Bruce Grierson, “What your genes want you to eat” New York Times (4 May 2003) 76 at 77. 4. See Allan H. Goodman, “Why Genes Don’t Count (for Racial Differences in Health)” (2000) 90 American Journal of Public Health 1699 at 1699: “Accep-

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12. 13.

14.

tance of the notion of race-as-biology declined in anthropology throughout the late 1970s and early 1980s. Yet, during the past decade, racialized notions of biology have made a comeback. This is especially true in human genetics, a field that, paradoxically, once drove the last nail into the coffin of race-as-biology.” Hayley Mick, “Personal genetic test: genius or bogus?” Globe and Mail (26 April 2007) L10. Susanne B. Haga, Muin J. Khoury & Wylie Burke, “Genomic Profiling to Promote a Healthy Lifestyle: Not Ready for Prime Time” (2003) 34 Nature Reviews Genetics 347; Gene Russo, “Home Health Tests are ‘Genetic Horoscopes’” (2006) 442 Nature 497. U.S. Government Accountability Office, Nutrigenetic Testing: Tests Purchased from Four Web Sites Mislead Consumers (GAO-06-977T) (Washington, D.C.: U.S. Government Accountability Office, 2006), online: U.S. Government Accountability Office . Ruth M. Debusk et al., “Nutritional Genomics in Practice: Where Do We Begin?” (2005) 105 Journal of American Dietetic Association 589. About Sciona, online: Sciona . For a more scientific definition of nutrigenomics see Jim Kaput et al., “The Case for Strategic International Alliances to Harness Nutritional Genomics for Public and Personal Health” (2005) 94 British Journal of Nutrition 623 at 623: “The study of how genes and gene products interact with dietary chemicals to alter phenotype and, conversely, how genes and their products metabolize nutrients is called nutritional genomics or ‘nutrigenomics’.” Online, Mycellf, The Science of You . See e.g.: “Nutrigenomics is already being applied in the nutriceuticals industry, which produces dietary products customized to fit the needs of specific human populations based on race, gender, or a specific genetic polymorphism.” James Netterwald, “What Color is your Omic?” Drug Discovery and Development (1 April 2007), online: Drug Discovery and Development Magazine . Kaput et al., supra note 9 at 624. See DNA Direct, Ethnic Risks, online: DNA Direct . See Grierson, supra note 3; See also Lynnette R. Ferguson & Martin Philpott “New Zealand – Fertile Ground for Functional Food Nutrigenomics” (2003)

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15.

16.

17.

18.

1 Nutritional Genomics & Functional Foods 1 at 3: 93% of New Zealand Polynesians have a rapid acetylator phenotype, 40% of Europeans have it, people with this phenotype and that eat more well-cooked red meat are at a significantly higher risk of colon cancer. Morris W. Foster, Richard R. Sharp & John Mulvihill, “Pharmacogenetics, Race, and Ethnicity: Social Identities and Individualized Medical Care” (2001) 23 Therapeutic Drug Monitoring 232 at abstract: “Current uses of social categories in pharmacogenetic research, for example, illustrate how drug development and marketing will perpetuate the use of social categories such as race and ethnicity. Those uses may unintentionally blunt the precision of genetic technologies and pose new threats to socially identifiable populations.” Neil Risch, “Dissecting Racial and Ethnic Differences” (2006) 354 New Eng. J. Med. 408 at 408: “It is well known that disease does not affect the population equally. Assessing variation in the rates of disease according to demographic factors such as sex and race or ethnicity is the basis of epidemiologic research and affects clinical and public health practice. The basis for such differences – in particular, among self-identified racial and ethnic groups – has recently been the focus of heightened discussion.” Denise Mann, “Study: Coffee may trigger heart attack” WebMD (15 August 2006), online: CBS News . “That cup of coffee you’re craving might not be such a good idea. Research in the September issue of Epidemiology suggests coffee can trigger a heart attack within an hour in some people” at para. 1. Goodman, supra note 4 at 1699. Goodman bases this conclusion on numerous factors, including the reality that human variation is continuous (e.g. alleles tend to vary gradually, so there are no clear boundaries); human variation is nonconcordant (e.g. traits vary independently of other traits); and within group variation is much greater than variation among “races.” See generally, ibid. See also Morris W. Foster & Richard R. Sharp, “Race, Ethnicity, and Genomics: Social Classifications as Proxies of Biological Heterogeneity” (2002) 12 Genome Research 844 at 847, where it is noted that genetic studies largely rely on self reported membership, which is not biologically accurate. Using ethnic and racial labels can mask significant intra-group variation.

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19. Francis S. Collins, “What We Do and Don’t Know About ‘Race’, ‘Ethnicity’, Genetics and Health at the Dawn of the Genome Era” (2004) 36 Nature Genetics S13 at S13. See also Richard S. Cooper, Jay S. Kaufman & Ryk Ward, “Race and Genomics” (2003) 348 New Eng. J. Med. 1166 at 1166-1167: “[I]t is impossible for race as we recognize it clinically to provide both perfect sensitivity and specificity for the presence of a DNA-sequence variant … if you really need to know whether a patient has a particular genotype, you will have to do the test to find out.” 20. Risch, supra note 16 at 409. 21. Nicole Cossrow & Bonita Falkner, “Race/Ethnic Issues in Obesity and Obesity-Related Comorbidities” (2004) 89 Journal of Clinical Endocrinology & Metabolism 2590. 22. Morris W. Foster & Richard R. Sharp, “Beyond Race: Towards a Whole-Genome Perspective on Human Populations and Genetic Variation” (2004) 5 Nature Reviews Genetics 790 at 790: “[W]hen used to define populations for genetic research, race has the potential to confuse by mistakenly implying biological explanations for socially and historically constructed health disparities.” 23. Jonathan D. Kahn, “How a Drug Becomes ‘Ethnic’: Law, Commerce, and the Production of Racial Categories in Medicine” (2004) 4 Yale Journal of Health Policy, Law and Ethics 1. 24. This is a complex story beyond the scope of this paper. For an excellent review see ibid. 25. Pamela Sankar & Jonathan Khan, “BiDil: Race Medicine or Race Marketing?”(2005), online: Health Affairs W5-455 at W5-457. 26. Gary Puckrein, “BiDil: From Another Vantage Point” (2006) 25 Health Affairs w368. 27. Abdellah S. Daar & Peter A. Singer, “Race: A risk genetics must run” The Globe and Mail (25 June 2005) 7. 28. Dan Devine, “NAACP goes to the grassroots for BiDil” The Boston-Bay State Banner (5 October 2006), online: The Boston-Bay State Banner . 29. Ronald Bailey, “When medicine that discriminates is good: Using race and ethnicity to improve health care is anything but racist” Chicago Sun-Times (18 December 2006) B2.

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30. “Heart medication for African-Americans step towards ‘personalized medicine’” Edmonton Journal (24 June 2005) A4. 31. “Discriminating drug” Men’s Health 19:9 (November 2004) 42. 32. Ariana Eunjung Cha, “Race plays role in new drug trials; Treatment by genetic origin, ethnicity divides medical profession” Washington Post (28 July 2003) A1. See also Carolyn Johnson, “Should medicine be colorblind? Debate erupts over a drug that works better in African-Americans” Boston Globe (24 August 2004), online: Boston Globe “A heart failure drug shown effective in African-Americans stands to become the first ethnically targeted drug, if a Lexington biotechnology firm is successful in its bid for federal approval.” 33. Ibid. 34. To cite just a few examples, a recent story in the Edmonton Journal describes how race has impact on health. The image that accompanies the story, a picture of three hands from difference “races”, emphasizes the message: Chriz Zdeb, “Ethnic link provide clues to health” Edmonton Journal (13 November 2006) D1. Another short feature from Men’s Health magazine is called “Race Relations” and says, “Ask an epidemiologist and he’ll tell you that not all men are created equal. Your race effects your susceptibility to certain conditions.” The story provides a chart that breaks down health risk based on whether you are “Asian, African American, Caucasian or Hispanic.” “Race Relations” Men’s Health 21:6 (July/August 2006) 44. 35. This is a point I have noted elsewhere. See for example Timothy Caulfield, “The Commercialization of Medical and Scientific Reporting” (2005) 1 Public Library of Science Medicine 38. 36. Kahn, supra note 23 at 3. 37. Ibid. 38. Kahn, supra note 23 at 3. 39. Indeed, some companies will help tailor marketing strategies toward racial and ethnic groups. See for example Debra Aho Williamson, “Marketing to African Americans Online” (4 November 2005), online: i Media Connection . See also Cheraine Stanford, “Advertising in Black and White: How and Why Perceptions of Difference Shape Magazine Advertising”,

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40.

41.

42.

43.

44.

45.

46. 47.

48.

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online: (2000) 20:1 Eruditio : . For example, “Fact Sheet: African-American Youth and Alcohol Advertising” The Center on Alcohol Marketing and Youth at Georgetown University, online: The Center on Alcohol Marketing and Youth . D.G. Altman, C. Schooler & M.D. Basil, “Alcohol and Cigarette Advertising on Billboards” (1991) 6 Health Education Research 487 at abstract. Quoted in Sandra Soo-Jin Lee, “Racializing Drug Design: Implications of Pharmacogenomics for Health Disparities” (2005) 95 American Journal of Public Health 2133 at 2136. See also Jenna Schnuer, “DTC Marketers Eye Ethnic Media” (2001) 72:12 Advertising Age 39 at 39: “Industry observers see a more concentrated move by pharmaceutical marketers to reach ethnic groups.” Elise T. Sautter & Nancy A. Oretskin, “Tobacco Targeting: The Ethical Complexity of Marketing to Minorities” (1997) 16 Journal of Business Ethics 1011. This legitimization phenomenon is heightened even further when one considers the fact that patents are being granted to products and processes based on racial difference. “When the federal government grants a patent to an invention that is based on an asserted or implied genetic basis for a particular racial group, it gives the imprimatur of the federal to the construction of race as genetic.” Jonathan Kahn, “Race-ing Patents/Patenting Race: An Emerging Political Geography of Intellectual Property in Biotechnology” (2007) 92 Iowa L. Rev. 353 at 356. The DNA Direct website already does this. For example, they have a list of ethnicities with corresponding recommended genetic tests. Supra note 13. Goodman, supra note 4 at 1699; see also Kahn, supra note 23 at 7. Celeste Condit et al., “Exploration of the Impact of Messages About Genes and Race on Lay Attitudes” (2004) 66 Clinical Genetics 402 at 406. Benjamin R. Bates et al. “Evaluating Direct-to-Consumer Marketing of Race-Based Pharmacogenomics: A Focus Group Study of Public Understandings of Applied Genomic Medication” (2004) 9 Journal of Health Communication 541. For example, see ibid. at 554: “For the participants, race-based genomics becomes another way to practice race-based medicine, not the proper deployment of recent medical findings. Despite efforts to intro-

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50. 51. 52.

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duce the benefits of genetically tailored medicine, in this species of applied genomics race remains the concern, not genetics.” Ibid. at 556. Lee, supra note 42 at 2133. Pamela Sankar et al., “Genetic Research and Health Disparities” (2004) 291 Journal of American Medical Association 2985 at 2988. Mildred K. Cho, “Racial and Ethnic Categories in Biomedical Research: There is no Baby in the Bathwater” (2006) 34 J. L. Med. & Ethics 497 at 497. See

also, Michael J. Fine, Said A. Ibrahim & Stephen B. Thomas, “The Role of Race and Genetics in Health Disparities Research” (2005) 95 American Journal of Public Health 2125 at 2127: “Few would argue that lack of access to the health care system, poor nutritional status, biased treatment by health care providers, and unsafe living conditions are genetically determined, and few would argue that these factors are unlikely to play a role in health disparities.” 54. See for example, Ferguson & Philpott, supra note 14.

Upcoming Events Regionalization: Lessons Learned or Lessons Lost? Canadian Healthcare Association, Saskatoon, SK, June 2-3, 2008. For more information see: www.healthcareleadershipconference.ca 2008 Health Law Professors Conference American Society of Law, Medicine & Ethics, Philadelphia, PA, June 6-7, 2008. For more information see: www.aslme.org Madness, Citizenship and Social Justice: A Human Rights Conference Simon Fraser University, Vancouver, B.C., June 12-15, 2008. For more information see: www.sfu.ca/madcitizenship-conference/about.htm Family…19th Annual Canadian Bioethics Society Conference St. John’s, NL, June 18-21, 2008. For more information see: www.easternhealth.ca/cbsc2008. Rural Matters: Forging Healthy Canadian Communities Edmonton, AB, July 5-8, 2008. For more information see: www.ruralmatters.ca 5th International Conference on DNA Sampling: The Age of Personal Genomics Banff, AB, September 16-20, 2009. More information coming soon.

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