Racial Classification in Assisted Reproduction

Posted in Articles, Health/Medicine/Genetics, Law, Media Archive, United States on 2012-04-12 21:24Z by Steven

Racial Classification in Assisted Reproduction

Yale Law Journal
Volume 118, Issue 8 (June 2009)
pages 1844-1898

Dov Fox, Academic Law Research Fellow
Georgetown University Law Center

This Note considers the moral status of practices that facilitate parental selection of sperm donors according to race. Arguments about intentions and consequences cannot convincingly explain the race-conscious design of donor catalogs. This prompts us to examine the expressive dimension of wrongful discrimination. Even practices marked by innocent motives and benign effects can give reason for pause when they needlessly entrench divisive assumptions about how people of a particular race think or act. Race-based differentiation in voting ballots, dating websites, and donor catalogs helps us to tease out the subtle normative tensions that racial preferences occasion in the contexts of citizenship, romance, and reproduction. These reflections suggest that racially salient forms of donor disclosure are pernicious social practices, which, while operating beyond the reach of the law, ought to be condemned as bad policy. The Note concludes by developing reproductive choice-structuring mechanisms that aim to balance respect for intimacy, autonomy, and expressions of racial identity with responsibility to work against conditions that divide us.

Table of Contents

  • Introduction
  • I. Race and reproduction
    • A. Free Market Sperm Donation
    • B. Race-Conscious Donor Catalogs
  • II. the expressive dimension of racial discrimination
    • A. Discriminatory Intent and Discriminatory Effects
    • B. Discriminatory Expression
  • III. the moral logic of donor classification
    • A. The Social Meaning of Reproducing Race
    • B. The Architecture of Reproductive Choice
  • Conclusion

Introduction

Few choices matter more to us than those we make about the person with whom we will share a life or start a family. When having children involves assisted reproduction, selecting an egg or sperm donor occasions similar gravity. Such decisions typically bring to bear a patchwork of preferences about the particular physique, disposition, or values we find desirable in a romantic or procreative partner. To many, race matters. Just as some people in the search for companionship are looking for a significant other who shares their racial background, many of those who wish to become parents would prefer a child whose racial features resemble their own.

To help those who use donor insemination have a child of a particular race, sperm banks routinely catalog sperm donors on racial grounds. Twenty-three of the twenty-eight sperm banks operating in the United States provide aspiring parents with information about donor skin color, and the largest banks organize sperm donor directories into discrete sections on the basis of race. This practice of race-conscious donor classification invites us to rethink those racial preferences we commonly take for granted within intimate spheres of association. Insofar as race tends to reproduce itself within the family unit, race-conscious donor decisionmaking serves as a promising point of departure from which to ask whether and how our multiracial democracy should seek to preserve or diminish our collective self-identification with racial solidarities.

This Note proceeds in three parts. Part I describes the practice of racial classification by the world’s largest sperm bank. Part II argues that antidiscrimination arguments about bad intentions and bad consequences struggle to make sense of the race-conscious way that sperm banks design donor catalogs and online search functions. This suggests that certain classes of discriminatory behavior require a richer moral vocabulary than traditional frameworks allow. In these cases, we do well to examine what might be called the expressive dimension of wrongful discrimination, which turns on whether a rule or action instantiates public values that characteristically erode worthy forms of social recognition.

Part III works out the social meaning of racial classification in assisted reproduction by reference to similar classifications in the more familiar settings of voting and dating. These analogies help us to tease out the subtle normative tensions that racial preferences occasion in the contexts of citizenship, romance, and reproduction. This Part argues that racial classifications marked by innocent motives and benign effects give reason for pause when they needlessly entrench divisive assumptions about how people of a particular race think or act. These reflections suggest that racially salient forms of donor disclosure are pernicious social practices, which, while operating beyond the reach of the law, ought to be condemned as bad policy. The Note concludes by developing reproductive-choice-structuring mechanisms that aim to balance respect for intimacy, autonomy, and expressions of racial identity with responsibility to work against conditions that divide us.

Read the entire article here.

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The Study of Race

Posted in Anthropology, Articles, Health/Medicine/Genetics, Media Archive on 2012-04-02 17:43Z by Steven

The Study of Race

American Anthropologist
Volume 65, Issue 3 (June 1963)
pages 521-531
DOI: 10.1525/aa.1963.65.3.02a00010

S. L. Washburn, Professor of Anthropology
University of California, Berkeley

Delivered as the Presidential address at the Annual Meeting of the American Anthropological Association, November 16, 1962, in Chicago

The Executive Board has asked me to give my address on the subject of race, and, reluctantly and diffidently, I have agreed to do so. I am not a specialist on this subject. I have never done research on race, but I have taught it for a number of years.

Discussion of the races of man seems to generate endless emotion and confusion. I am under no illusion that this paper can do much to dispel the confusion; it may add to the emotion. The latest information available supports the traditional findings of anthropologists and other social scientists-that there is no scientific basis of any kind for racial discrimination. I think that the way this conclusion has been reached needs to be restated. The continuation of antiquated biological notions in anthropology and the oversimplification of facts weakens the anthropological position. We must realize that great changes have taken place in the study of race over the last 20 years and it is up to us to bring our profession into the forefront of the newer understandings, so that our statements will be authoritative and useful…

…If one were to name a major race, or a primary race, the Bushmen have a far better claim in terms of the archeological record than the Europeans. During the time of glacial advance more than half of the Old World available to man for life was in Africa. The numbers and distributions that we think of as normal and the races whose last results we see today are relics of an earlier and far different time in human history.

There are no three primary races, no three major groups. The idea of three primary races stems from nineteenth-century typology; it is totally misleading to put the black-skinned people of the world together-to put the Australian in the same grouping with the inhabitants of Africa. And there are certainly at least three independent origins of the small, dark people, the Pygmies, and probably more than that. There is no single Pygmy race.

If we look to real history we will always find more than three races, because there are more than three major areas in which the raciation of our species was taking place…

Read the entire article here.

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The Racial Distribution of Nephritis and Hypertension in Panama

Posted in Articles, Caribbean/Latin America, Health/Medicine/Genetics, Media Archive on 2012-04-02 00:29Z by Steven

The Racial Distribution of Nephritis and Hypertension in Panama

The American Journal of Pathology
Volume 21, Number 6 (November 1945)
pages 1031-1046

Carl E. Taylor

In Panama a large scale natural experiment on the pathogenesis of human hypertension awaits scientific interpretation. The studies of Kean and of Marvin and Smith have demonstrated the presence of fairly distinct racial groups, living in contiguity and subjected to similar environmental factors, in which there is a striking difference in the incidence of hypertension. The native Panamanians, originally were Indian, but in the past 300 years there has been added to this stock the blood of Spaniards and other Europeans together with their Negro slaves. This apparently composite ethnologic group is actually fairly clearly defined in language, customs, and appearance. Relatively pureblooded Negroes were imported to Panama from the West Indian Islands for construction work on the Canal 30 to 40 years ago and with their descendants they form another rather distinct group. These racial groups were defined by Kean as follows: ‘A ‘Panamania’ is one born in Panama whose parents were both born in Panama,” and “a ”West Indian’ is a Negro who was either born in the West Indies of West Indian parentage or whose parents both were born in the West Indies.” A third racial group is made up of Caucasians, most of whom are United States citizens.

In examining 1,328 candidates for employment with the Panama Canal, Kean found that hypertension was seven times as common in the West Indians as in the Panamanians; this difference was especially marked in the younger age groups in which the ratio of Negro to Panamanian hypertensive patients ranged as high as 16 to 1. In a group of almost 2,000 pregnant females he found hypertension to be five times as frequent in the West Indians as in the Panamanians. In over 2,000 consecutive hospital admissions Marvin and Smith found that hypertension was about eight times as common in the West Indians as in the Panamanians.

Phillips found a high incidence of hypertension in Negroes in Jamaica. It is the consensus of studies 4-6 of the racial incidence of hypertension in the United States that American Negroes have about twice as much hypertension as whites. Many factors have been considered in attempting to explain this difference. Heredity has been discounted because of Donnison’s report of the relatively low blood pressure found in African Negroes living under primitive conditions. These authors suggested that hypertension in the Negro may be caused in some way by adjustment to a new civilization and a new environment.

Shattuck has reported that the Indians of Guatemala and of Yucatan have relative hypertension and that blood pressure in the mestizo or mixed racial groups was somewhat higher. Kean, in a survey of the relatively isolated Cuna Indians living on the San Blas Islands off the coast of Panama, observed that the average blood pressure of 407 adult Indians was 105mm. of Hg systolic and 69 diastolic; not a single case of hypertension was found.

The generally recognized correlation between hypertension and nephritis suggested that an analysis of the racial distribution of nephritis in Panama might contribute to our understanding of the problem…

Read the entire article here.

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Why race still matters

Posted in Articles, Health/Medicine/Genetics, Media Archive, Philosophy, Politics/Public Policy, United States on 2012-03-25 18:41Z by Steven

Why race still matters

Dædalus
Volume 134, Number 1 (Winter 2005)
Pages 102-116
DOI: 10.1162/0011526053124460

Ian Hacking, Professor of Philosphy
University of Toronto

Why has race mattered in so many times and places? Why does it still matter? Put more precisely, why has there been such a pervasive tendency to apply the category of race and to regard people of different races as essentially different kinds of people? Call this the ‘first question.’ Of course there are many more questions that one must also ask: Why has racial oppression been so ubiquitous? Why racial exploitation? Why racial slavery? Perhaps we lend to think of races as essentially different just because we want to excuse or to justify’ the domination of one race by another.

I shall proceed with the first question by canvassing live possible answers to it that variously invoke nature, genealogy (in the sense of Michel Foucault), cognitive science, empire, and pollution rules.

One final preliminary remark is in order. Most parts of this essay could have been written last year or next year, but the discussion of naturalism, medicine, and race could only have been written in November of 2004. and may well be out of date by the time this piece is printed.

Why has the category of race been so pervasive? One answer says that the distinction is just there, in the world for all to see. Superficial differences between races do exist in nature, and these are readily recognized.

The naturalist agrees at once that the distinctions are less in the nature of things than they once were, thanks to interbreeding among people whose ancestors have come from geographically distinct blocks. Racial distinctions are particularly blurred where one population has been translated by force to live in the midst of another population and yet has not been assimilated—slaves taken from West Africa and planted in the Southern United States, for example. The naturalist notes that traditional racial distinctions are less and less viable the more children are born to parents whose geographical origins are very different.

Sensible naturalists stop there. The belief that racial differences are anything more than superficial is a repugnant. John Stuart Mill was the wisest spokesman for this position…

…In the United States, the National Bone Marrow Program maintains the master registry. Most people in existing registries have tended to be middle-aged and white, which means that whites have a good chance of finding a match. Hence there have been racially targeted programs for Asian and African Americans. In the United States and Canada there is also the Aboriginal Bone Marrow Registries Association, and in the United Kingdom there is the African Caribbean Leukemia Trust. Asians for Miracle Marrow Matches has been very successful, especially in the Los Angeles region. The African Americans Uniting for Life campaign has been less successful, for all sorts of historical reasons. An African American with leukemia has a far worse chance of finding a match in time than members of other populations have. That is a social fact, but there is also a biological fact: there is far greater heterogeneity in the human leukemia antigen in persons of African origins than in other populations. (This fact fits well with the hypothesis that all races are descendants of only one of many African populations that existed at the time that human emigration began out of Africa—populations whose characteristics have continued to be distributed among Africans today.)

If you go to the websites for the organizations that maintain the registries, you will see they do not shilly-shally in some dance of euphemistic political correctness about race. For them it is a matter of life and death. Without the Asian registries there would have been many more dead Asian Americans in the past decade. For lack of more African Americans on the registries there will be more dead African Americans in the next few years than there need be…

…How much more powerful pollution and the imperial imperative become when history puts them together! Pollution rules are important for maintaining the imperial group intact. As soon as pollution rules break down, men of the master group sire children with women from subjugated groups, and a new kind of person–the half-breed–emerges. The etymology of words such as ‘Eurasian’ embodies this phenomenon. We learn from the trusty 1911 Encyclopaedia that ‘Eurasian’ was “originally used to denote children born to Hindu mothers and European (especially Portuguese) fathers.” There are pecking orders between conquerors, as well as among the conquered–and this British word was a put-down meant to keep the Portuguese in Goa in their place. Note also the dominance order between the sexes: a Hindu father and a European woman would yield, at least in the official reckoning, a Hindu, not a Eurasian.

The French noun métis, derived from a Portuguese word originally used for Eurasians, dates back to 1615. In French Canada it signified the children of white fathers and native mothers. Early in the nineteenth century it was adopted in English to denote the offspring of French Canadian men, originally trapper/traders, and native women. In other words, ‘Eurasian’ and métis alike meant the children of males from conquering groups of lower status and females from the totally subjugated groups–and then the offspring of any of those children.

For a few generations, one can be precise in measuring degrees of pollution. At that the Spanish and Portuguese Empires excelled. First came ‘mulattoes,’ the children of Spanish or Portuguese men and South American Indian women. With the importation of black slaves from West Africa, the label was transferred to the children of white masters and black slaves, and then to mixed race in general. The OED [Oxford English Dictionary] says it all: the English word is derived from Portuguese and Spanish, “mulato, young mule, hence one of mixed race.”

The Spanish cuarteron became the English ‘quadroon,’ the child of a white person and a mulatto. The few quotations given in the OED are a record of colonial history. Here is the first, dated 1707: “The inhabitants of Jamaica are for the most part Europeans … who are the Masters, and Indians, Negroes, Mulatos, Alcatrazes, Mestises, Quarterons, & c. who are the slaves.” The next quotation in the list is from Thomas Jefferson.

And so on: from Spanish the English language acquired ‘quintroon,’ meaning one who is one-sixteenth of Negro descent. The 1797 Encyclopaedia Britannica has it that “The children of a white and a quintroon consider themselves free of all taint of the negro race.” More importantly, from an 1835 OED citation, “‘The child of a Quintroon by a white father is free by law.’ Such was recently the West-Indian slave code.” Better to have a white father than a white mother.

In real life, interbreeding was endemic, so such classifications were bound to become haphazard. Only one option was left. The American solution was definitive. One drop of Negro blood sufficed to make one Negro. Which in turn implied that many Americans could make a cultural choice to be black or not, a choice turned into literature in Toni Morrison’s Jazz and, more recently, in Philip Roth’s The Human Stain. The one drop of blood rule perfectly harmonizes the imperial imperative and the preservation of group identity by pollution prohibitions.

Why is there such a widespread tendency to regard people of different races as essentially different kinds of people? That was our first question…

Read the entire article here.

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Racial Aura: Walter Benjamin and the Work of Art in a Biotechnological Age

Posted in Articles, Health/Medicine/Genetics, Literary/Artistic Criticism, Media Archive on 2012-03-24 20:04Z by Steven

Racial Aura: Walter Benjamin and the Work of Art in a Biotechnological Age

Literature and Medicine
Volume 26, Number 1 (Spring 2007) Special Issue: Genomics in Literature, Visual Arts, and Culture
pages 207-239
DOI: 10.1353/lm.2008.0011

Alys Eve Weinbaum, Associate Professor of English
University of Washington

[T]he meaning of racial difference is itself being changed, as the relationship between human beings and nature is reconstructed by the impact of the DNA revolution and of the technological developments that have energized it. . . . [W]e must try to take possession of that profound transformation  and somehow set it to work against the tainted logic that produced it.
Paul Gilroy, Against Race: Imaging Political Culture Beyond the Color Line

In recent years, humanists, scientists, social scientists, and the popular press have argued that race is no longer a biologically meaningful category or concept. In view of recent genetic evidence about inherited traits, scholars and pundits argue, it is clear that the collection of purported essences and phenotypic traits that we have thought about until now and referred to as racial in character cease to index significant genetic differences and thus cease to exist as meaningful biological differences. Such assertions about what may most aptly be dubbed our “post-racial” moment represent the culmination of a larger cross-disciplinary consensus produced in the wake of the eugenics movement in the early years of the twentieth-century and the subsequent genocide of World War II. As the argument goes, nothing less than a move beyond race will enable a race-obsessed society to transcend the reportedly invidious idea of race, which advocates of post-racialism regard as responsible for racism. As critical race theorists such as Michael Omi and Howard Winant explain, the contemporary racial formation is undergirded by a liberal mantra that has proven instrumental in recent decades in dismantling affirmative action and a variety of other race-based social justice programs, the mantra of so-called colorblindness.

In its current incarnation as scientific “fact,” the colorblind position gathers renewed force: a colorblind, nay post-racial society, it is now argued, is achievable by subjecting the idea of race to the blinding light of genetic reason, or perhaps more accurately to gel electrophoresis, the laboratory protocol used to process DNA fragments so that they may be sequenced and analyzed. Indeed, ever since the announcement of the completion of the map of the human genome in June 2000, the case against race more often than not is presented in genetic terms and as definitively closed. As a headline in the New York Times rhetorically queried as early as August 2000, “Do Races Differ? Not Really Genes Show.” By 2003, Scientific American saw fit to announce on its cover that “Science Has the Answer” to the age-old conundrum of racial difference: race has no genetic basis. What concerns me in this article is that even as the hegemony of a colorblind racial project currently being expressed as a post-racial euphoria holds sway, the dominant understanding of race, newly energized by genomics, exists side by side with a culture that continues to renew its commitment to the idea of race through its practice of biotechnology…

…Currently, far from having transcended ideas about the reproducibility of race as a biological essence, we are witnessing consolidation of such ideas through their deepened geneticization and commodification. In infrequent cases in which white women have elected to use sperm from men of different races, their pursuit and purchase of exotic commodities can (though does not always) auger the infinite variety of forms that racism can and does take. Such wayward racial selections are expressly intended to produce interracial children, a (re)productive practice that is ultimately no more or less race conscious than that which aims to create a perfect “racial match.” In fact, even in those cases in which lesbian or queer interracial couples elect to produce mixed race children “reflective” of the racial composition of their relationships, we witness yet one more of the infinite forms that contemporary racial fetishism may take. In the case of surrogacy, when surrogates gestate embryos comprised of their own ova, their services and bodily materials become indistinguishable, and surrogates are thus selected by consumers based on the projected racial and phenotypic outcomes that the surrogates’ employment will enable. Conversely, as anthropologist, Heléna Ragoné demonstrates, in instances in which surrogates gestate unrelated genetic material, the racial differences between the surrogate and social parents are deemed less relevant. Far from contravening the dominant social belief in the genetics of race, this practice only further suggests its power: the race of the surrogate becomes inconsequential when she is reduced to a laboring body, a womb for sale. Once again, the racial connections that count are those that produce the veneer of racial continuity across generations. Apparently, in the context of a supposedly post-racial free market in genetic materials and reproductive services, even multicultural forms of reproductive reciprocity are fraught with eugenic undertones…

…II. Racial Aura

The idea that the same technologies that might potentially be used for liberatory, even anti-racist ends can and are all too often used to maintain oppressive social hierarchies is one whose examination has historical precedent in the 1930s. Amidst the rise of the Third Reich and just prior to the imposition of genocidal Nazi eugenic policies implemented in the name of “racial hygiene” and “race improvement,” Marxist theorist Walter Benjamin sought to understand how the new technologies of reproduction by which he was surrounded were altering both human sense perception and political consciousness. Although Benjamin’s now famous essay, “The Work of Art in the Age of Mechanical Reproduction,” examined film and photography and could not possibly have accounted for ARTs [assisted reproductive technologies] as they exist today, in this section I explore how and why Benjamin’s analysis of the cultural and ideological effects of the reproductive technologies by which he was surrounded is relevant to the analysis of the biotechnologies by which we are surrounded in our supposedly post-racial age. Although we can limn the paradox that confronts us—the simultaneous insistence on the obsolescence of race and the accelerated practice of racial distinction through the use of biotechnology—in order to theorize this paradox and, as importantly, to understand how it produces an array of cultural and ideological effects that alter our perception of race, reproduction, and kinship, a return to Benjamin is both timely and politically useful….

…In these and all his other portraits of the court, Lee’s racialized and animalized images put racial aura on display in the form of nineteenth century “scientific” ideas about hybridization and destruction of “purity” of form. In this way Lee’s images indicate the extent to which all modern discussions of hybridity are intrinsically racialized, whether or not race is explicitly foregrounded, for, by the middle of the nineteenth century, ideas about mixed progeny as “degenerate” and about “degeneration” as a consequence of “devolution” to a more animalized and, thus, less “civilized” and less “human” state were commonplace. Indeed, Lee’s work reminds us that in the largely uncontested “racial science” of the nineteenth century (that which preceded Davenport’s eugenic theories and from which he borrowed), ideas about racial mixing were sifted through ideas about the hybridization of species—human and non-human animals—such that interspecism and interracialism were virtually interchangeable. This was an especially powerful conflation in contexts such as American racial slavery, in which black people were regarded as less than fully human, as animal chattel. As the etymology of the term “Mulatto” indicates, rooted as it is in the word mule, the progeny of wayward reproductions across racial lines have a long history of portrayal as sterile beings, inferior blends of incompatible parts, be they donkey and horse or white and black.

In Lee’s images the monstrosity of mixture realizes its most robust expression in cross-species human/non-human animal mixture. However, lest the contemporary genomic resonance of Lee’s human/non-human animal hybrids be overlooked by viewers, in the gallery space in which Lee’s Judgment series was on display, his work was juxtaposed by curators with Catherine Chalmer’s photographic series Transgenic Mice [See Figure 4]. Chalmer’s portraits of creatures such as “Obese Mouse” and “Rhino Mouse,” blown-up so they appear the size of toddlers, depict actual scientific specimens produced by combining human DNA with mouse DNA. Such mice are used in research on a variety of human diseases, with the most well known one, “Onco-Mouse,” developed to study cancer. Although race is nowhere apparent in the manifest content of Chalmer’s images, the juxtaposition of Lee’s and Chalmer’s hybrids produces a synergy that racializes the mice and simultaneously geneticizes the hybrids that comprise Lee’s court. In other words, when brought together, Lee’s court and Chalmer’s mice manifest racial aura in the form of overlapping conceptions of mixture as monstrosity. By grabbing our attention and fascinating our gaze, these very different portraits collude to reveal the origin of the freakishness they depict in a combination of old, supposedly outmoded ideas about racial mixture and very contemporary ideas of transgenics—and this is the case, even as the post-racial consensus is consolidated by the genetic science that tells us that race does not exist…

Read the entire article here.

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S.66, the Native Hawaiian Health Care Improvement bill in the 112th Congress — Reauthorizing an ineffective but socially dangerous pork-barrel waste of taxpayer dollars

Posted in Articles, Health/Medicine/Genetics, Law, Media Archive, Politics/Public Policy, United States on 2012-03-24 19:25Z by Steven

S.66, the Native Hawaiian Health Care Improvement bill in the 112th Congress — Reauthorizing an ineffective but socially dangerous pork-barrel waste of taxpayer dollars

Hawaii Reporter
2011-03-07

Kenneth R. Conklin, Ph.D.

S.66 is a bill in the 112th Congress entitled “The Native Hawaiian Health Care Improvement Act,” introduced by Senator Dan Inouye on January 15, 2011. At the end of February the bill had no cosponsors—not even the figurehead champion of ethnic Hawaiians, Senator Dan Akaka.
 
The bill’s stated purpose is to re-authorize and expand previous legislation going back to 1988 which established Papa Ola Lokahi, the federally-funded ethnic Hawaiian healthcare system—one of the largest racially exclusionary programs for the benefit of ethnic Hawaiians. (There are more than a thousand Hawaiians-only programs; see “references”).
 
A hidden purpose of S.66 is to restate and enshrine language from the apology resolution of 1993 and the failed Akaka bill of 2000 to 2010. S.66 would thereby bolster the claim that the federal government already recognizes ethnic Hawaiians as an Indian tribe, thus strengthening legal defenses against 14th Amendment challenges to Hawaii’s plethora of racial entitlement programs…

…Some defenders of race-based medicine assert that ethnic Hawaiians are a unique people with unique social customs requiring a culture-based medical delivery system. But nearly all ethnic Hawaiians are of mixed race. They live, work, play, and pray right next to people of other races in Hawaii’s fully integrated multicultural society. Assimilated people don’t have unique social needs as a group, and should not be racially profiled or stereotyped that way. Hawaii has many first, second, or third generation U.S. citizens from countries which do indeed have very different cultures; but there are no demands for federally funded race-based or culture-based healthcare systems to serve them…

Read the entire opinion piece here.

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Are medical and nonmedical uses of large-scale genomic markers conflating genetics and ‘race’?

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy on 2012-03-24 03:04Z by Steven

Are medical and nonmedical uses of large-scale genomic markers conflating genetics and ‘race’?

Nature Genetics
Volume 36, Number 11s (2004)
pages S43-S47
DOI: 10.1038/ng1439

Charles N. Rotimi, Director
Center for Research on Genomics and Global Health

“…with each birth and each death we alter the genetic attributes of human populations and drawing a line around an ephemeral entity like a human race is an exercise in futility and idiocy.” —Pat Shipman, The Evolution of Racism

We now have the tools to describe the pattern of genetic variation across the whole genome and its relationship to the history of human origins and the differential distribution of diseases across populations and geography. We can begin to dissect common complex diseases and devise new therapeutic strategies to reduce adverse drug reactions, a key public health problem ranking between the fourth and sixth leading cause of death in the US. At the social level, the new genomic tools can help us to better appreciate the fluidity of social identity, including ‘race’, ‘ethnicity’ and the more complex notion of ancestry. Challenges surrounding the design of large-scale genotyping projects such as the international HapMap initiative and their future applications illustrate the complexities and ambiguities associated with the use of group labels in genomic research. Depending on how we use this information, the potential exists to describe simultaneously our similarities and differences without reaffirming old prejudices…

…Genetic variation and social identity

To reap the full benefits of the Human Genome Project and spin-offs like the HapMap project, we must be willing to move beyond old and simplistic interpretations of differential frequencies of disease variants by poorly defined social proxies of genetic relatedness like ‘race’. We should allow the genome to teach us the extent of our evolutionary history without abbreviating it with preconceived notions of population boundaries and social identities. We must recognize that social identities are formed in various ways—ancestry, ethnic and tribal background, geopolitical boundaries, language, and other social and behavioral activities. Identities change over time and from one context to another. Their use as markers of ‘relatedness’ in genetic research without appreciation for how they were formed is likely to produce misleading information concerning the distribution of genetic variation.

We all have a common birthplace somewhere in Africa and this common origin is the reason why we share most of our genetic information. Our common history also explains why contemporary African populations have more genetic variation than younger human populations that migrated out of Africa 100,000 years ago to populate other parts of the world, carrying with them a subset of the existing genetic information.

Given this shared history, why do we interpret human genetic variation data as though our differences rise to the level of subspecies? Two facts are relevant: (i) as a result of different evolutionary forces, including natural selection, there are geographical patterns of genetic variations that correspond, for the most part, to continental origin; and (ii) observed patterns of geographical differences in genetic information do not correspond to our notion of social identities, including ‘race’ and ‘ethnicity’. In this regard, no matter what categorical framework is applied, we cannot consistently use genetics to define racial groups without classifying some human populations as exceptions. Our evolutionary history is a continuous process of combining the new with the old, and the end result is a mosaic that is modified with each birth and death. This is why the process of using genetics to define ‘race’ is like slicing soup: “You can cut wherever you want, but the soup stays mixed”.

How can we grasp the population structure of our species? I believe this requires universal awareness that genomic information cannot be used either to confirm or to refine old social, political and economic classifications such as ‘race’. In particular, we should understand the following points: (i) individuals in genetics studies may have membership in more than one biogeographical clusters; (ii) the borders of these clusters are not distinct; and (iii) population clusters are influenced by sampling strategies. For example, the inference drawn from a study with one or two African populations will probably be very different from that drawn from a study with 100 African populations sampled from north, east, west, central and south Africa. As Steve Olson observed, “Not only do all people have the same set of genes, but all groups of people also share the major variants of those genes. Geneticists have never found a genetic marker that is of one type in all the members of one large group and of a different type in all the members of another large group”50. Furthermore, because most alleles are widespread, genetic differences among human populations are the result of gradations in allele frequencies rather than distinctive diagnostic genotypes…

Read the entire perspective here.

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Changing the paradigm from ‘race’ to human genome variation

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2012-03-24 02:33Z by Steven

Changing the paradigm from ‘race’ to human genome variation

Nature Genetics
Volume 36, Number 11s (2004)
pages S5-S7
DOI: 10.1038/ng1454

Charmaine D. M. Royal, Associate Research Professor
Institute for Genome Sciences & Policy; Department of African and African American Studies
Duke University

Georgia M. Dunston, Founding Director, National Human Genome Center
Howard University

Knowledge from the Human Genome Project and research on human genome variation increasingly challenges the applicability of the term ‘race’ to human population groups, raising questions about the validity of inferences made about ‘race’ in the biomedical and scientific literature. Despite the acknowledged contradictions in contemporary science, population-based genetic variation is continually used to explain differences in health between ‘racial’ and ‘ethnic’ groups. In this commentary we posit that resolution of apparent paradoxes in relating biology to ‘race’ and genetics requires thinking ‘outside of the box’.

Introduction to the state of the science

Knowledge gained from the Human Genome Project and research on human genome variation is forcing a paradigm shift in thinking about the construct of ‘race’, much like the process described by Thomas Kuhn in his renowned book, The Structure of Scientific Revolutions. Kuhn describes the paradigm shift in science as occurring when anomalous, scientific results cannot be explained by inadequate methods. With an accumulation of such anomalies, scientists must begin to consider that the paradigm or model of reality under which the hypotheses are tested has shifted and is no longer valid. Today, scientists are faced with this situation in genomics, where existing biological models or paradigms of ‘racial’ and ‘ethnic’ categorizations cannot accommodate the uniqueness of the individual and universality of humankind that is evident in new knowledge emerging from human genome sequence variation research and molecular anthropological research. The paradigms of human identity based on ‘races’ as biological constructs are being questioned in light of the preponderance of data on human genome sequence variation and reflect the need for a new explanatory framework and vision of humankind with different fundamental assumptions about biological groups that can accommodate new knowledge from a new generation of research.

Discourse on the validity of ‘racial’ categorization in humans is certainly not new and will perhaps continue for generations to come, taking on various forms as new scientific and nonscientific knowledge emerges. Shifts have occurred over time from a purely anthropological or biological debate to conversations about numerous psychosocial, societal, ethical and legal ramifications indicative of the undeniable applicability of the topic of ‘race’ to virtually every aspect of human existence.

This commentary describes the intellectual climate under which new information from human genome research is introduced into twenty-first-century biomedical science and society, new information that forces a more integrative construct of human biology and disease. The discordance between ‘race’ and human genome variation sets the stage for an analysis of the state of the science on human genome variation and ‘race’ and the relationship between genome variation and population differences in health and disease. The paper also provides a brief background for, and overview of, this Supplement to Nature Genetics

…As previously indicated, much of the current literature on genetics and health disparities emphasizes the potential dangers of connecting genetics with disparities, and relatively little research has been directed towards the potential of genomics to further understand health disparities in ways that can accomplish the US public health objectives of Healthy People 2010: a long and healthy life for all and the elimination of health disparities. Conditions are prime for the application of knowledge gained from research on the structure of DNA sequence variation in African and African Diaspora populations to probe the influence of gene-environment interactions in race- and ethnicity-based health disparities. With plans underway for the Translational Genomics Research in the African Diaspora initiative, the NHGC is positioned to lead the US and the global community with a large-scale, interdisciplinary project for human genome research in the African Diaspora. Translational Genomics Research in the African Diaspora will be a population-based resource for translational genomics in clinical research, which capitalizes on the evolutionary and migration history of Africans and the African Diaspora, and a resource for dissecting the contributions of gene-environment interactions (environment broadly defined to include psychosocial, cultural and other subjective factors) to disease susceptibility and response to medicines…

Read the entire commentary here.

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Grassroots Marketing in a Global Era: More Lessons from BiDil

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, United States on 2012-03-24 02:07Z by Steven

Grassroots Marketing in a Global Era: More Lessons from BiDil

The Journal of Law, Medicine & Ethics
Volume 39, Issue 1, Spring 2011
pages 79–90
DOI: 10.1111/j.1748-720X.2011.00552.x

Britt M. Rusert, External Humanities Fellow
Center for the Humanities
Temple University

Charmaine D. M. Royal, Associate Research Professor
Institute for Genome Sciences & Policy; Department of African and African American Studies
Duke University

BiDil, a heart failure drug for African Americans, emerged five years ago as the first FDA approved drug targeted at a specific racial group. While critical scholarship and the popular media have meticulously detailed the history of BiDil from its inauspicious beginnings as a generic combination drug for the general population to its dramatic resuscitation as a racial medicine, the enthusiastic support shown by some African American interest groups has been too little understood, as has their argument that BiDil was an important response to race-based health disparities. In this essay, we show how the drugmaker, NitroMed, used the support it had solicited from black advocacy groups and community members to market BiDil as a unique “grassroots” pharmaceutical to the African American community. We go on to situate BiDil, which relied on a domestic, U.S.-centered conception of race, within the context of the global nature of both race and health disparities. Ironically, the grassroots angle of the BiDil case ultimately obscured the global crisis in health disparities. Furthermore, we argue that the grassroots model initiated by NitroMed should be taken note of, as it marks a potential avenue for the marketing of other drugs in the future.

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Is Race-Based Medicine Good for Us?: African American Approaches to Race, Biomedicine, and Equality

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, United States on 2012-03-24 01:39Z by Steven

Is Race-Based Medicine Good for Us?: African American Approaches to Race, Biomedicine, and Equality

The Journal of Law, Medicine & Ethics
Volume 36, Issue 3, September 2008
pages 537–545
DOI: 10.1111/j.1748-720X.2008.302.x

Dorothy Roberts, George A. Weiss University Professor of Law and Sociology; Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights
University of Pennsylvania

This article presents a preliminary framework for exploring the intersection of science and racial politics in the public debate about race-based pharmaceuticals, especially among African Americans. It examines the influence of three political approaches to race consciousness on evaluations of racial medicine and offers an alternative critique.

Read or purchase the article here.

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