Standardization of Race and Ethnicity

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    RESEARCH NOTE

    ABSTRACT As the search for human genetic variation has become a priority for

    biomedical science, debates have resurfaced about the use of race and ethnicity as

    scientific classifications. In this paper we consider the relationship between race,

    ethnicity and genetics, using insights from science and technology studies (STS) about

    processes of classification and standardization. We examine how leading biomedical

    science journals attempted to standardize the classifications of race and ethnicity, and

    analyse how a sample of UK genetic scientists used the concepts in their research. Our

    content analysis of 11 editorials and related guidelines reveals variations in theguidance on offer, and it appears that there has been a shift from defining the

    concepts to prescribing methodological processes for classification. In qualitative

    interviews with 17 scientists, the majority reported that they had adopted socio-political classification schemes from state bureaucracy (for example, the UK Census)

    for practical reasons, although some scientists used alternative classifications that they

    justified on apparently methodological grounds. The different responses evident in

    the editorials and interviews can be understood as reflecting the balance of flexibility

    and stability that motivate standardization processes. We argue that, although a

    genetic concept of race and ethnicity is unlikely to wholly supplant a socio-political

    one, the adoption of census classifications into biomedical research is an alignment of

    state bureaucracy and science that could have significant consequences.

    Keywords classification, ethnicity, genetics, population, race, standardization

    The Standardization of Race and Ethnicity in

    Biomedical Science Editorials and UK

    Biobanks

    Andrew Smart, Richard Tutton, Paul Martin, George T.H.

    Ellison & Richard Ashcroft

    The received notion that race and ethnicity are socio-political constructs

    with limited biological validity is under challenge. Markers of genetic

    ancestry have been correlated with groups classified by race and ethnicity

    (Risch et al., 2002). Scientists exploring disease aetiology and drug response

    have identified genetic differences between populations, some of which cor-

    relate and overlap with population groupings defined using racial and eth-

    nic classifications (Burchard et al., 2003). Moreover, the US Food andDrug Administration (FDA) has approved its first ethnic drug (Taylor

    Social Studies of Science 38/3 (June 2008) 407423

    SSS and SAGE Publications (Los Angeles, London, New Delhi and Singapore)

    ISSN 0306-3127 DOI: 10.1177/0306312707083759

    www.sagepublications.com

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    et al., 2004). These developments have re-ignited debates within the bio-

    medical science community about the conceptualization, measurement

    and use of race and ethnicity (for example, Kaplan & Bennett, 2003;

    Rathore & Krumholz, 2003; Bhopal, 2004), particularly in relation to

    genetics (for example, Braun, 2002; Foster & Sharp, 2002; Sankar & Cho,2002; Root, 2003; Sankar, 2003; Cooper et al., 2004).

    Social scientists, meanwhile, have suggested that population differ-

    ences are increasingly explained in molecular rather than socio-political

    terms (Kahn, 2006; Skinner, 2006). Troy Duster (2005) is concerned that

    we are witnessing a biological reinscription of race, while Nikolas Rose

    (2007) has instead argued that race occupies an unstable space between

    identity politics and a molecular vision of the genome. In this paper, we

    consider the questions arising from the renewed prominence of race and

    ethnicity in biomedical science by examining empirical evidence of how theconcepts are being classified and standardized. Our data are drawn from

    the editorial guidance in biomedical science journals and interviews with

    scientists working at biobanks in the UK. We show how the editorials and

    scientists have standardized the concepts in different ways and then reflect

    on: (1) the imperatives behind these differences; and (2) the implications

    for understanding the intersection between race, ethnicity and genetics.

    Classification and Standardization

    Classification is a pervasive, mundane and transparent activity (Roth,

    2005: 582): a basic social and scientific practice for making sense of and

    ordering the world (Durkheim & Mauss, 1963; Foucault, 1992; Bauman,

    1993; Bowker & Star, 1999; Waterton, 2002; Lie, 2004; Roth, 2005). In an

    idealistic sense, the classifications that scientists construct are unlike many

    of those used in everyday life, as they are designed to be usable by others

    in the scientific community (Bowker & Star, 1999). In practice, however,

    scientific classifications are historically and socially contextualized. The

    processes of creating and using classifications involve socially negotiated,

    contingent and localized ways of coping with ambiguity (Roth, 2005).

    Thus, Bowker and Star (1999) claim that classifications can be boundary-

    objects: concepts that are capable of spanning different contexts while

    potentially being operationalized differently in each setting.

    In this paper, we treat classifications of race and ethnicity as boundary

    objects that are used across a range of social settings, including the social and

    natural sciences, public institutions and popular culture. The ambiguity of race

    and ethnicity is reflected in the considerable literature devoted to operational-

    ization and measurement (see Bulmer, 1986), the epistemic issues of race as a

    classification of the human species (Montague, 1972; Marks, 1998; Goodman,2000) and the scientific, social and historical dynamics of racial science

    (Stepan, 1982; Harris & Waltraud, 1999; Dubow, 2001; Lie, 2004). The use

    of these concepts is characterized by uncertainty, which at least partially stems

    from the absence of any universally accepted definitions. Shim (2005) argues

    that there is, nevertheless, a continuing ritualistic inclusion of classifications

    408 Social Studies of Science 38/3

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    of race and ethnicity in scientific research, which is driven by scientific prac-

    tices that value generalizability, comparability and standardization.

    Bowker and Star (1999) suggest that classifications become standard-

    ized when they are portable across different social settings. Standardization,

    like classification, is a socially negotiated and historically situated process(Fujimura, 1996). It is concomitant to processes of translation, as standards

    can enable heterogeneous systems of people and things to interact and com-

    bine across time and space. Agreed standards can reduce uncertainty, com-

    petition and conflict in a socio-technical network, but they also need to be

    flexible and adaptable to local situations (Watson-Verran & Turnbull, 1995).

    The achievement of standardization has been linked to the success of scien-

    tific fields in producing and testing theories, and generating investment

    (Fuchs, 1992). Joan Fujimuras (1996) study of cancer research showed how

    science, industry, government and patient groups co-constructed the study ofcancer as a genetic disease. Standardization of the oncogene package

    enabled the research field to become highly productive and cohesive. In our

    study we will consider the extent and nature of the standardization of race

    and ethnicity in editorial guidance and the practice of UK biobanks.

    Investigating the Standardization of Race and Ethnicity

    Our research began with a documentary analysis to identify how editorial

    guidance in biomedical science has addressed the classification of race andethnicity, particularly the issues of conceptualization and use. We reviewed

    editorial guidance as it performs a social role that reflects and serves a par-

    ticular research community (Morris, 1988) and it sets standards for prac-

    tice (Bhopal et al., 2000; cf. Davidoff, 2000). Using PubMed we searched

    for editorials in the fields of human genetics and general medicine (includ-

    ing specialist disciplines such as paediatrics and dermatology) between

    1994 and 2004. We identified 11 papers in nine journals (see Table 1). Six

    of these journals rank in the top ten of their respective fields and so may be

    considered significant and influential publications.1 As we were concerned

    with standardization, we also analysed the International Committee of

    Medical Journal Editors (ICMJEs) guidance on race and ethnicity.2 The

    ICMJEs Uniform Requirements are a set of standards for biomedical science

    publishing, including recommendations on the use of language and speci-

    fications for submission and review. These are followed by more than 500

    journals, including all but two of the publications in our sample.3

    We also interviewed 17 epidemiologists, clinicians, geneticists and other

    research staff at ten UK biobanks (see Table 2). The term biobank

    describes a repository of data (usually health, lifestyle or genealogical data)

    that is linked to stored biological materials (for example, DNA samples)(Tutton & Corrigan, 2004). As there are many different types of biobank

    (Gibbons et al., 2007), we focused largely on those that studied common

    complex diseases. We chose to explore the use of race and ethnicity in this type

    of genetic research for three reasons. First, these studies often analyse popu-

    lation-level difference by classifying research participants into population sub-

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 409

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    410 Social Studies of Science 38/3

    TABLE 1

    Journal editorials

    Journal

    1

    2

    3

    4

    5

    6

    7

    8

    Hospital and

    Community

    Psychiatry

    British

    Medical

    Journal

    Nature

    Genetics

    Canadian

    Medical

    Association

    Journal

    Archives of

    Pediatric and

    Adolescent

    Medicine

    Journal of

    Adolescent

    Health

    Nature

    Genetics

    Archives of

    Dermatology

    Author

    Bell, C.C.

    British

    Medical

    Journal/

    McKenzie,

    K. & N.S.

    Crowcroft

    Nature

    Genetics

    Canadian

    Medical

    Association

    Journal

    Rivara, F &

    L. Finberg

    Litt, I.F.

    Nature

    Genetics

    Williams,

    H.C.

    Date

    1994

    1996

    2000

    2000

    2001

    2001

    2001

    2002

    Comments on

    meanings

    Race has a confusing

    status it can be a

    genetic, social or political

    category

    Race and ethnicity have

    limited biological

    relevance

    Race as environmental

    and social factors (e.g.

    experiences of

    discrimination and diet)

    and not a proxy for

    genetic variation

    Race and ethnicity seen

    to have wide range of

    meanings from being a

    genetic, cultural or

    socio-economic category

    Both race and ethnicity,

    are ambiguous, lacking

    any scientific basis for

    their meaning

    Race seen primarily in

    social terms as relating to

    different social groups

    and patterns of

    behaviour

    Race is a social concept

    but one that is imprecise

    in its definition

    Race is a flawed social

    construct

    Comments on use

    and utility

    Race has value for

    research if confused use

    could be rectified

    Race should not be used

    to examine cultural

    differences, but can be

    used if it is proved to

    have a biological

    correlate relevant to thedisease. Ethnicity can be

    used to examine

    disparities in access to

    heath services

    Race and genetic

    difference should not be

    confused. Genetic

    variation can be

    measured directly

    Race and ethnicity

    should be clearly defined

    and justified on basis of

    good science to avoid

    confusion and potentially

    misleading results

    Using ethnicity in

    preference to race is

    misleading as ethnicity is

    often a synonym for race

    Avoid routinized use of

    race; so careful

    consideration should be

    given to when race is

    relevant to research

    findings

    Preference for use of

    genetic evidence rather

    than race for examining

    differences in drug

    response among

    populations

    Develop a methodology

    for using ethnicity to

    explore the role of genes

    and environment in

    human disease

    (continued)

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    groups. Second, some studies focus on geneenvironment interactions, which

    is arguably a location at which race and ethnicity have the potential to be

    confounding variables. Third, it has been suggested that such studies will beimportant for future healthcare policy and practice (Bell, 1998; Khoury et al.,

    2000), meaning that findings that link race, ethnicity and genetics could have

    a significant public impact. We identified potential research sites from the UK

    Medical Research Council, the UK House of Lords Science and Technology

    Committee, the National Research Register and the campaign group GeneWatch.

    Our, sample was purposively selected to ensure heterogeniety (Ritchie et al.,

    2003) using criteria relating to cohort size, study design, geographical location

    and recruitment policies. The research was conducted in accordance with the

    British Sociological Associations ethical guidelines.

    4

    To respect confidentiality,Table 2 includes only information relevant to this paper (on the projects

    research focus and its recruitment policy), and quotations from individuals are

    labelled anonymously (PGD1, PGD2, etc.).

    In the interviews, we asked respondents how race and ethnicity was con-

    ceptualized, operationalized and measured in their studies, and if there were

    any associated practical, scientific and socio-ethical concerns. Anonymized

    interview transcripts were read by the whole research team, and a list of key

    themes was devised, discussed and agreed upon. The coding frame was

    applied to all the transcripts using Atlas-ti (a qualitative data analysis software

    package)5, and a cross-sectional, thematic analysis was conducted to identify

    commonalities and differences (Mason, 1996; Spencer et al., 2003). The

    data reported here are from a numerically small sample of biobanks and prac-

    titioners who worked with them, selected using a non-probability sampling

    method. As such, we make moderatum generalizations that are tied to the

    context of the study (Williams, 2000; Payne & Williams, 2005).

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 411

    TABLE 1 (continued)

    Journal

    9

    10

    11

    Clinical and

    Investigative

    Medicine

    Journal of

    the American

    Medical

    Association

    Nature

    Genetics

    Author

    Bevan, D.

    Winkler,

    M.A.

    Nature

    Genetics

    Date

    2004

    2004

    2004

    Comments on

    meanings

    Race is a historically

    rooted pejorative

    category linked to

    social status

    Individual scientists to

    justify their choice of

    race orethnicity

    Race as the combination

    of ethnicity, ancestry and

    phenotypic features

    Comments on use

    and utility

    Avoid use of race as

    surrogate for directly

    measurable genetic

    information and

    differences

    Research subjects must

    be allowed to designate

    their own racial or ethnic

    categorization

    Use ancestry for

    information about

    descent, ethnicity for

    cultural and social

    factors, and race only

    as legacy of

    discrimination

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    Standardizing Race and Ethnicity in Editorial Guidance

    Attempts by individual editors to standardize race and ethnicity have

    meant that different and potentially incommensurate classifications have

    been promoted by journals in different disciplinary (and national) contexts

    (Table 1). There are various opinions about the basis of race (as biological,

    genetic, ancestral, phenotypical, social, socio-economic, cultural, politicaland environmental), and the relationship between race and ethnicity (see

    Table 1, numbers 2, 8 and 11). Indeed, some editorials express dissatis-

    faction about the validity of the concepts: race is described as confusing,

    imprecise and flawed (1, 7 and 8), while ethnicity is also viewed as ambigu-

    ous and sometimes just a synonym for race (5). Indeed, the routine use of

    412 Social Studies of Science 38/3

    TABLE 2

    Characteristics of biobanks included in the study

    Interviewee

    Code

    Research Focus Classification Recruitment (where quoted)

    Various epidemiological

    studies

    Health and

    development of

    children

    Health and

    development

    Various common

    diseases

    Hypertension

    Cardiovascular disease;

    stress in the

    workplace

    Various common

    diseases

    Coronary heart disease

    Renal failure/disease

    Population history:

    genetic controls for

    other studies

    UK Census

    UK Census

    NHS national

    standard

    UK Census

    White European or

    not

    UK Census

    UK Census

    Caucasian

    European, South

    Asian, African or

    Afro- Caribbean,

    Chinese or Other

    UK Census

    Geographical

    ancestry

    Open policy not directed at

    representative national

    sample

    Open policy not directed at

    representative national

    sample

    Policy directed at

    representative local

    sample

    Policy directed at

    representative national

    sample

    Exclusion of non White

    European populations

    Open policy not directed at

    representative national

    sample

    Open policy not directed at

    representative national

    sample

    Open policy not directed at

    representative national

    sample

    Policy directed at

    representative local

    sample

    Exclusion of non White

    British populations

    PGD1

    PGD3

    PGD4

    PGD9

    PGD14

    PGD5

    PGD6

    PGD7

    PGD8

    PGD16

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    race is questioned (6), or even proscribed in certain instances (it should not

    be used to explore directly measurable genetic difference [3 and 9] or cul-

    tural differences [2]). Nevertheless, race and ethnicity were perceived by

    some to have continuing utility. It was argued that race can be used in bio-

    medical science when it has a biological correlate relevant to the disease(2), and that ethnicity can be useful for exploring the role of genes and the

    environment in disease (8). Alternatively, ethnicity was treated as a poten-

    tial indicator of inequality (2) or broader cultural and social variables (11),

    and similarly, race was used as a proxy for social and environmental factors

    (3) or, more narrowly, the legacy of discrimination (11).

    The variability in the editorials was echoed in the ICMJEs recom-

    mendations. Prior to 2001, the Uniform Requirements cautioned that the

    definition and relevance of race and ethnicity are ambiguous. Authors

    should be particularly careful about using these categories (cited in Bhopalet al., 2000: 76). In 2001, the guidelines became more directive and rec-

    ommend that authors use descriptors based on ethnicity over race (as the

    latter lacks precise biological meaning).5 However, this advice was sub-

    stantially revised in 2004:

    When authors use variables such as race or ethnicity, they should definehow they measured the variables and justify their relevance. Authorsshould specify carefully what the descriptors mean, and tell exactly howthe data were collected (for example, what terms were used in surveyforms, whether the data were self-reported or assigned by others, etc.).6

    The focus of attempts at standardization has thus shifted from a prescrip-

    tion about the classifications themselves to the processes of classification,

    whether using race or ethnicity. Some of the editorials we reviewed were

    similarly concerned with the ways in which research was conducted and the

    performance of classification (4, 10). Using these editorials and the 2004

    ICMJE Uniform Requirements, we identified six methodological principles

    and procedures for classification (see Box 1).

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 413

    1. Provide a rationale for characterizing research subjects by race or

    ethnicity that relates to the purpose and aims of the investigation;

    2. Ensure transparent and explicit accounts of how race or ethnicity

    are used to classify research subjects;

    3. Avoid relying on the use of broad categories and potentially ambiguous

    labels (such as white or Asian) when operationalizing race or ethnicity;

    4. Aim to be highly descriptive when using racial or ethnic labels, and

    document the way these concepts are measured;5. Recognize that research subjects are best able to designate their own

    racial or ethnic identities, and that they should be measured accordingly;

    6. Do not use race or ethnicity as proxies for variables that can be

    measured directly.

    Box 1 Methodological principles and procedures for classification

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    Standardizing Race and Ethnicity in UK Biobanks

    Most of our respondents favoured the term ethnicity over the term race,

    reflecting its more frequent usage in the UK. Where interviewees explicitly

    defended the preference, their reasons related to a perceived lack of scien-

    tific credibility of race as a biological concept and what that led to in

    terms of racism (PGD9). Three different (and potentially conflicting) con-

    ceptualizations of ethnicity were expressed (sometimes during the same

    interview). Eight interviewees referred to ethnicity as having largely a

    genetic meaning related to biological ancestry, meaning that it could be

    used as an external marker of genetic difference (PGD8). Ethnicity was

    also conceptualized as differences in lifestyle or socio-cultural practices

    (particularly diet and exercise), meaning it could be used to measure the

    non-genetic factors involved in disease aetiology. The third conceptualiza-

    tion was of a different order. Three interviewees commented that ethnicity

    was a social, political or cultural construct or classification; a product of

    socially negotiated definitions or socialpolitical processes rather than a

    natural categorization of biological ancestry and/or socio-cultural practice.

    Some respondents viewed genotyping as a route for resolving the con-

    ceptual ambiguities of ethnicity. One interviewee thought that genotyping

    could effectively prove or disprove the biological reality of the socio-cultural

    groupings to which people self-ascribe, or into which they are assigned:

    to see whether these categories are really what people think they are, inthat theyre sort of defined and distinguishable from each other in termsof [the] genetic context. (PGD7)

    Alternatively, genotyping was conceived as a more appropriate alterna-

    tive to ethnicity for elucidating the genetic influences in common complex

    diseases:

    If you can actually get the information at the genetic level, which we the-oretically can ultimately, then thats obviously going to be more accurate

    and more useful for what we actually want to do. (PGD14)

    At present, none of the projects were actually using genotyping to check the

    veracity of ethnic categories, or to isolate the genetic components of eth-

    nicity that might be relevant to disease. Nine out of the ten were, never-

    theless, using a measure of race and ethnicity in their study design.

    To categorize population groups, seven of the ten biobanks adopted

    pre-existing systems of self-assigned classification. Of the seven, six used

    the classification produced by the National Office of Statistics for the

    decennial UK National Census7

    (hereafter the Census classification) andone used the UK National Heath Service (NHS) national standard eth-

    nic group classification (Department of Health et al., 2005). The Census

    classification was perceived among our interviewees to be widely used or

    normal. One respondent termed them the standard Census categories

    (PGD1), another commented that theyre the categories that are most

    414 Social Studies of Science 38/3

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    accepted (PGD14), and a third explained how the classification had been

    adopted on a project so as to fit with the UK population reference method

    (PGD6). The scientists we spoke to reported important benefits that arose

    from the Census classifications status as a standardized tool.

    It was considered that the Census classification had been successfullyused in practice and that it was more appropriate and accurate than previ-

    ous systems:

    that tool was used in the 2001 Census with some degree of success, andits felt greater success than all previous Are you black?, Are you Chineseor Oriental? classifications which have been really pretty poor at detect-ing what peoples ethnic origin is. (PGD4)

    This respondent also explained that developing a novel system for classify-

    ing research populations could raise concerns with regard to the choice oflabels used to describe population groups. In contrast, the Census classifi-

    cation was perceived to be acceptable to community groups (likely to be

    a euphemism for minority ethnic groups) as it had been developed with

    community engagement (PGD4).

    Furthermore, using the Census classification had added scientific ben-

    efits that related to its portability. It could allow scientists to make sam-

    pling decisions and assess representativeness, by comparing baseline data

    on the characteristics of the general population with the proportions of cer-

    tain populations in their cohort:

    [It] gives us an idea of whether the kind of numbers that we get are simi-lar to what was found in the Census, so were using the Census figuresto get the proportion in the first place of how many Indians, Pakistanis,Bengalis there are in the UK so it makes sense to use the same categoriesto find out if were getting a representative sample as well. (PGD9)

    Moreover, adopting the Census classification could enable scientists to

    undertake comparative work and engage in dialogue across the research

    community as youre sure that people are using the same categories in dif-ferent studies (PGD14). The researcher who adopted the NHS classifica-

    tion used similar justifications for her selection: it allowed the project team

    to assess the representativeness of their cohort against local health service

    users, compare their findings with their previous studies and match and

    provide information for the NHS (PGD3).

    A minority of projects in our sample (three out of ten) had either adopted

    a broad racial and/or ethnic classification or avoided it altogether. Whatever

    the differences between these alternative methods, the scientists involved all

    justified their decisions on ostensibly methodological grounds. A researcherwho used the broad categories Caucasian European, South Asian, African

    or Afro-Caribbean, Chinese or Other explained that little attention was

    given to classification as the study did not set out to specifically make any

    effort to represent ethnic groups in the UK (PGD8). A scientist whose proj-

    ect had excluded all but white European participants justified this by citing

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 415

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    the purpose of getting as homogeneous a group as possible (PGD5) to elim-

    inate potentially confounding factors that might be introduced by including

    subjects from other ethnic groups. A respondent whose project recruited only

    participants whose families had lived in the same location for three genera-

    tions argued that geographical ancestry was the only objective way to goabout defining what the population of this country is (PGD16).

    Discussion

    The conceptualization of race and ethnicity was ambiguous in our samples

    of both biomedical science editorials and UK biobank studies. The multi-

    ple and conflicting constructions of the meaning, measurement and utility

    of race and ethnicity both reflect and further indicate that the concepts are

    heterogeneous, contingent and locally situated. However, there were dif-ferent responses to this conceptual ambiguity in the editorial guidance

    compared with the practices at UK biobanks.

    Failed attempts to standardize the concepts of race and ethnicity in edito-

    rial guidance have been superseded by an attempt to standardize the method-

    ological processes for their use in scientific practice. The ICMJ and some

    editors have shifted the focus of their guidance toward methodological prin-

    ciples and procedures. This arguably pragmatic shift represents an attempt to

    build a consensus on methodology that might facilitate the continuing use of

    race and ethnicity as legitimate variables. In this instance, a key driver ofstandardization was the need for flexibility in particular settings (Watson-

    Verran & Turnbull, 1995). Ideally, standardized processes for using race and

    ethnicity could be adapted to different contexts, while retaining sufficient

    coherence to allow other scientists to make comparisons and draw their own

    conclusions about validity and reliability. In practice, however, flexibility

    could impede the easy transfer of information between different contexts,

    and it was this portability that was valued so highly by our interviewees.

    The majority of studies in our small, non-random sample had adopted

    socio-political classifications from state bureaucracy. It appears that the

    Census classification in particular was emerging as part of the standardized

    package (Fujimura, 1996) for biobank projects in the UK. To justify their

    decision, interviewees cited the practical benefits: these classifications had

    proven utility (that is, were workable and relatively uncontroversial) and

    were portable (that is, enabled judgements about generalizability and facil-

    itated comparisons). The qualities that made these classifications popular

    were thus their stability, rather than the scientific acuity of the measures.

    In this instance, a key driver of standardization was the desire to facilitate

    interaction and enable the transfer of information (Bowker & Star, 1999).

    The desire for stability can thus be seen to shape the structure, routines andnorms of scientific practice in way that encourages the adoption of socio-

    political classifications of race and ethnicity.

    The value of the Census classification to the scientists in our sample can

    be attributed to the stability it gains from being the official UK State measure.

    We can infer from this that these scientists operated in a socio-technical

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    network that aligned the interests of science and state bureaucracy. In the

    USA, such an alignment has become formalized in regulation (Epstein,

    2004). The 1993 Health Revitalisation Act mandated the National Institutes

    of Health (NIH) to include women and minority groups in its clinical studies.

    In response, the NIH has adopted the Census categories developed by the USOffice of Management and Budget.8 Although these categories were explicitly

    acknowledged as social-political constructs (Office of Management and

    Budget, 1997), they have become integral to biomedical science, for example

    for monitoring the group composition of clinical trials (Friedman et al., 2000;

    Stevens, 2003). Such formalized requirements are a further incentive for sci-

    entists to use state census classifications throughout their work.

    The adoption of a standardized socio-political classification of race and

    ethnicity in biomedical science can be understood as a consequence of both

    the structure and norms of scientific practice and the institutionalized meas-urement of population groups in state bureaucracy. In this sense, the ritu-

    alistic inclusion of race and ethnicity is not encouraged by scientific

    standardization alone (Shim, 2005), but by a socio-technical network in

    which both scientific and bureaucratic requirements for standardization

    have become aligned. Despite this, the use of Census classifications in bio-

    medical science is not entirely stabilized. On the one hand, a small minority

    of projects in our sample used alternative classifications. On the other hand,

    there were differences in the expressions of standardization in editorial guid-

    ance and scientific practice, which were linked to differential demandsfor portability and stability. This latter illustration of the contingency of

    standardization processes (Fujimura, 1996) also signals a potential incom-

    patibility between the emerging methodological ideals and the practices

    reported from our sample of UK biobanks. Indeed, the veracity of the

    Census classification for biomedical science more generally is open to ques-

    tion. The editors of some journals, for example, suggested census categories

    can be useful (for example, the British Medical Journal(1996) and Winkler

    (2004) in theJournal of the American Medical Association), while others were

    more sceptical (for example,Nature Genetics [2000]).

    We noted at the outset that concerns have been expressed about the re-

    emergence of biological and genetic ideas of race and ethnicity (Duster,

    2005; Kahn, 2006; Rose, 2007). In our findings about the practices of clas-

    sification at UK biobanks, both the ostensibly methodological justifications

    for using alternative classification systems and the desire for stable classifi-

    cations have important implications in this regard. Extrapolating from our

    data, we argue that there is a potential for genetic ideas of race and ethnic-

    ity to emerge in three ways.

    (1) The unreflexive or routinized adoption of the Census classificationthreatens to erode the epistemological status of its categories as socio-

    political constructs. As the Census classification emerges as an

    accepted and acceptable part of a biobank study package, scientists

    will be required to give little or no elucidation of the veracity of its

    population categories. Meanwhile, most of our interviewees at least

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    partially conceptualized ethnicity in genetic terms, and some were

    anticipating a future in which genotyping could clarify the conceptual

    ambiguities. There is therefore a potential contradiction in thought

    and practice, which could result in the Censuss socio-political cate-

    gories being naturalized and institutionalized as population groupsthat have an accompanying genetic meaning.

    (2) Geneticization of race and ethnicity could also arise from weak oper-

    ationalization of the concepts. Race or ethnicity can be used effec-

    tively in science (and social science) as proxies for variables such as

    socio-cultural practice, social structural status and (arguably in light

    of recent studies) genetic ancestry. Nonetheless, if a scientist fails to

    clearly state what the proxies are being used to measure, there is a risk

    that social differences could be misinterpreted as genetic differences.

    For example, two studies in our sample used broad racial or ethnicclassifications and used justifications based on concerns with repre-

    sentativeness and other methodological problems. This implied that

    race and ethnicity were relevant to those studies, but it remained

    unclear as to whether the classification was a proxy of socio-cultural,

    social structural or genetic difference.

    (3) There is a risk of geneticization in research that classifies populations

    based on both genotype and race and ethnicity. Some human popula-

    tion geneticists, like one of our interviewees, attempt to replace con-

    cepts of race and ethnicity with genetic ancestry (Bamshad, et al.,2004; Keita et al., 2004; Tishkoff & Kidd, 2004). Superficially, this

    appears to circumvent methodological concerns about the reliability

    and validity of race and ethnicity, as well as socio-political concerns

    about the reification of race as a biologically meaningful category.

    However, the latter problem cannot necessarily be sidestepped so eas-

    ily, at least not in geneenvironment studies. Population-level data on

    racial or ethnic identity can be powerful evidence of environmental

    differences in socio-cultural practice and social structural inequality.

    Datasets that contain both genotypic information and a classification

    of race and ethnicity may allow researchers to explore the intersec-

    tions between them. On the one hand, this might allow race and eth-

    nicity to be used as purely socio-political constructs that interact with

    genotypes. On the other hand, socio-political difference may be sim-

    plistically reduced to genotypic difference.

    Conclusion

    The history of racial science shows the potential for socio-political con-structs of population groupings to be transformed into innate, immutable

    and natural categories, with dire social consequences. Our finding that

    there is a contemporary potential for a geneticization of race and ethnicity

    can therefore be interpreted as continuing the risk of misunderstanding and

    misuse feared by Duster (2005). However, concerns about the molecular

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    rewriting of race could be viewed differently in light of our discussion of the

    differential processes of standardization. From this perspective, a concept of

    race or ethnicity that is linked to, or based on, genotype will necessarily inter-

    act with and influence the existing conceptualizations used in other social set-

    tings. It seems currently unlikely that a genetic concept of race and ethnicitywill ever be portable enough to wholly supplant a socio-political one. This is

    because socio-political constructs (such as the Census classification) have

    interpretive flexibility and mutability, both of which at least have the poten-

    tial to address the ever-shifting popular experiences and understandings of

    race and ethnicity. However, this does not preclude a more nuanced inter-

    section between race, ethnicity and genetics, for example in a social space

    between identity politics and science (Rose, 2007). In our study, like

    Epsteins (2004) in the USA, this intersection was most prominent in the

    alignment of science and state bureaucracy evident in the adoption of theCensus classification by scientists. This is an alignment that could have con-

    sequences for the management and surveillance of population groups by the

    state, as well as the understanding of race and ethnicity across social settings.

    Notes

    This work was supported by the Wellcome Trust Biomedical Ethics Programme, grant

    number: 073524/Z/03/Z/AW/HH. We would like to thank Mike Lynch for his editorial advice

    throughout, and the anonymous reviewers for their comments on earlier drafts of the paper.

    1. ISI Journal Citation Reports for 2004 show that in the category of general and internalmedicine, theJournal of the American Medical Association (JAMA) is ranked 2nd, the

    British Medical Journal(BMJ) 7th and Canadian Medical Association Journal 8th; in

    genetics and heredity,Nature Genetics is 1st; in pediatrics,Archives of Pediatric and

    Adolescent Medicine is 5th, andJournal of Adolescent Health is 19th; in dermatology, the

    Archives of Dermatology is ranked 2nd; in psychiatry, Psychiatric Services is 35th; and in

    clinical and experimental medicine, Clinical and Investigative Medicine is 48th

    ().

    2. The ICMJE originated from an informal grouping of editors (The Vancouver Group)

    and began producing its Uniform Requirements in 1979.

    3. According to the most recent available information (January 1997), the two journals

    whose editorials we discuss in this paper that do not appear to have signed up to theUniform Requirements, are Hospital and Community Psychiatry (Continuing Now retitled

    as Psychiatric Services) andNature Genetics.

    4. The British Sociological Association (2002) Statement of Ethical Practice. Available at

    , accessed 18 September 2007.

    5. Atlas-ti GmbH, Berlin, Germany (www.atlasti.com) (accessed 18 September 2007).

    6. ICMJE (International Committee of Medical Journal Editors) (2001) Uniform

    Requirements for Manuscripts Submitted to Biomedical Journals. Available at

    , accessed 26 January 2005.

    7. ICMJE (International Committee of Medical Journal Editors) (2004) Uniform

    Requirements for Manuscripts Submitted to Biomedical Journals. Available at:

    , accessed 26 January 2005.8. Used for the first time in the 1991 UK Census, the ethnic group classification was

    revised for the 2001 Census after a series of consultations. The population was asked to

    assign themselves to one of the following categories: White White British, White Irish,

    White Other; Mixed White and Black Caribbean, White and Black African, White

    and Asian, Other Mixed; Asian or Asian British India, Pakistani, Bangladeshi, Other

    Asian; Black or Black British Caribbean, African, Other Black; Chinese or other

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 419

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    Ethnic Group Chinese, Other (in Scotland, variations included White Scottish and

    Other White British and Chinese was included in Asian sub-classification) (see Karin

    Bosveld, Helen Connolly and Michael S. Rendall, A Guide to Comparing 1991 and

    2001 Census Ethnic Group Data, available online at ). See Aspinall (2000) for a critical analysis of the 2001 ethnic

    group question; and for a wider discussion about national Censuses and the politics ofracial and ethnic identities, see Kertzer and Arel (2002).

    9. National Institutes of Health (2001) Policy and Guidelines on the Inclusion of Women

    and Minorities as Subjects in Clinical Research Amended, October, 2001 (available

    at ).

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    Andrew Smart is Senior Lecturer in Sociology at Bath Spa University. Hisresearch is focused on the impacts of genetic science and technologies inhealthcare, in particular the challenges faced by practitioners, patients andpolicy-makers. He has published work in journals including Sociology ofHealth and Illness, Bioethics, Critical Public Health, Biosocieties and theInternational Journal for Quality in Health Care.

    Address: Department of Sociology, Bath Spa University, Newton Park

    Campus, Bath BA2 9BN, UK; tel:+

    44 1225 876193; fax:+

    44 1225 875886;email [email protected]

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    Richard Tutton is Senior Lecturer at the Centre for Economic and SocialAspects of Genomics (CESAGen) at Lancaster University. His researchinterests are in the social and ethical issues of banking human tissue forbiomedical research and the implications of developments in science,

    technology and medicine for cultural and social identity. In 2004, he edited(with Oonagh Corrigan) Genetic Databases: Socio-ethical Issues in theCollection and Use of DNA (Routledge).

    Address: CESAGen, Institute for Advanced Studies, Lancaster University,County South, Lancaster LA1 4YD, UK; tel: +44 1524 510838; fax: +44 1524510856; email: [email protected]

    Paul Martin is Reader in Science and Technology Studies and DeputyDirector of the Institute for Science and Society (formerly IGBiS) at theUniversity of Nottingham. His research interests cover innovation in thebiotechnology industry, the social and ethical issues raised by genetics, andthe regulation of new medical technologies. He is Principal Investigator on aWellcome Trust-funded project The Use of Race/Ethnicity in AppliedPopulation Genetics Research.

    Address: Institute for Science and Society, University of Nottingham,University Park, Nottingham NG7 2RD, UK; tel: +44 115 9515419; fax: +44115 8466349; email: [email protected]

    George T.H. Ellison is Professor of Health Sciences at St Georges,University of London and Associate Editor of Critical Public Health. Hisresearch focuses on social inequalities in health, the use of race/ethnicity inbiomedical research, HIV/AIDS and the development of evidence-informedpolicy and practice. This has culminated in the publication of two editedvolumes: Learning from HIV and AIDS(with Cathy Campbell and MelissaParker) published in 2002 by Cambridge University Press; and The Nature ofDifference: Science, Society and Human Biology(with Alan Goodman)published in 2006 by Taylor and Francis.

    Address: St Georges University of London, Cranmer Terrace, LondonSW17 0RE, UK; tel: +44 208 725 5140; fax: +44 208 725 0146; email:[email protected]

    Richard Ashcroft is Professor of Bioethics in the School of Law at Queen Mary,University of London. His research interests include social and ethical issues inpublic health and the evaluation of new medical technologies. He is editor-in-chief of Principles of Health Care Ethics (second edition; Wiley 2007) and co-

    editor of Case Analysis in Clinical Ethics (Cambridge University Press 2005).

    Address: School of Law, Queen Mary University of London, London E14NS, UK; tel: +44 20 7882 3282; fax: +44 20 8981 8733; email:[email protected]

    Smart et al.: Research Note:The Standardization of Race and Ethnicity 423