SOCIAL INCLUSIVITY VS ANALYTICAL ACUITY?
A QUALITATIVE STUDY OF UK RESEARCHERS REGARDING THE INCLUSION OF MINORITY ETHNIC GROUPS IN BIOBANKS
ANDREW SMART
Bath Spa University
RICHARD TUTTON
Lancaster University
RICHARD ASHCROFT
Queen Mary, University of London
PAUL MARTIN, ANDREW BALMER, RICHARD ELLIOT
University of Nottingham
GEORGE T.H. ELLISON
St George’s, University of London
B ‘INCLUSION AND DIFFERENCE’ IN THE USA AND UK
The sociologist Steve Epstein has recently described how the
‘inclusion and difference paradigm’ weaves together ‘two ostensibly
different areas of scientific and government concern—the status of
socially subordinated groups, and the meaning of biological difference’
(2004b: 8). Epstein (2007) documents how campaigners acting on
behalf of ‘groups’ such as women and ethnic minorities (as well as
children and the elderly) have lobbied for changes to the conduct and
governance of biomedical research in the US. Advocates from these
diverse constituencies coalesced around the claim that ‘the white
male’ had become the normative ‘standard’ for biomedical research
participants. They argued that the consequent exclusion of other
‘populations’ was predicated on the potentially false assumption that
the results of studies undertaken on white men could be extrapolated
to all human beings. They claimed that women, children, the elderly
and individuals from different ethnic groups could differ both socially
and biologically in ways that mattered for medical research and
treatment.
Amidst debates about the veracity and legitimacy of these claims,
new governance regimes were implemented in the US in an attempt
to ensure that the practices and outputs of publicly-funded science
are equal and fair (Epstein, 2007). Thus, s 492B of the Public Health
Service Act (added in 1993) mandates that ‘members of minority
groups’ should be ‘included as subjects’ in clinical research, and
that trials should be designed and carried out to explore if ‘minority
groups’ are affected ‘differently than other subjects in the trial’.
Epstein argues that a consequence of these developments has been
what he calls a ‘categorical alignment’: ‘the categories of identity
politics, the biological categories of biomedical research, and the
social classifications of state bureaucrats [have become] one and the
same system of categorization’ (Epstein 2007: 91). For example, the
Office of Management and Budget’s (OMB) classification of ‘race’
and ethnicity ‘provided the basis for the coding scheme used by
the National Institutes of Health in determining compliance’ with
the legislation regarding the inclusion of ‘minority groups’ in NIHfunded
research (Epstein, 2004a: 196). Thus, although the OMB has
explicitly acknowledged that the categories used by this classification
are ‘social-political constructs’ (Office of Management and Budget,
1997), they have nonetheless become integral to biomedical science
(Friedman et al., 2000; Stevens, 2003). Indeed, there is concern that
genetic and biomedical research which uses ‘racial’ and/or ethnic
group categories could revive the discredited yet resilient idea that
such groups have innate, essential and immutable characteristics. This
includes not only research using traditional ‘racial’ group categories,
but also research using ethnic group categories which are sometimes
classified using ‘racial’ criteria (such as skin colour), ‘racial’ categories
(such as continental groupings) or ‘racial’ labels (such as ‘Caucasian’).
The fear is that such research could thereby reinvigorate ‘racial
science’ (the study of biological differences between social groups
as if these are innate and genetic in origin) and ‘scientific racism’
(the use of ‘racial science’ to explain and justify inequalities among
social groups) (Brawley, 1995 cited in Epstein, 2004a; Juengst, 1998;
Ellison and Jones, 2002; Duster, 2005; Kahn, 2006; Epstein, 2007).
Within the UK, some of the discourses associated with the US
‘inclusion and difference paradigm’ have recently become apparent.
Currently, there is no UK equivalent to s 492B of the Public Health
Service Act. However, under s 71 of the RRA (as amended in 2000),
relevant public authorities (and private sector bodies performing
functions on behalf of public authorities) have a general statutory
duty to promote ‘race equality’. To facilitate implementation of this
requirement, the UK Commission for Racial Equality (CRE, now
part of the UK Equality and Human Rights Commission) established
a Code of Practice (CRE, 2002). Mirroring the RRA, this includes:
(1) a general duty requiring public bodies to eliminate unlawful
discrimination on the grounds of ‘racial’ or ethnic or national origin,
promote equality of opportunity, and engender good relations between
people of different ‘racial’ groups; and (2) a specific duty (applied to
some public bodies) to publish a ‘race equality scheme’ that identifies
the arrangements made for meeting the general duty and the methods
involved therein.
In terms of the governance and conduct of biomedical research,
a number of key institutional actors now operate under the auspices
of the RRA. Appendix 1 of the Code of Practice lists most of the
UK’s Research Councils as non-departmental public bodies (NDPBs).
NDPBs are bound by the general duty (to eliminate unlawful
‘racial’ discrimination), but not by the specific duty (to produce a
‘race equality scheme’). Despite this, several of the UK Research
Councils listed in Appendix 1 have produced ‘race equality’ schemes,
including those most closely associated with biomedical research (the
Medical Research Council, the Biotechnology and Biological Sciences
Research Council, and the Economic and Social Research Council).
While privately funded biomedical research charities are not bound
by the Code, at least some—including, for example, the Wellcome
Trust—adhere to similar internal codes regarding ‘race equality’.
Elsewhere, the National Health Service (NHS) and certain
NHS organisations (NHS Hospital Trusts, Primary Care Trusts and
Strategic Health Authorities (SHA)) are bound by both of the general
and the specific duties. All NHS organisations have implemented
measures to identify concerns about ‘race equality’, and these are
monitored through reporting mechanisms such as Annual Delivery
Targets (Department of Health, 2006). The collection of data on the
ethnicity of NHS patients has been mandatory within UK hospitals
since 1995 (Gill and Johnson, 1995; Aspinall, 1995). Such data
are routinely analysed to identify variation in the uptake of health
services, ostensibly to assess any differences that might reflect
unlawful discrimination.
Despite these recent legal changes, information on the inclusion
of participants from minority ethnic groups in UK-based biomedical
research can be hard to find, as many investigators do not provide
data on the ethnic background of study subjects when reporting their
research findings (Ellison and Rosato, 2002; Hussain-Gambles, 2003;
Heiat, Gross and Krumholz, 2002). However, several recent studies
have uncovered evidence that minority ethnic groups have been
underrepresented (Heiat, Gross and Krumholz, 2002; Mason, et al.
2003; Ranganathan and Bhopal, 2006; Bartlett, et al., 2005 cited in
Mehta, 2006). Although the reasons for this are still being explored
(e.g., Jolly, 2005), Mehta (2006: 668) has argued that:
Widening minority ethnic group access to, and representation across,
UK biomedical and clinical research will… depend on a number of
interdependent factors and processes. At the least it will require the
development and delivery of a clear policy framework and its guidance,
coupled with increased or better targeted resources. More accessible
culturally and linguistically competent recruitment programmes are
also needed. Establishing greater clarity about equality and diversity
issues will be key to these developments. Among the most pressing
issues is a need to: consistently and usefully define the UK’s different
populations and subpopulations; identify the contexts in which ethnoor
population-specific data [are] actually important; and ascertain the
relative sample sizes necessary to draw meaningful conclusions.
Traces of the ‘inclusion and difference paradigm’ can be clearly
discerned in Mehta’s ‘equality and diversity issues’, which similarly
span the domains of biomedical science policy and practice.
These interconnected concerns about definition, relevance and
veracity have been reflected in debates surrounding the flagship British
biobanking project, UK Biobank. While Ranganathan and Bhopal
(2006) underline the importance of UK Biobank recruiting volunteers
from diverse ethnic backgrounds, Mehta and Saggar (2005: 207)
warn that the project ‘may have limited value for minority [ethnic]
groups’. Mehta and Saggar (2005) echo the recommendations of
population geneticists Tate and Goldstein, who suggested that UK
Biobank should intentionally over-sample participants from minority
ethnic groups ‘to allow identification of gene-environment interactions
specific to the minority groups’ (2004: S42). UK Biobank thus faced
a difficult political and scientific choice. Its options included: oversampling
from all minority ethnic groups; collecting equal samples
of two or more ethnic groups; using a strictly ‘representative’ sample
of participants from all ethnic groups in numbers proportionate to
their numbers in the wider UK population; or excluding participants
from all but one ethnic group. Eventually, UK Biobank decided to
generate modestly boosted samples from a small number of selected
minority ethnic groups as well as a larger core sample from the UK’s
‘majority’ ethnic population (Tutton, 2008). This compromise not only
excluded some minority ethnic groups, but the samples it included
from selected minority ethnic populations were still numerically
smaller than that from the ‘majority’ ethnic population.
The remainder of this paper will show that such debates about
the inclusion of minority ethnic groups in UK biobanks reflect a
disjuncture in the ‘inclusion and difference paradigm’ which has
important ethico-legal implications. Drawing on data collected
in a wider project exploring the use of ‘race’ and/or ethnicity in
contemporary UK-based genetics and biomedical research (Martin
et al., 2007), the analysis presented here explores the views and
experiences of researchers working at UK Biobanks that have been
designed to explore the aetiology of common complex diseases. In
particular, it focuses on evidence of the discordance between the twin
imperatives of social inclusivity and analytical acuity that influence
the perceived relevance of ethnicity as a sampling, descriptive and/or
analytical variable.
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