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
ABSTRACT
This paper examines how the drive to include minority ethnic groups in biomedical
research raises challenging questions for the governance of some biobanks. Using
findings from a qualitative study with researchers working at 10 UK biobanks that
have been designed to explore common complex diseases, our study highlights
the potential discordance between the twin imperatives of ‘social inclusivity’ and
‘analytical acuity’. While the researchers interviewed were keen to include minority
ethnic groups in their research, they were also concerned that this could have
deleterious effects on the precision of their analyses. In our discussion of these
findings we show that there remains considerable debate as to the impact of including
participants from minority ethnic groups on analytical acuity. Nevertheless, a principle
of justice requires that potential participants from all ethnic groups should be given
the opportunity to participate in and benefit from biomedical research, and UK law
requires public bodies (including research councils) to demonstrate that there is no
unintentional or unjustifiable ‘racial’ discrimination in their activities. Researchers’
concerns about analytical acuity could result in calls for study designs that examine
every ‘different’ ethnic group, which would have consequences for the governance
of some biobank studies and for efforts to challenge the discredited yet resilient idea
that differences between ethnic groups are innate, essential and immutable.
A. INTRODUCTION
The importance of including minority ethnic groups in biomedical
research on ethico-legal grounds is well recognised. As a principle
of justice, participants from minority ethnic groups should not be
denied the opportunity to participate in, and benefit from, biomedical
research. Indeed, this principle is enshrined in the Race Relations Act
1976 (as amended by the Race Relations (Amendment) Act 2000)
(RRA), which prohibits discrimination by public bodies or public
servants providing healthcare, education or other social services on
the grounds of ‘racial’ or ethnic or national origin. Moreover, there
are potential health benefits in exploring differences between ethnic
groups, not least in respect to differences in disease prevalence and
therapeutic outcomes. However, the inclusion of minority ethnic
groups in biomedical research raises challenging questions for the
governance of biobanks. These include how to: avoid discrimination;
promote inclusivity; provide ‘best value’ for the populations they are
designed to represent; and maximise public value by allowing the
extraction of useful information for healthcare and further research.
Furthermore, important concerns have been raised about the potential
for contemporary genetic and biomedical research that explores
differences between putative ‘racial’ or ethnic groups to reinvigorate
discredited ideas about ‘racial science’.
In this paper, we explore these issues using data from a qualitative
study of researchers from a range of UK biobanks studying the
aetiology of common complex diseases. To set the context, we chart
the development of an ‘inclusion and difference paradigm’ in the US
(following Epstein 2004a, 2007), and explore the extent to which
this paradigm is evident within the UK. We then present selected
data from research which explored how geneticists and biomedical
scientists working in these contexts use classifications of ‘race’ and/
or ethnicity, and the implications for scientific and healthcare practice
(Martin, et al. 2007). We use these data to identify a perception
among our interviewees that there are two potentially conflicting
imperatives facing the inclusion of participants from minority ethnic
groups in UK biobanks—a drive for ‘social inclusivity’ and a desire
for ‘analytical acuity’. After critically evaluating the viewpoints of
the researchers we interviewed, we discuss the significance of their
perspective for the governance of biobanks, and societal perceptions
of ethnic groups.
However, before proceeding, we feel it is important to offer
a word of caution about some of the terms used in this paper.
‘Minority ethnic group’ is commonplace ‘short-hand’ for a complex
set of social relationships, and the processes that create, sustain and
modify these. We share the current and widely-held sociological
position that ethnicity is one of a range of concepts used to consider
social identities that are related, in one way or another, with notions
of ‘decent’ or ‘ancestry’ (e.g. Cornell and Hartmann, 1998; Fenton,
1999, 2003). As such, ‘ethnic groups’ are fluid cultural or political
groupings of people who classify themselves (or are classified by
others) into socially constructed groups (Jenkins, 1997). These
groupings can be labelled in a variety of different ways, although it is
recognised that some of the characteristics used to classify ethnicity
and label ethnic groups (such as geographical origins) are common to
the related social constructs of ‘race’ and ‘nationality’ (Jenkins, 1997;
Cornell and Hartmann, 1998: Fenton, 1997, 2003). We therefore use
the term ‘minority ethnic groups’ and the phrase ‘participants from
minority ethnic groups’ without implying that the notion of ethnicity,
or the way in which ‘minority’ and ‘majority’ groups are produced
and recognised, is necessarily straightforward. Instead, we take the
notion of an ethnic group, and which groups constitute a ‘minority’ or
‘majority’, as fluid, context-specific and dependent on how ethnicity
is conceptualised and produced. We would thus encourage readers to
avoid seeing our use of these terms as meaning that ethnic groups
are ‘natural’ or immutable entities, or assuming that ‘majority’ and
‘minority’ status necessarily corresponds to specific ethnic groups
rather than others.
B. 'Inclusion and Difference' in the USA and UK >>
©2007 A B Academic Publishers