Medical Law International - Social Inclusivity Vs Analytical Acuity? A Qualitative Study Of UK Researchers Regarding The Inclusion Of Minority Ethnic Groups In Biobanks

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

C METHODS

   While there are many different types of biobank (Gibbons et al., 2007), we chose to focus on those which aim to study common complex diseases such as diabetes and hypertension, for three specific reasons. First, these studies often analyse differences within populations by classifying research participants into sociodemographic subgroups. Second, all such biobanks collect data for analysing genegene and gene-environment interactions in which ethnicity might be perceived to act as a potential confounding variable (either as a marker of ‘collective genetic affinity’ or of ‘collective environmental exposure’; Ellison and Jones, 2002). Thirdly, it has been suggested that such studies will be important for future healthcare policy and practice (Bell, 1998; Khoury, Burke and Thomson, 2000), so that any findings linking ethnicity, genetics and health could have a significant impact within the public arena.
   The biobanks considered for inclusion in our study were identified from a range of sources, including the Medical Research Council, the House of Lords Science and Technology Committee, the National Research Register, and the campaign group GeneWatch. Our sample was purposively selected to ensure heterogeneity (Ritchie, Lewis and Elam, 2003) using criteria relating to cohort size, study design, research focus and geographical location. Our final sample comprised 10 biobanks, from which we interviewed 17 researchers including epidemiologists, clinicians, geneticists and other research staff. The interviews were conducted in accordance with the British Sociological Association’s ethical guidelines (BSA, 2002). As the scope of confidentiality in our study was potentially limited by the possibility of identifying a biobank from our description of its research focus, we agreed with our respondents that quotes from individual researchers would be labelled anonymously (PGD 01-PGD 17) as a precautionary measure.
   In the interviews, we asked respondents whether ‘race’ and/ or ethnicity were felt to be relevant to their research and, if so, how these were conceptualised, operationalised and measured, and whether there were any associated practical, scientific or socio-ethical concerns. The research team (AS, PM, RT, RA and GTHE) read anonymised interview transcripts and devised, discussed and agreed upon a list of key themes emerging from the data. A coding frame based on these themes was then applied to all the transcripts using Atlas-ti (a qualitative data analysis software package), to identify commonalities and differences within and between the different interview transcripts (Mason, 1996; Spencer, Ritchie and O’Connor, 2003). The focus of this paper emerged through discussion within the team about the relationship between two issues raised by some of the interviewees in their responses to our questioning: (1) the inclusion of participants from minority ethnic groups in research samples; and (2) the impact that variations in ethnicity may have on the precision of their analyses. To explore this relationship further, we extracted and analysed a number of descriptive codes that had been applied to the data, including ‘representativeness’, ‘inclusion’ and ‘statistical power’. We selected the extracts used in the analyses that follow to represent the range of views expressed by the 12 respondents in our sample of 17 interviewees who had discussed these issues.

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