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

BIBLIOGAPHY

   Aspinall, P. (1995). ‘Department of Health’s requirement for mandatory collection of data on ethnic group of inpatients’. BMJ 311: 1006–1009.
   Aspinall, P. (1997). ‘The conceptual basis of ethnic group terminology and classifications’. Social Science & Medicine 45(5): 689–98.
   Aspinall, P. (2001). ‘Operationalising the collection of ethnicity data in studies of the sociology of health and illness’. Sociology of Health and Illness 23(6): 829–862.
   Bell, J. (1998). ‘The New Genetics in Clinical Practice’. BMJ 316: 618–620.
   Bradby, H (2003). ‘Describing Ethnicity in Health Research’. Ethnicity and Health 8(1): 5–13.
   British Sociological Association (2002). Statement of Ethical Practice. Available at: www.britsoc.co.uk/user_doc/Statement%20of%20Ethical%20Practice.pdf (last accessed 23.02.08).
   Commission for Racial Equality (2002). Code of Practice on the Duty to Promote Race Equality (Statutory). London: CRE. Available at: www.equalityhumanrights.com/Documents/Race/Public%20sector/Race%20equality%20duty/Codes%20of%20practice/Code%20of%20Practice%20on%20the%20Race%20Equality%20Duty.pdf (last accessed 23.02.08).
   Cornell, S., Hartmann, D. (1998). Ethnicity and Race. Making Identities in a Changing World. London: Sage.
   Cruikshank, J.K., Beevers, D.G. (eds) (1989). Ethnic Factors in Health and Disease. Oxford: Butterworth-Heinemann.
   Department of Health (2006). SHAs Review of NHS Race Equality Schemes – DH Analysis of Returns. Available at: www.dh.gov.uk/prod_consum_dh/idcplg?IdcService=GET_FILE&dID=29628&Rendition=Web (last accessed 23.02.08).
   Duster, T. (2005). ‘Race and Reification in Science’. Science 307 (18 February): 1050–1051.
   Ellison, G.T.H. (2006). ‘Human biology and the embodiment of difference’. In Ellison, GTH, Goodman, AH (eds), The Nature of Difference: Science, Society and Human Biology. Boca Raton, FL: Taylor and Francis.
   Ellison, G.T.H., Jones, I.R. (2002). ‘Social Identities and the New Genetics: Scientific and Social Consequences’. Critical Public Health 12: 265–282.
   Ellison, G.T.H., Rosato, M. (2002). ‘The Impact of Editorial Guidelines on the Classification of Race/Ethnicity in the British Medical Journal’. Journal of Epidemiology and Community Health 56: 45A.
   Ellison, G.T.H., Smart, A., Tutton, R., Outram, S.M., Ashcroft, R., Martin, P.A. (2007). ‘Racial Categories in Medicine: A Failure of Evidence-based Practice?’. PLoS Medicine 4(9): 1434–1436.
   Epstein, S. (2004a). ‘Bodily Differences and Collective Identities: The Politics of Gender and Race in Biomedical Research in the United States’. Body and Society 10(2–3): 183–203.
   Epstein, S. (2004b). ‘From Identity Politics to Biopolitical Paradigms: The Making of an Inclusionary Regime in US Biomedical Research’. Paper presented at the 4S/EASST Conference, Paris. Abstract available at: www.csi.ensmp.fr/WebCSI/4S/abstract/abstract_papier.php?numero=319 (last accessed 23.02.08).
   Epstein, S. (2007). Inclusion: The Politics of Difference in Medical Research. Chicago: Chicago UP.
   Fenton, S. (1999). Ethnicity: Racism, Class and Culture. London: Macmillan.
   Fenton, S. (2003). Ethnicity. Cambridge: Polity.
   Friedman, DJ, Cohen, BB, Averbach, AR, Norton, JM (2000). ‘Race/ethnicity and OMB Directive 15: Implications for State Public Health Practice’. Am J Public Health 90: 1714–1719.
   Gibbons, S.M.C., Kaye, J., Smart, A., Heeney, C., Parker, M. (2007). ‘Governing Genetic Databases: Challenges Facing Research Regulation and Practice’. JLS 34(2): 163–189.
   Gill, P., Johnson, M. (1995). ‘Ethnic Monitoring and Equity’. BMJ 310: 890.
   Graves (2006). The Race Myth: More Sincere Fictions in the Age of Genomics. Edinburgh: ESRC Genomics Policy and Research Forum. www.genomicsforum.ac.uk/documents/pdf/RaceMythLecture.pdf (last accessed 23.02.08).
   Hayward, M.D., Miles, T.P., Crimmins, E.M., Yang, Y. (2000). ‘The significance of socioeconomic status in explaining the racial gap in chronic health conditions’. American Sociological Review 65: 910–930.
   Heiat, A., Gross, C.P., Krumholz, H.M. (2002). ‘Representation of the Elderly, Women and Minorities in Heart Failure Clinical Trials’. Arch Intern Med 162: 1682–1688.
   Gambles-Hussain, M. (2003). ‘Ethnic minority under-representation in clinical trials: whose responsibility is it anyway?’ Journal of Health Organisation and Management 17: 138–143.
   Jenkins, R. (1997). Rethinking Ethnicity. Arguments and Explorations. London: Sage.
   Jolly, K., Lip, G.Y., Taylor, R.S., Mant, J.W., Lane, D.A., Lee, K.W., Stevens, A.J. (2005). ‘Recruitment of Ethnic Minority Patients to a Cardiac Rehabilitation Trial: The Birmingham Rehabilitation Uptake Maximisation (BRUM) Study’. BMC Research Methodology 5: 18.
   Juengst, E.T. (1998). ‘Group Identity and Human Diversity: Keeping Biology Straight from Culture’. American Journal of Human Genetics 63: 673–677.
   Kahn, J. (2006). ‘From Disparity to Difference: How Race-specific Medicines may Undermine Policies to Address Inequalities in Health Care’. Southern California Interdisciplinary Law Journal 15: 105–130.
   Karlsen, S., Nazroo, J.Y. (2002). ‘Relation between racial discrimination, social class, and health among ethnic minority groups’. American Journal of Public Health 92: 624-631.
   Khoury, M.J., Burke, W., Thomson, E.J. (eds) (2000). Genetics and Public Health in the 21st Century. Oxford: Oxford UP.
   Macbeth, H., Shetty, P. (eds) (2001). Health and Ethnicity. London: Taylor and Francis.
   Martin, P., Ashcroft, R., Ellison, G.T.H., Smart, A., Tutton, R. (2007). Reviving ‘Racial Medicine’? The Use of Race/Ethnicity in Genetics and Biomedical Research, and the Implications for Science and Healthcare. London: St George’s, University of London.
   Mason, J. (1996). Qualitative Researching. London: Sage.
   Mason, S., Hussain-Gambles, M., Leese, B., Atkin, K., Brown, J. (2003). ‘Representation of South Asian People in Randomized Clinical Trials: Analysis of Trials’ Data’. BMJ 326:1244–1245.
   Mehta, P. (2006). ‘Promoting Equality and Diversity in UK Biomedical and Clinical Research’. Nature Reviews Genetics 7 (September 2006): 668.
   Mehta, P., Saggar, A. (2005). ‘Ethnicity, Equity and Access to Genetic Services – The UK Perspective’. Annals of Human Biology 32: 204–210.
   National Institutes of Health Revitalization Act of 1993. Public Law 103–43; 42 USC 289(a)(1).
   Office of Management and Budget (1997). Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity. Washington, DC: Office of Management and Budget.
   Outram, S.M., Ellison, G.T.H. (2006). ‘The truth will out: scientific pragmatism and the geneticisation of difference’. In Ellison, G.T.H., Goodman, A.H. (eds), The Nature of Difference: Science, Society and Human Biology. Boca Raton, FL: Taylor and Francis.
   Ranganathan, M., Bhopal, R. (2006). ‘Exclusion and Inclusion of Nonwhite Ethnic Minority Groups in 72 North American and European Cardiovascular Cohort Studies’. PLoS Medicine 3: 329–336.
   Ritchie, J., Lewis, J., Elam, G. (2003). ‘Designing and Selecting Samples’. In Ritchie, J., Lewis, J. (eds), Qualitative Research Practice: A Guide for Social Science Students and Researchers. London: Sage.
   Smart, A., Tutton, R., Ashcroft, R., Martin, P.A., Ellison, G.T.A. (2008). ‘The Standardisation of Race and Ethnicity in Biomedical Science Editorial and UK Biobanks’. Social Studies of Science 37.
   Spencer, L., Ritchie, J., O’Connor, W. (2003). ‘Analysis: Practices, Principles and Processes’. In Ritchie, J. and Lewis, J. (eds), Qualitative Research Practice. A Guide for Social Science Students and Researchers. London: Sage.
   Stevens, J. (2003). ‘Racial Meanings and Scientific Methods: Changing Policies for NIH-sponsored Publications Reporting Human Variation’. Journal of Health Politics, Policy and Law 28: 1033–1087.
   Tate, S.K., Goldstein, D.B. (2004). ‘Will Tomorrow’s Medicines Work for Everyone?’. Nature Genetics 36: S34–S42.
   Tutton R. (2008). ‘Biobanks and the Biopolitics of Inclusion and Representation’. In Gottweis, H., Petersen, A. (eds), Monitoring Bodies: The New Politics of Biobanks. London: Routledge.

<< Acknowledgements