Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland

Abstract

Our objective was to identify an acceptable governance model for population genetic data banks through measuring the importance of different ethical and social concerns and their relationship to reported likelihood to participate. We conducted a face-to-face interview survey of 1,001 members of the general adult Scottish population who were 16 and over, and included a discrete choice experiment. The results showed a quarter of respondents said that they were certain or very likely to take part in genetic database research. However, reported willingness to participate seemed to be unaffected by further information or governance options. We conclude participation is driven by personal and mundane, everyday factors rather than concerns about governance. However, this should not be seen as a reason to relax the transparent and robust governance frameworks currently under development.

Keywords

governance of science and technology interview survey participation population genetic data banks public consultations

Get full access to this article

View all access options for this article.

References

Cattin, P. and Wittink, R.R. ( 1982) "Commercial Use of Conjoint Analysis: A Survey," Journal of Marketing 46 (Summer): 44-53.

Cleghorn, N. , Ormston, R. and Sharp, C. ( 2007) Scottish Social Attitudes Survey 2006: Public Attitudes to Homelessness. Edinburgh: Scottish Government Social Research.

Cragg Ross Dawson ( 2000) "Public Perceptions of the Collection of Human Biological Samples." London: Wellcome Trust and Medical Research Council.

Godard, B. , Marshall, J. , Laberge, C. and Knoppers, B.M. ( 2004) "Strategies for Consulting with the Community: The Cases of Four Large-scale Genetic Databases," Science and Engineering Ethics 10(3): 457-77.

Haddow, G. and Cunningham-Burley, S. ( 2008) "Tokens of Trust or Token Trust? The Case of Population Genetic Data Collections," in A. Greene , J. Brownlie and A. Howson (eds) Trust, Health and Illness, pp. 152-76. London : Routledge.

Haddow, G. , Laurie, G. , Cunningham-Burley, S. and Hunter, K. ( 2007) "Tackling Community Concerns about Commercialisation and Genetic Research: A Modest Interdisciplinary Proposal," Social Science and Medicine 64: 272-82.

Haddow, G. , Cunningham-Burley, S. , Bruce, A. and Parry, S. ( 2008) "Generation Scotland: Consulting Publics and Specialists at an Early Stage in a Genetic Database’s Development," Critical Public Health 18(2): 139-49.

Hapgood, R. , Shickle, D. and Kent, A. ( 2001) "Consultation with Primary Care Health Professionals on Issues Relating to the Recruitment of Patients to a DNA Collection Study." London: Wellcome Trust and Medical Research Council .

Hapgood, R. , McCabe, C. and Shickle, D. ( 2004) "Public Preferences for Participation in a Large DNA Cohort Study: A Discrete Choice Experiment," Discussion Paper Series 04/5. Sheffield: University of Sheffield ScHARR (School of Health and Related Research), Sheffield Health Economics Group.

10.

Levitt, M. and Weldon, S. ( 2005) "A Well Placed Trust? Public Perceptions of the Governance of DNA Databases," Critical Public Health 15(4): 311-21.

11.

People Science and Policy Ltd (2002) "Biobank UK: A Question of Trust. A Consultation Exploring and Addressing Questions of Public Trust." Report prepared for the Medical Research Council and the Wellcome Trust. London: People Science and Policy Ltd.

12.

People Science and Policy Ltd (2003) "UK Biobank: A Consultation with Nurses in General Practice and Research ." Report prepared for the Medical Research Council and the Wellcome Trust. London: People Science and Policy Ltd.

13.

Ryan, M. , Scott, D. , Reeves, C. , Bate, A. , van Teijlingen, E. , Russell, E. , Napper, A.M. and Robb, C.M. ( 2001) "Eliciting Public Preferences for Healthcare: A Systematic Review of Techniques," Health Technology Assessment 5(5). URL: http://www.hta.ac.uk/1020

14.

Smith, B. , Blackwood, D. , Campbell, H. , Connell, J. , Connor, M. , Deary, I. , Dominiczak, A.F. , Fitzpatrick, B. , Ford, I. , Jackson, C. , Haddow, G. , Kerr, S. , Lindsay, R. , McGilchrist, M. , Morton, R. , Murray, G. , Palmer, C. , Pell, J. , Ralston, S. , St Clair, D. , Sullivan, F. , Watt, G. , Wolf, R. , Wright, A. , Porteous, D. and Morris, A. ( 2006) "Generation Scotland: The Scottish Family Health Study. A New Resource for Researching Genes and Heritability," BMC Medical Genetics 7(74).

15.

Ubach, C. , Bate, A. , Ryan, M. , Porteous, T. , Bond, C. and Robertson, R. ( 2002) "Using Discrete Choice Experiments to Evaluate Alternative Electronic Prescribing Systems," International Journal of Pharmacy Practice 10(3): 191-200.

16.

Viney, R. , Lancsar, E. and Louvier, J. ( 2002) "Discrete Choice Experiments to Measure Consumer Preferences for Health and Healthcare," Expert Review of Pharmacoeconomics & Outcomes Research 2: 319-26.

17.

Wainwright, D.M. ( 2003) "More ‘Con’ than ‘Joint’: Problems with the Application of Conjoint Analysis to Participatory Healthcare Decision Making," Critical Public Health 13(4): 373-80.

18.

Wellcome Trust, Medical Research Council and Department of Health (2002) "The UK Biobank Ethics Consultation Workshop," 25 April.

19.

Wong, M.L. , Chia, K.S. , Yam, W.M. , Teodoro, G.M. and Lau, K.W. ( 2004) "Willingness to Donate Blood Samples for Genetic Research: A Survey from a Community in Singapore," Clinical Genetics 65: 45-51.