Funded by the Wellcome Trust, led by Professor Erica Haimes, with Michael Barr as researcher.
The North Cumbria Community Genetics Project (NCCGP) is a research collaboration between Westlakes Research Institute and the University of Newcastle upon Tyne and is based primarily in Whitehaven.
The Project collects blood and tissue samples from the umbilical cord of newborn babies and information about health and lifestyles via questionnaires completed by mothers. The aim of the NCCGP is to assist the identification of gene-disease associations, and the impact of environmental factors on those associations.
Our study sought to compare and contrast the perceptions and attitudes of those who agreed to donate samples to the NCCGP with those who declined. It was based on the premise that we know little about the views of those who have actually been asked to donate to a genetic database.
We have successfully submitted our Final Report for this project and are now working to present and publish our results. Find out more about the project (PDF).
Please contact Erica Haimes for more information.
Haimes, Erica & Whong-Barr, Michael "Key issues in genetic epidemiology: Lessons from a UK based empirical study" TRAMES 8: 1-2; 2004.
Whong-Barr, M., Forthcoming. ‘Informed consent and the shaping of US
and UK
population-based genetic research’, in D. Guston & D. Sarewitz eds.,
Shaping
Science & Technology Policy: The Next Generation of Research, Madison:
University of Wisconsin Press.
Haimes, E., & Whong-Barr, M., In press. ‘Levels and styles of participation in genetic databases: A case study of the North Cumbria Genetics Project’ in R. Tutton & O. Corrigan, eds. Donating, collecting and exploiting human tissue: Social and ethical dimensions of genetic research, London: Routledge.
Haimes, E., & Whong-Barr, M., In press. ‘Competing perspectives on reasons for participation and non-participation in the North Cumbria Community Genetics Project,’ in B.M. Knoppers, ed. Populations and Genetics: Legal Socio-Ethical Perspectives, Kluwer International.
Whong-Barr, M., and Haimes, E., 2003. ‘Why say no? Reasons for non-participation in the North Cumbria Community Genetics Project’, European Journal of Human Genetics 11, Supp. 1. [Abstract]