Key issues in genetic epidemiology: Lessons from a UK based empirical study

Erica Haimes¹, Michael Whong-Barr²

¹Policy, Ethics, and Life Sciences Research Institute (PEALS),
²University of Newcastle upon Tyne

Abstract. This paper addresses critical issues in DNA banking by using the UK-based North Cumbria Community Genetics Project (NCCGP) as a case study. The NCCGP collected blood and tissue samples from the umbilical cord of newborn babies, maternal blood samples and personal health information derived from questionnaires in order to conduct genetic epidemiological studies. Our paper, based on findings from a Wellcome Trust funded study, provides empirical data on the nature of participation and non-participation in genetic databases and addresses key issues such as informed consent, altruism, and notions of community. We argue for the need to problematise concepts of genetic donation and to investigate the particular social circumstances in which ethical issues arise. Only through empirical research can we provide much needed evidence to inform normative discussions and policy-making in the area of population genetics.