and Non-Participation in the North Cumbria
Community Genetics Project
Erica Haimes, Michael Whong-Barr
University of Newcastle, U.K.
This paper uses preliminary analysis from a study in progress to address a number of issues around the social and ethical aspects of genetic databases and DNA sampling. The focus of the paper is the notion of “participation” (how and why do individuals decide to donate samples to a database). This is then used as a base from which to explore, briefly, several wider questions, such as who has a voice in debates around these issues, who forms the relevant constituency for consultations as to the acceptability of genetic databases and what happens when individuals are asked to account for their decisions and actions around donation.
Cumbria Community Genetics Project
The aim of this Wellcome Trust-funded study is to investigate the perceptions of women in Cumbria, in the north-west of England, who have been asked to donate tissue samples and complete a health and lifestyle questionnaire for the North Cumbria Community Genetics Project (NCCGP). In particular, the study is comparing and contrasting the perceptions and attitudes of those who have agreed to participate in the NCCGP with those who have declined, to assess whether there are distinct differences between the two responses.
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. ©2003 Koninklijke Brill NV Printed in the Netherlands.