Consent, trust and ethics: reflections on the findings of an interview based study with people donating blood for genetic research for research within the NHS

Abstract

This paper draws on findings from interviews with people donating blood for a large epidemiological study of psoriatic arthritis concerned with identifying the genetic component in the aetiology of this disease. The 27 qualitative research interviews addressed peoples' reasons for agreeing to be involved in the biomedical research project, their hopes and expectations in relation to the study, and their views about the donation of a blood sample for the genetic element of the research. The involvement of these research subjects can be characterized in terms of an investment in the future health of an imagined community, in which the NHS featured prominently.