Blood donation for genetic research What can we learn from donors' narratives?

• Published in: Genetic Databases pp. 39 - 56
• Main Author: Busby, Helen
• Format: Book Chapter
• Language: English
• Published: United Kingdom Routledge 2004; Taylor & Francis Group
• Edition: 1
• Subjects: Biotechnology; Busby, Helen; Citizen participation; Data processing; DNA; Genetics; Illness & addiction: social aspects; Medical ethics; MEDICINE: GENERAL ISSUES; Sociology & anthropology; Icelandic Health Sector Database; Genetic Research Project; Practical Reciprocity; Estonian Genome Project; ALSPAC; Genetic Techniques; UK's Medical Research Council; Blood Donation; ALSPAC Study; Genetic Databanks; Public Engagement; Medical Biobank; Adverse Drug Reactions; Genetic Research; Clinical Examination; Giving Blood; DNA Analysis; DNA Banking; Medical Research Ethics Committees; Mother's Questionnaire; UK Biobank; Psoriatic Arthritis; Tissue Donation
• ISBN: 9780415316798; 0415316790; 9780415316804; 0415316804
• DOI: 10.4324/9780203577929-3

Regulation of the donation of body tissue for research has recently become the subject of intense scrutiny in the UK. Concern has been expressed about the impact of a number of controversial developments in medicine and in biotechnologies generally on the willingness of people to participate in ongoing research. If the practitioners and institutions of science are being pushed to confront their dependence on the support of the communities which fund them, the situation faced by genetic research is particularly striking. To date, much of the genetic research directly involving human subjects has been concerned with particular, often rare, genetic diseases and has sought the participation of affected patients and their relatives. The current agenda envisages a phase of larger population-based studies to explore the genetic contribution to common diseases and to adverse drug reactions. 1 Thus a wave of larger studies is anticipated, seeking the involvement of many thousands of people who have no prior experience of or interest in a particular disease.