Genetic databases Socio-ethical issues in the collection and use of DNA

• Main Authors: Tutton, Richard, Corrigan, Oonagh
• Format: eBook Book
• Language: English
• Published: London Routledge 2004; Taylor and Francis; Taylor & Francis Group
• Edition: 1
• Subjects: Amino acid sequence; Bioinformatics; Biotechnology; Citizen participation; Data processing; Databases, Genetic > ethics; DNA; DNA data banks; Genetics; Genomics; Informed Consent; Informed consent (Medical law); Medical ethics; New Genetics; Nucleotide sequence; Sociology of Health and Illness; trust; icelandic; PXE International; National DNA Database; Non-therapeutic Research; UK Medical Research Council; UK House; issues; Informed Consent Procedures; Human Genetic Databases; Informed Consent; Medical Biobank; Population Collection; socio-ethical; Clinical Drug Trials; UK Drug Company; biobank; sector; informed; Icelandic Health Sector Database; Genetic Databases; DNA Bank; health; Estonian Genome Project; consent; DNA Sample; Health Sector Database; ALSPAC Study; Public Engagement; Sensitive Information; UK's National Health Service; Mother's Questionnaire; UK Biobank; wellcome; Human Biological Material
• ISBN: 9780415316798; 0415316790; 9780415316804; 0415316804
• DOI: 10.4324/9780203577929

Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases.