Large-scale study of populations may contribute significantly to science’s understanding of the complex multi-factorial basis of disease and to improvements in prevention, detection, diagnosis, treatment and cure. This book summarises the proceedings of a conference on human genetic research databases. It examines what they are and provides a number of examples. It looks at how they have been established, governed, and funded. And it looks at how they are managed and commercialised, exploring what the policy implications are for governments.
Table of contents:
Executive Summary Chapter 1. Introduction Chapter 2. Human Genetic Research Databases -Examples of Human Genetic Research Databases --The Personalised Medicine Reserach Project (Marshfield Project) --CARTaGENE --Genome Database of the Lativan Population (Latvia Project) --Icelandic Health Sector Database (Icelandic HDB) --Estonian Genome Project (Estonian Project or EGP) --The United Kingdom Biobank (UK Biobank) --Translational Genomic Research in the African Diaspora (TgRIAD) --GenomEUtwin --The International HapMap Project --COGENE --Public Population Project in Genomics (P3G) -What is a Human Genetic Reseach Database? Chapter 3. Establishment of a HGRD -Nature and Scope of Database -Funding of a Database -Legal Structure -Privacy and Confidentiality -Public Engagement in the Establishment of a Population Database Chapter 4. Data and Sample Collection and Management -Data and Samples -Ownership of Data and Samples -Consent -Right to Withdraw -Results -Education and Training of Data Collectors and Researchers Chapter 5. Database Management and Governance -Management and Governance of Database -Security of Databases -Access to Population Databases -Demise of Database Chapter 6. Commercialisation Considerations -Intellectual Property -Commercialisation -Benefit Sharing Chapter 7. Conclusions -Policy Themes Arising from the Workshop --Is Genetic Information Special? --Public Perceptions --Public Trust --Human Rights Norms and Existing Legal Networks --International Harmonisation --Protection of Identifiable Information --Linkability --Revisiting Basic Principles --Commercialisation Policy -Future Areas of Work Glossary Workshop Agenda List of Particpants Bibliography