The Future of Biobanks: Regulation, ethics, investment and the humanization of drug discovery

Table of Contents

The Future of Biobanks Executive summary Overview Biobanking trends Population-based biobanks Disease-based biobanks Private-sector biobanks Regulatory and ethical issues

Chapter 1 Overview

• Summary
• Introduction
• Definition of biobanks
• Historical context
• Scientific and commercial relevance of biobanks
• Targeted therapeutics
• Diagnostic and prognostic tests
• Drug development
• Disease etiology
• Future outlook

Chapter 2 Trends in biobanking

• Introduction
• Introduction
• The limitations of biobanks
• Initiatives to improve biobanks
• Sample variability
• Sample quality
• Older biobanks
• Modern biobanks
• Biobanking costs
• Increasing harmonization
• Future outlook

Chapter 3 Population-based biobanks

• Introduction
• Introduction
• Types of population biobanks
• Cohort studies
• Founder population biobanks
  • deCODE Genetics
  • CARTaGENE
  • Genizon Biosciences
  • Jurilab
• National population biobanks
  • UK Biobank
  • LifeGene
  • Estonian biobank
  • Latvian biobank
  • Canadian Partnership for Tomorrow Project
  • Other national biobanks
• Future outlook

Chapter 4 Disease-based biobanks

• Introduction
• Introduction
• Growth in disease-based biobanks
  • Cancer biobanks
  • Other diseases
• Healthy sample biobanks
• Collaborative networks
  • onCORE UK
  • International Genomics Consortium
  • Cancer Genome Atlas
  • Future outlook

Chapter 5 Private-sector biobanks

• Introduction
• Introduction
• Licensed biobanks in the UK
• Contract service providers
• Biomarker discovery companies
• Pharmaceutical collections
• Research collaborations
• Clinical trials
• Future outlook

Chapter 6 Regulatory and ethical issues

• Summary
• Introduction
• Current regulatory framework
• Informed consent
• Withdrawal and ownership
• Confidentiality
• Commercialization
• Future outlook

Appendix

• Methodology
• Index

List of Figures

• Figure 1.1: Cumulative number of DNA samples banked in population-based studies*, 1970-2009
• Figure 1.2: NIH sponsored clinical trials conducting gene expression profiling, 2000-08
• Figure 2.1: Geographical distribution of biobanks
• Figure 2.2: Drivers and resistors
• Figure 2.3: The evolution of biobanks
• Figure 4.1: Number of diseases-based biobanks, by therapy area, US 1995-2008
• Figure 5.1: Establishments licensed to operate biobanks, by sector, England, Wales and Northern Ireland, 2008
• Figure 5.2: Examples of private-sector biobanks

List of Tables

• Table 1.1: Applications of biobanks
• Table 2.1: Types of biobanks
• Table 3.1: Selected population-based cohort studies
• Table 3.2: Population-based biobanks
• Table 4.1: Selected cancer biobanks, US