Executive summary 8
Overview 8
Biobanking trends 9
Population-based biobanks 10
Disease-based biobanks 11
Private-sector biobanks 12
Regulatory and ethical issues 13
Chapter 1 Overview 16
Summary 16
Introduction 17
Definition of biobanks 17
Historical context 18
Scientific and commercial relevance of biobanks 21
Targeted therapeutics 24
Diagnostic and prognostic tests 26
Drug development 30
Disease etiology 31
Future outlook 32
Chapter 2 Trends in biobanking 36
Introduction 36
Introduction 37
The limitations of biobanks 37
Initiatives to improve biobanks 39
Sample variability 42
Sample quality 44
Older biobanks 45
Modern biobanks 47
Biobanking costs 51
Increasing harmonization 53
Future outlook 55
Chapter 3 Population-based biobanks 60
Introduction 60
Introduction 61
Types of population biobanks 61
Cohort studies 63
Founder population biobanks 66
deCODE Genetics 66
CARTaGENE 68
Genizon Biosciences 68
Jurilab 69
National population biobanks 70
UK Biobank 70
LifeGene 73
Estonian biobank 74
Latvian biobank 75
Canadian Partnership for Tomorrow Project 75
Other national biobanks 76
Future outlook 78
Chapter 4 Disease-based biobanks 80
Introduction 80
Introduction 81
Growth in disease-based biobanks 81
Cancer biobanks 82
Other diseases 84
Healthy sample biobanks 88
Collaborative networks 89
onCORE UK 90
International Genomics Consortium 91
Cancer Genome Atlas 91
Future outlook 93
Chapter 5 Private-sector biobanks 96
Introduction 96
Introduction 97
Licensed biobanks in the UK 97
Contract service providers 99
Biomarker discovery companies 104
Pharmaceutical collections 105
Research collaborations 107
Clinical trials 108
Future outlook 110
Chapter 6 Regulatory and ethical issues 112
Summary 112
Introduction 113
Current regulatory framework 113
Informed consent 114
Withdrawal and ownership 120
Confidentiality 121
Commercialization 123
Future outlook 124
Appendix 126
Methodology 126
Index 127
List of Figures
Figure 1.1: Cumulative number of DNA samples banked in population-based studies*, 1970-2009
21
Figure 1.2: NIH sponsored clinical trials conducting gene expression profiling, 2000-08 24
Figure 2.1: Geographical distribution of biobanks 49
Figure 2.2: Drivers and resistors 51
Figure 2.3: The evolution of biobanks 56
Figure 4.1: Number of diseases-based biobanks, by therapy area, US 1995-2008 82
Figure 5.1: Establishments licensed to operate biobanks, by sector, England, Wales and Northern
Ireland, 2008 98
Figure 5.2: Examples of private-sector biobanks 104
List of Tables
Table 1.1: Applications of biobanks 27
Table 2.1: Types of biobanks 48
Table 3.1: Selected population-based cohort studies 65
Table 3.2: Population-based biobanks 75
Table 4.1: Selected cancer biobanks, US 84
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