Table of Contents Foreword Acknowledgments Executive Summary Acronyms
Modules 1. Why the National Biospecimen Network? 2. Management of Ethical and Legal Issues 3. Biospecimen and Data Collection and Distribution 4. Bioinformatics and Data Management 5. Communications 6. Governance and Business Models 7. National Biospecimen Network and Public Health 8. Demonstration Project References Glossary Appendices A: Case Study: The Role of Biospecimens for Discovery of a Targeted Cancer Therapy B: Case Study: Biospecimens for Validation of a Biological Target and Discovery of Alternative Therapeutic Uses C: Case Study: Cancer Tissue Samples Key to Development of High-Precision Genomic Diagnostic Test D: Interview Instrument for RAND Evaluation of Selected Existing Tissue Resources E: National Cancer Institute and National Dialogue on Cancer Research Team Questionnaire to Assess Biospecimen Needs and Response Frequencies F: National Biospecimen Network Blueprint Design Team and Advisors Meeting Participant List: July 28–29, 2003 G: Examples of Potential Needs and Uses for Biospecimens by Constituency H: Guidance for Informed Consent for Tissue Repositories I: The National Cancer Institute Tiered Consent Form J: Examples of Ethics Oversight Groups K: Best Practices for Repositories: International Society for Biological and Environmental Repositories L: Vignette: Life Cycle of a Biospecimen Through the National Biospecimen Network M: Advanced Analysis Techniques N: Nonprofit, Government-Funded Example: The Cooperative Human Tissue Network O: Nonprofit, Eventual Private/Public Funding Example: United Kingdom National Cancer Tissue Resource P: Nonprofit, No Government Funding Example: The SNP Consortium Q: For-Profit, Minimal Government Funding Example: Ardais Corporation R: For-Profit, Primarily Private Funding Example: First Genetic Trust S: Private/Public Funding Example: International Genomics Consortium Expression Project for Oncology (expO) T: Private/Public Funding Example: Organ Procurement and Transplantation Network