Case Studies of Existing Human Tissue Repositories

"Best Practices" for a Biospecimen Resource for the Genomic and Proteomic Era

by Elisa Eiseman, Gabrielle Bloom, Jennifer Brower, Noreen Clancy, Stuart S. Olmsted

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Abstract

The National Biospecimen Network (NBN) Design Team, part of the Tissue Access Working Group convened by the National Dialogue on Cancer, is drafting a blueprint for a high-quality biospecimen network of biological sample banks. To assist in this effort, RAND has conducted case studies of twelve existing human tissue repositories to evaluate their utility for genomics- and proteomics-based cancer research and to identify “best practices” necessary for establishing a national tissue resource and data bank to optimize and accelerate genomics- and proteomics-based research. This monograph presents the findings for each repository evaluated. It addresses biospecimen collection, processing, annotation, storage, and distribution; bioinformatics; consumer and user needs; business plans and operations; privacy, ethical concerns, and consent issues; intellectual property rights and legal issues; and public relations, marketing, and education. All of the repositories evaluated exhibit some of the characteristics that would be useful for an NBN, but some incorporate more of the requirements than others do. Whether the Design Team decides to build a new repository or use existing institutions to create a national network, information gained from existing repositories provides important insights.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Methodology

  • Chapter Three

    Biospecimen Collection, Processing, Annotation, Storage, and Distribution

  • Chapter Four

    Bioinformatics and Data Management

  • Chapter Five

    Consumer/User Needs

  • Chapter Six

    Business Plan and Operations

  • Chapter Seven

    Privacy, Ethical Concerns, and Consent Issues

  • Chapter Eight

    Intellectual Property and Legal Issues

  • Chapter Nine

    Public Relations, Marketing, and Education

  • Chapter Ten

    Findings and Summary of Best Practices

  • Appendix

    Interview Instrument for RAND Evaluation of Existing Tissue Resources

The research described in this report was conducted by RAND Science and Technology for the National Cancer Institute and National Dialogue on Cancer.

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