Book 2013

Comparative Issues in the Governance of Research Biobanks

Property, Privacy, Intellectual Property, and the Role of Technology

Editors:

ISBN: 978-3-642-33115-2 (Print) 978-3-642-33116-9 (Online)

Table of contents (19 chapters)

  1. Front Matter

    Pages i-viii

  2. No Access

    Chapter

    Pages 1-7

    Introduction: A Law and Technology Approach to the Law of Biobanking

  3. Property and Privacy in Biobanking

    1. Front Matter

      Pages 9-9

    2. No Access

      Chapter

      Pages 11-39

      Research Biobanks Meet Synthetic Biology: Autonomy and Ownership

    3. No Access

      Chapter

      Pages 41-62

      Regulating Biobanks: Another Triple Bottom Line

    4. No Access

      Chapter

      Pages 63-75

      Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States

    5. No Access

      Chapter

      Pages 77-86

      Ownership of Biomedical Information in Biobanks

    6. No Access

      Chapter

      Pages 87-103

      Human Tissues in the “Public Space”: Beyond the Property/Privacy Dichotomy

    7. No Access

      Chapter

      Pages 105-130

      Should Privacy Be Abolished in Genetics and Biobanking?

    8. No Access

      Chapter

      Pages 131-141

      Biobanks and Electronic Health Records: Open Issues

    9. No Access

      Chapter

      Pages 143-161

      Informed Consent and Research Biobanks: A Challenge in Three Dimensions

  4. Intellectual Property and Biobanks

    1. Front Matter

      Pages 163-163

    2. No Access

      Chapter

      Pages 165-189

      The Challenges of Achieving Open Source Sharing of Biobank Data

    3. No Access

      Chapter

      Pages 191-208

      Beyond Open Source: Patents, Biobanks and Sharing

    4. No Access

      Chapter

      Pages 209-229

      Opening Research Biobanks: An Overview

    5. No Access

      Chapter

      Pages 231-249

      The Roles of Material Transfer Agreements in Genetics Databases and Bio-Banks

    6. No Access

      Chapter

      Pages 251-266

      Quasi-Patents and Semi-Patents in Biobanking

    7. No Access

      Chapter

      Pages 267-279

      Accessing Accessions: Biobanks and Benefit-Sharing

    8. No Access

      Chapter

      Pages 281-298

      Conveying Information, Generating Trust: The Role of Certifications in Biobanking

  5. Biobanks: The Perspective of Biobanker’s

    1. Front Matter

      Pages 299-299

    2. No Access

      Chapter

      Pages 301-309

      Scientific and Managerial Premises and Unresolved Issues in Tumour Biobanking Activities

    3. No Access

      Chapter

      Pages 311-325

      The Italian Prototype Networks of Research Biobanks

    4. No Access

      Chapter

      Pages 327-332

      Governance of Biobanks for Cancer Research: Proposal for a Material Transfer Agreement

  6. Back Matter

    Pages 333-339