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Buying your Self on the Internet

Wrap Contracts and Personal Genomics

Andelka M. Phillips

Hardback (Forthcoming)
£75.00

Examines the direct-to-consumer genetic testing industry’s controversial use of ‘wrap’ contracts

  • Uses the example of DTC genetic testing companies using wrap contracts as their dominant means of governance to show the challenges that disruptive technologies pose for societies and for regulation
  • Reviews 71 wrap contracts used by DTC companies providing health testing
  • Explores broader issues with online contracting
  • Sets an agenda for improving regulation and the online contracting environment

This book provides an introduction to the world of personal genomics and examines the rise of the direct-to-consumer genetic testing industry (DTC) and its use of 'wrap' contracts. It explores the different types of tests available and the issues that this industry raises for law and society.

Contents

Table of Statutes
Table of Cases

  1. Direct-To-Consumer Genetic Testing and Regulating Disruptive Technology
    1. Introduction
    2. Aims of This Book
    3. Guidance for Readers
    4. What Is Personal Genomics or Direct-to-Consumer Genetic Testing?
    5. Summary of How DTC Services Operate
    6. Bringing Disruptive Technology to the Public
    7. Data Deluge
    8. Methodology
    9. How Should the DTC Industry Be Regulated? The Policy Response to Date
    10. Sources of Law Which Might Be Applicable to DTC in the UK and EU
    11. What Can Go Wrong?
    12. Conclusion

  2. The Science behind that Click of the Mouse
    1. Introduction
    2. The Nature of Genetic Information and Genetic Exceptionalism
    3. Recent Advances in Genetic and Genomic Science
    4. Conclusion

  3. The Rise of Personal Genomics – Overview of the Direct-to-Consumer Genetic Testing Industry
    1. Introduction
    2. Overview of the DTC Industry
    3. Health Tests
    4. Ancestry Testing
    5. Genetic Relatedness Testing
    6. Testing for Athletic Ability
    7. Testing for Child Talent and Testing of Children
    8. Surreptitious (‘Infidelity’) Testing
    9. Match Making Testing
    10. Conclusion

  4. Privacy, Data Protection, and Security in the Context of Direct-to-Consumer Genetic Testing Services
    1. Introduction
    2. General Data Protection Regulation (GDPR)
    3. The UK’s Data Protection Legislation
    4. Privacy Policies and Notices and Website Design
    5. US Privacy Law
    6. Canadian Genetic Privacy Law
    7. Secondary Use of Genetic Databases – the Golden State Killer and Beyond
    8. Indigenous Peoples and Data Sovereignty
    9. Privacy Best Practices for Consumer Genetics Testing Services (July 2018)
    10. Conclusion

  5. Clicking Away Rights in DNA: A Review of DTC Contracts
    1. Introduction
    2. Challenging Unfair Terms in DTC Contracts
    3. Conclusion

  6. Future Directions for DTC Governance
    1. Note for Readers Interested in Purchasing DTC Tests
    2. Suggestions for Reform
    3. Final Thoughts

Bibliography

About the Author

Andelka M. Phillips is Senior Lecturer at Te Piringa, Faculty of Law, the University of Waikato and a Research Associate at University of Oxford’s Centre for Health, Law and Emerging Technologies (HeLEX). She is a writer and academic whose research interests lie in the areas of Information Technology Law and Health and Medical Law. She was formerly the Ussher Assistant Professor in Information Technology Law at Trinity College Dublin and the Convenor of Trinity College Dublin Law School’s Technology, Law and Society Research Group.

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