House of Lords portcullis
House of Lords
Session 2000-2001
Publications on the internet
Science and Technology Committee Publications

Science and Technology - Fourth Report

Here you can browse the report which was ordered by the House of Lords to be printed 20 March 2001.


CONTENTS

FOURTH REPORT

  • FOREWORD
  • CHAPTER 1: SUMMARY AND RECOMMENDATIONS
  • Introduction
  • Structure of the Report
  • Recommendations
  • Databases
  • MRC/Wellcome/DoH UK Population Biomedical Collection
  • Training
  • NHS data
  • GMC guidelines
  • Consent
  • Medical Data Panel
  • Forensic science
  • Patents
  • CHAPTER 2: BACKGROUND TO THE INQUIRY
  • The importance of human genetic databases
  • Relations with the Human Genetics Commission
  • Sub-Committee membership
  • Call for evidence
  • Exclusions
  • Evidence received
  • Abbreviations and glossary
  • CHAPTER 3: SETTING THE SCENE
  • Introduction to genetics
  • What is a genetic database?
  • Our definition
  • Existing databases
  • The experience of other countries
  • Protection of data
  • Conclusion
  • CHAPTER 4: CURRENT AND FUTURE BENEFITS
  • Current benefits
  • Future medical benefits
  • Disease prevention
  • Genetic screening and early detection of disease
  • Pharmacogenetics and development of new drug treatments
  • The proposed UK population biomedical collection
  • Forensic applications
  • Contrast with medical applications
  • National DNA Database
  • Advances in genetic and molecular technology
  • Conclusions
  • CHAPTER 5: INFORMATION TECHNOLOGY AND DATA LINKAGE
  • Drowning in data
  • Information technology
  • Genetic sequence data
  • UK Population Biomedical Collection
  • Data linkage
  • Examples of data linkage in different settings
  • Problems of data linkage
  • Essential skills
  • Conclusions
  • CHAPTER 6: ROLE OF THE NHS
  • The vision
  • Current position
  • Data quality
  • Disease registers and data linkage within the NHS
  • Future challenges and prospects
  • Data quality
  • Electronic patient record and data linkage
  • Disease registers
  • Conclusions
  • CHAPTER 7: ETHICS, PRIVACY AND CONSENT
  • The sensitivity of personal genetic data
  • Data and consent
  • Types of consent
  • Primary and secondary uses of data
  • Public good
  • Long-term studies
  • Regulation
  • Anonymisation
  • Proposed terminology
  • The degree of anonymisation
  • GMC guidelines
  • Ethical considerations
  • Overseeing research and the concept of a 'trusted third party'
  • Ethics Committees
  • The Bellingham Committee
  • Forensic applications
  • Conclusions
  • Secondary use of data
  • Anonymisation and consent
  • Forensic applications
  • CHAPTER 8: COMMERCIAL APPLICATIONS
  • Ownership of data
  • Intellectual property
  • Public-private partnership
  • Intellectual Property Rights
  • Patents
  • Conclusions
  • CHAPTER 9: CONCLUDING REMARKS
  • Appendix 1: Sub-Committee II

    Appendix 2: Call for evidence

    Appendix 3: Witnesses

    Appendix 4: Seminar held at Imperial College, London

    Appendix 5: Visit to the Human Genome Campus, Hinxton

    Appendix 6: Abbreviations

    Appendix 7: Introduction to genetics and glossary

    Note


    Pages of the Report, in the first part of this volume, are numbered in bold type.


    Most of the written evidence was published in the earlier volume, Human Genetic Databases: written evidence received up to 31 October 2000, Session 1999-2000, HL Paper 115.


    The oral and some further written evidence is published in the second part of the present volume, where the pages are numbered in ordinary type, restarting at page 1.


    In the text of the Report:


       p refers to a page of written evidence in the earlier volume;


       P refers to a page of written evidence in the second part of the present volume; and


       Q refers to a question in the minutes of evidence also in the second part of this volume.



     
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