世界经济论坛：2020年基因数据的政策与伦理：向所有人开放基因组医学的价值 （英文版）（29页）.pdf

1、White Paper Genomic Data Policy Framework and Ethical Tensions June 2020 World Economic Forum 9193 route de la Capite CH1223 Cologny/Geneva Switzerland Tel.: +41 (0)22 869 1212 Fax: +41 (0)22 786 2744 Email: contactweforum.org www.weforum.org 2020 World Economic Forum. All rights reserved. No part o

2、f this publication may be reproduced or transmitted in any form or by any means, including photocopying and recording, or by any information storage and retrieval system. This report has been published by the World Economic Forum as a contribution to a project, insight area or interaction. The findi

3、ngs, interpretations and conclusions expressed herein are a result of a collaborative process facilitated and endorsed by the World Economic Forum, but whose results do not necessarily represent the views of the World Economic Forum, nor the entirety of its Members, Partners or other stakeholders. 3

4、Genomic Data Policy Framework and Ethical Tensions Contents Foreword Introduction Policy framework Framework structure and components Policy framework guiding principles Application of the framework Ethical tensions Overview Six ethical tensions Next steps Conclusion Appendix Contributors References

5、 Endnotes 05 06 09 09 10 12 13 13 14 18 18 19 20 22 26 4Genomic Data Policy Framework and Ethical Tensions 5Genomic Data Policy Framework and Ethical Tensions Foreword Many scientists, authors and thought leaders have posited that we are in the “Age of the Genome”. Our ability to understand humans a

6、t the very basic level the level of our genes, or the units of material that pass along instructions from one generation to the next allows us to take a more targeted and personalized approach to screening, preventing, diagnosing and treating disease. Researchers and clinicians are, for example, str