1. 1 Building a Sustainable Framework for Open Access to Research Data Through Information and Communication Technologies Gideon Emcee Christian telecentre.org December 2009 International Development Research Centre

2. 2 The Outline Introduction Data rights in US and EU Frameworks for open data Ethical Issues Factual Trend in Open Data Open Access and Data Utility Conclusion

3. 3 Introduction Open Data Removal of access barriers to macro/publicly available data. In-depth access to other aspect of an openly accessible data e.g. access to micro-data

4. 4 Data rights Data rights in US –Fiest v. Rural - “originality” or “sweat of the brow” Data rights in EU –EU Database Directive conventional copyright protection – originality “sui generis’ protection – not a real IPR, meant to protect economic interest in database creation, restrict whole or substantial copying Data rights are transferable

5. 5 Frameworks for open data Open data contract International HapMap Project Open Content Licenses GNU Free Documentation License (GNU FDL) –Based copyleft principle (share-alike) –suitable for works whose purpose is instruction or reference Creative Commons (CC) license –Attribution (BY) –Non-Commercial (NC) –No Derivative (ND) –Share-Alike (SA)

6. 6 Creative Commons Free to use any or combination of the CC licensing condition Subsists with copyright Uniprot Project (BY+ND) Criticism “Remote control” over downstream user of data Some conditions are not compatible e.g ND+SA

7. 7 Open Data Commons –Standard for copyright protection differs from one legal jurisdiction to another –Contractual terms and conditions may carry legal weight in jurisdictions but not in another –Various conditions in CC licence may operate against data integration –Data commons requires rightsholders to dedicate their works to the public domain for the benefit of the public and relinquish all rights in the work –The principle is to return data to public domain and grease the wheel of research and inovation.

8. Open Data Commons Public Domain Dedication and License (PDDL) Science Commons Data Protocol Creative Commons Zero (CC0) licence –“The person who associated a work with this document has dedicated the work to the Commons by waiving all of his or her rights to the work worldwide under copyright law and all related or neighboring legal rights he or she had in the work, to the extent allowable by law.” Criticism “No right reserved” Lack of attribution 8

9. Ethical Issues Privacy and confidentiality - Remsburg v. Docusearch Privacy v. Open Access 9 Privacy Advocates OA Advocates Definition 1 Open Access to public data Definition 2 Access to micro data

10. dbGaP Project Involved collection of highly sensitive genetic information. Has the goal of making the data freely and widely accessible. The database developed two levels of access – open and controlled access. Prior informed consent – Hapmap Project 10

11. Factual Trend in Open Data Of 12 randomly selected pure and social sciences data archive, only 4 has full open access. A growing number of pure science databases are adopting full open access policy than other disciplines. Research funders play a crucial role in enhancing open access to research data. 11

12. Archive or DatabaseLevel of access Type of Data 1GenBank Full Open AccessPure science 2 The protein data bankFull Open AccessPure science 3 Universal Protein ResourceFull Open AccessPure science 4HapMap Full Open AccessPure science 5 dbGaPOpen Access/restricted accessPure science 6 AfrobarometerFull Open Access/Delayed data release Social science 7 ZACAT - GESIS Online Study Catalogue Open Access/Restricted Access Social science and others 8 Inter-University Consortium for Political and Social Research Open Access/Restricted Access Social science and others 9 Economic and Social Data Service Restricted AccessSocial science and others 10 Odesi (Ontario)Restricted AccessSocial science 11 ADPSS Socio DataRestricted AccessSocial science 12 UK Data ArchivesRestricted AccessSocial sciences and humanities 12

13. ZACAT - GESIS Online Study Catalogue 13

14. The Relationship between Openness and Utility Number of downloads and visits to database not a good tool for measuring data utility The number of research publications emanating from data derives from a database or archive is a much better yardstick. But it is often very difficult for open access archives to keep an accurate track of the number of publications resulting from their data. 14

15. Tracked Research publications based on the Hapmap Project 15

16. Areas for further research What are the yardsticks for determining the most appropriate framework for open data access? To what extent should ethical concerns appropriately restrict access to research access? What is the most appropriate methodology for determining the empirical correlation between openness and data utility? 16

17. Acknowledgments Frank Tulus Michael Clarke Telecentre.org CTAP - IDRC 17 The End gchristian@idrc.ca