Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
ERC workshop:
Ethical and legal
issues
Mark Taylor
Overview
• Ethical issues
• Legal issues
• Solutions
• Resources
Fighting Malaria
Ethics of open research data
When it goes wrong
• Re-identification and de-anonymisation
Ethical concerns – Part I
• Human subject research
– Privacy and confidentiality
– Consent
Questionable uses of data
Ethical concerns – Part II
• Unintended consequences and misinterpretation
• Publicly available data: social media
• Dual ...
Human Genome Project
Bermuda principles
1. Automatic release of sequence assemblies
larger than 1 kb (preferably within 24...
Legal issues
• Intellectual Property Rights (IPR)
• Data protection
• Open Access legislation
Intellectual Property Rights (IPR)
• Copyright
• Trade Secret
• Database rights
Licenses
• Different kinds of licenses
• Creative Commons
– CC-BY-ND-NC
Data protection
• Personal data
• Sensitive personal data
• Pseudonymised data
Eight principle of data protection
• Fair and lawful
• Etc.
How to meet data protection directive
• Personal genome project (US and UK)
Open Access legislation
• Public sector information
• National legislation
Solutions
• Licensing
• Editorial review
• Access control/management
– Committees
– Ethics board
– Participants as partner...
Resources
• Ethics:
– http://www.data-archive.ac.uk/create-manage/consent-ethics/resource
– http://www.ands.org.au/guides/...
Thank you!
Upcoming SlideShare
Loading in …5
×

Ethical and legal issues in making research data open

1,144 views

Published on

Presentation on legal and ethical issues in open access to research data given at the RECODE early career researcher workshop, University of Sheffield 14-15th May 2015

Published in: Science
  • Be the first to comment

  • Be the first to like this

Ethical and legal issues in making research data open

  1. 1. ERC workshop: Ethical and legal issues Mark Taylor
  2. 2. Overview • Ethical issues • Legal issues • Solutions • Resources
  3. 3. Fighting Malaria
  4. 4. Ethics of open research data
  5. 5. When it goes wrong • Re-identification and de-anonymisation
  6. 6. Ethical concerns – Part I • Human subject research – Privacy and confidentiality – Consent
  7. 7. Questionable uses of data
  8. 8. Ethical concerns – Part II • Unintended consequences and misinterpretation • Publicly available data: social media • Dual use
  9. 9. Human Genome Project Bermuda principles 1. Automatic release of sequence assemblies larger than 1 kb (preferably within 24 hours). 2. Immediate publication of finished annotated sequences. 3. Aim to make the entire sequence freely available in the public domain for both research and development in order to maximise benefits to society.
  10. 10. Legal issues • Intellectual Property Rights (IPR) • Data protection • Open Access legislation
  11. 11. Intellectual Property Rights (IPR) • Copyright • Trade Secret • Database rights
  12. 12. Licenses • Different kinds of licenses • Creative Commons – CC-BY-ND-NC
  13. 13. Data protection • Personal data • Sensitive personal data • Pseudonymised data
  14. 14. Eight principle of data protection • Fair and lawful • Etc.
  15. 15. How to meet data protection directive • Personal genome project (US and UK)
  16. 16. Open Access legislation • Public sector information • National legislation
  17. 17. Solutions • Licensing • Editorial review • Access control/management – Committees – Ethics board – Participants as partners • “Soft law” measures – Disciplinary guidelines – Codes of conduct • Openness
  18. 18. Resources • Ethics: – http://www.data-archive.ac.uk/create-manage/consent-ethics/resource – http://www.ands.org.au/guides/ethics-working-level.html – EDINA: http://datalib.edina.ac.uk/mantra/ • Legal: – JISC: http://www.jisclegal.ac.uk – RDNL: http://datasupport.researchdata.nl/en/start-de-cursus/v- legislation-and-policy/ – FOSTER: https://www.fosteropenscience.eu/foster- taxonomy/legal-issues – DMPTool
  19. 19. Thank you!

×